in FS, Planning

Drama in real life: A place for mom

In my ideal world, you’d now be reading an article about the freelancing or entrepreneurship or extreme couponing or one of the half dozen other topics I’ve started to write about. In my ideal world, I’d go to the gym this morning, and then to Spanish lessons this afternoon. In my ideal world, Kris and I would go see the Portland Timbers play this evening. Unfortunately, I don’t live in my ideal world.

Instead, I live a world where my mother’s descent into mental illness has once again reached a crisis. And although my family is better prepared for it this time ā€” we have the power of attorney in place, we have a list of Mom’s medications and phone numbers for her doctors, we’ve been researching live-in care and assisted-living facilities ā€” we’re still not as prepared as we should be.

The difference this time is that everyone, including the doctors, is taking this seriously, and we’re devoting all our time and energy to finding a solution.

A Little Background

My mother has struggled with mental health problems for over a decade. Three years ago, she took a turn for the worse and spent three weeks in the psych ward of a local hospital. When she was released, she was fine. In fact, she was better than I’d seen her in years.

Since then, she’s had a handful of relapses. After the most recent crisis in January, I wrote about the difficulties of caring for aging parents, and I asked GRS readers for advice. I acted on some of it. We had a power of attorney drafted and Mom drew up a basic living will. We started to discuss what might happen in the future. But we never finished the process completely. When Mom’s health improves, we tend to become complacent. It’s tough to push her to prepare for when she’s non-functional when, at that moment, she seems fairly cognizant.

Lately, though, Mom has become more and more disoriented. She’s confused. She doesn’t know what the date is, and often can’t remember things we’ve told her just hours before. (Or seconds before.) When we noticed that she wasn’t taking her medication properly (she was taking it mostly at random, often days in advance of when she ought to), we took her to the doctor. The doctor agreed there was cause for concern, but couldn’t find anything medically wrong with her. As a family, we began to check on her daily.

Over the past few weeks, Mom’s condition has continued to decline. She hasn’t been taking care of basic hygiene. She hasn’t been eating. She still can’t take her medication at the right time. It had just occurred to us that perhaps she shouldn’t be driving when Mom called to let us know she’d driven through the back wall of her garage. We took away her keys.

Mom's garage

Final Crisis

Last Thursday, I flew to Colorado for the first of two weekend conferences. Before I left, I made plans to research ways to help Mom upon my return.

But on Friday, as the first conference was beginning, I learned that Mom’s doctor had ordered her to be admitted to the hospital. My wife and my brother were with her. I debated flying home, but Kris told me everything was under control.

Throughout the weekend, my family sat with Mom as the doctors tried to figure out what was wrong with her. But neither the internist nor the psychiatrist nor the neurologist could find anything specific that was the matter. “They’ve given her a diagnosis of ‘altered mental state’,” Kris told me by phone. “Which is code for, ‘we don’t know what the hell’s wrong with her’.”

On Monday, as I was preparing to speak on a panel at a conference in Seattle, Mom’s internist called to give me a run-down of her condition. After talking with him and talking with Kris, I decided to cut my trip short. I had planned to stay another day, but instead I finished my talk, hopped on a train, and went to the airport to ask to fly home to Portland immediately. (On a lighter note, it turns out my good friend Chris Guillebeau was on the same flight, returning from his latest round-the-world jaunt.)

On Tuesday, I joined my brother Jeff at the hospital. We sat with Mom for four hours, talking to her and talking to the nurses and doctors. Still they couldn’t give us a diagnosis. What they could tell us, however, was that there was no medical reason for her to remain in the hospital, so she was going to be discharged within a day. And after discharge, she was going to require round-the-clock care.

Mom is only 63, but her short-term memory is essentially non-existent. She can tell you what happened 20 years ago, but not what happened 20 minutes ago. Or 20 seconds ago. Perhaps worse, she has trouble articulating the thoughts in her head. It’s clear her mental faculties haven’t completely vanished, but she’s unable to convey what she’s thinking. She has aphasia. And, as of Tuesday afternoon, the doctors have decided to label her condition as dementia. (Though, again, this seems to be a catch-all for things they can’t define.)

Armed with this knowledge, and feeling the pressure to find a solution fast, we spent most of Tuesday researching options such as live-in care and assisted living facilities.

Happy Acres

One by one, our top choices fell away. There’s really no way for Mom to live with any of her three sons. It’s cost prohibitive to hire full-time care fo her, and even if we did, the caregiver might not be able to do some of the things we’d like. We can’t place her in a lot of programs because she doesn’t qualify. She makes too much from the box factory, or she’s too young, or she lacks the required diagnosis.

After some research, my brother discovered an assisted living facility just ten minutes from his house. Best of all, this place specializes in “memory care”.

So, Jeff and I gave Happy Acres a tour. Having nothing to compare it to, it seems fine. The memory unit is isolated from the rest of the building, and the patients given special care. Happy Acres is nice ā€” but sad. These folks, who were once vibrant and interesting, are now shells of themselves. Also, they’re all 75. Or 85. Mom is 63. Sill, this seemed like a great place to watch her while we see if she improves. Here, she’s close to us. Here, she’ll have folks dispensing her medicine and helping her eat healthy food.

After weighing the options, we decided Happy Acres was the best bet, even if it is expensive.

A Handful of Stuff

Last night, my brothers and I (and our wives and kids) met at Panera Bread near the hospital in order to plan Mom’s future. Where will she live? For how long? What will she take? Who will pay for the service? Who will pay her existing bills? What will happen to her cats?

During this most recent crisis, Mom’s financial skills have vanished. She’s been sending two checks for a single bill. Or sometimes she doesn’t send them at all. When she does write a check, the numbers are sometimes random. Here’s a glimpse at the gibberish she wrote in her checkbook register last month:

Mom's checkbook register
The gibberish in Mom’s checkbook register.

After our mediocre (but costly) dinner, the family headed into the nearby mall to buy some basic things Mom will need when moving to Happy Acres this morning. We bought her bedding, a mattress set, towels, and more. This morning, instead of going to Crossfit, and instead of writing or studying Spanish, I’m helping my brothers set up her new living space in a small room very much like a college dorm. Her entire life (or the physical aspect of it) is being reduced to the bare necessities.

Note: We’re now very glad we had a power of attorney drafted after Mom’s last crisis. It allows us to use her funds to buy the mattress, etc. In fact, all of the various legal documents we assembled will make this process easier.

Meanwhile, the entire family plans to work together to sort through the remains of Mom’s normal life. I think the women plan to purge her house and clean it from top to bottom. Jeff and Tony are talking about repairing the garage. I’ll figure out how much money she has in her checking account (almost certainly not the $200,000 she has noted in the checkbook register), and I’ll cancel accounts and services she no longer needs.

All of this is complicated by our existing plans. Kris and I leave for Alberta in a matter of days. Jeff and his family are headed to British Columbia upon our return. Tony has plans of his own. How do we juggle what we want to do with what we ought to do? So far, we’re working together to make things right. But there’s a good chance I’ll have to cancel my trip to England in August. I’ll try to see it through, but if my family needs me here, I’ll stay in the States.

So, I have some great posts in the works for Get Rich Slowly, but they’re going to be late. And there may be some blanks spots in the posting schedule over the next week. I’m spending most of my time with Mom, not on the computer. (My goal is to do both, if possible.) Take care!

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261 Comments

  1. *hug*
    There are no easy answers in these situations – just keep reminding yourself that you are doing your best (as I’m sure you all are). Actually, it sounds to me like you’re a lot better organised than most – you have power of attorney, a living will, and somewhere for her to go.
    Your mom is very lucky to have you all.

    • JD, I agree with all the caring sentiments by other readers.

      This is no doubt a very difficult time for you all…and your mum. You have reminded me of just how important it is to have certain things in place for the unexpected.

      Take care, stay positive but knowing that what will be, will be and my favourite saying “This too will pass”

      *hugs from Susan in Australia

  2. I’m sorry to hear about your mother. It’s never easy taking care of someone who you remember as taking care of you for so long. I have a mother nearing this same state and a Father-in-law with M.S. Maybe this would be a good time to start reseraching Long Term Care insurance and how it applies to family members, and does it make financial sense.

    • You can’t buy long term care insurance when the person is gong to need it. This is insurance fraud, and a rip-off of those who were foresighted enough to purchase the insurance in case they will need it, and pay premiums for years.

      • It’s only insurance fraud if you are lying about it. Granted, you will probably not be eligible at this point, but there’s no call to jump fraud accusations when people probably just don’t realize what the eligibility standards. Nor any need to gloat about your own responsibility and foresight in the face of someone else’s personal tragedy.

        • Sarabeth,the way insurance works is as follows: the vast majority of people pay premiums for an extended period. Many, of not most, never do need the coverage. A very few people experience misfortune and need coverage quickly. This premium money is invested, and grows. As the small number of people who require coverage in any one time period compared to the very large number of premium payer need coverage, there is ample money in reserve to pay those claims.

          When a significant number of people decide to get coverage when they start having symptoms, but before they are diagnosed, the financial reserve to cover everyone is not there. The result is that the insurance company goes out of business, and those who paid in for years, and who got the coverage when they were healthy, are screwed.

          So yes, it is insurance fraud to decide to obtain insurance when symptoms start, even if you “get away with it.” The people you are defrauding are those who honestly paid into the coverage for years and then find that they can’t get coverage.

          There is a reason why there is a three month waiting period before you are covered under flood insurance. Otherwise, thousands of people would wait to buy theirs when the flood is on its way. The same holds, in spades, for disability and long term care insurance.

          And no, I don’t have a dog in this fight. I don’t have long term care insurance, so I certainly am not gloating.

      • My M-I-L bought long term care insurance 10 years ago and I thought it was a scam. She’s been in an assisted living facility now for 12 months and hasn’t paid a dime. She’s been taking advantage of her long term care plan. Joke was on me…

        • I’m glad your mother in law was so smart. Sorry that she needs the coverage, but I’m glad it worked out for her!

  3. We are dealing with my father-in-law’s failing health right now, and while the emotional devastation of losing a loved one is as draining as one might expect it to be, we weren’t prepared at all for the demands of sorting out the financial concerns. It’s not just obtaining care or eventually planning a funeral, but having to take charge of a complete other financial life on top of our own. It’s made me question how my son will deal with our aging–as an only child, he won’t have any siblings to help take on the load.

    Many thoughts and prayers being sent to your family as you go through this process!

  4. I’m so sorry to hear about this, J.D. It’s got to be awfully hard to have this happen when your mom is relatively young.

    I hope that things go as smoothly as possible, and I so think you’re making the right choice to put your family ahead of some blog posts.

  5. My thoughts and prayers are with you and your family right now. We’re going through something similar with my grandmother currently. So I know where you’re coming from…

  6. This shows that life is not easy, it is full of hardships. May your mom get well soon.

    It’s ok, your readers won’t mind not seeing a new post in the morning, for few days. charity begins at home, take wise decisions

  7. Best of luck with this, J.D., and good wishes to the rest of your family too.

    First things first. Alberta and England will always be there. So will Crossfit and the Spanish lessons. So will we.

    • Totally agree.

      Thanks for sharing w/us, JD. Please take all the time you need. We’re all here thinking of and praying for you and your family. Don’t feel you need to take care of us, too.

  8. I feel for your situation. We think that my grandparents might be slipping into this exact same mental state, and it is very scary. I would recommend spending as much time as you need with your mother, and ensuring that you have no regrets!

  9. I hope you can get your Mom settled in the new place and get things figured out. Good luck.

    As useful as this post will be to some people, I have to say that if it was me who was in decline, I would not like my kids to be posting all the gory details on the internet for the world to see.

    • Mental illness is just that, an illness. Just like cancer, but much harder to diagnose. There’s nothing to be ashamed of, and no reason to hide the reality.

      I’m praying for you and your family, J.D. Having had a mentally ill mother for many years, I know only too well how painful and difficult this time is.

      • I’m not saying JD should hide it. I’m sure this story is very useful for a lot of people.

        What I’m talking about is respecting the privacy of another person. In particular, I thought that showing the “gibberish” check book was a bit too much.

        I guess it’s a question of balance – the post is more useful with those kind of details (so we know the exact situation he’s dealing with), but at what point does someone’s privacy get invaded too much?

        • I understand what you are saying Mike – however, I myself understood where JD was coming from – his mother’s check register was all over the place – so it was a visual on what kind of situation he was/is dealing with. The good thing is it doesn’t show her name, acct. numbers;etc.

          I myself experienced the same type of scenario when I took care of my grandmother (suffering from Alzheimer’s) and the mess that I stepped into was completely overwhelming! Lucky for JD and his family that they have taken care of the power of attorney and other essentials already – I stepped in blindly and it was a very stressful and emotional 18 months – and my grandmother couldn’t remember anything so she could never help me sort out her own personal affairs when it was needed. Good luck to you and your family JD.

        • It’s really very KIND of you, Mike, to think of his Mum’s dignity right now. You’re not exactly knocking JD, you’re just treating HER like the human she still is. šŸ˜€

    • Thanks for the concern, Mike. I thought long and hard about what to post here. (And talked it over with family.) There are a bajillion examples I could have used. In the end, the garage and the checkbook seemed to be quick, poignant pictures of Mom’s condition, so I used them. I agree there’s a fine line, and I’m trying to respect it while also providing a little “color”. It’s important to talk about this stuff honestly, but at the same time, too much is too much.

      • This is what makes your blog so good. You truly make it so personal that everyone can relate to your life. Trying to balance privacy and publicity is just as difficult to balance saving vs. spending. Thanks for sharing your life with us because it makes us more aware and appreciative of our own lives!

      • Some of us have no idea what it’s like to be in this type of situation. I appreciate it that you trust us enough to share this aspect of your family’s life. These are things many of us will face in our lives and for me, at least, it’s a clear indication of what might happen and helps me better understand a potential reality. I respect how you and your family are coping with what is a very difficult and painful situation for all. If I ever have a similar situation, I hope my family will be as well prepared and caring as yours is. God bless you.

  10. Huge prayers for you and your family. Been through this with two grandmothers now. It’s not easy! After you get things set up initially you’ll get a routine but it still can be a challenge. One day at a time.

  11. The link you give to custombox.com triggers a ‘This site is a reported attack site and has been blocked’ message. You might want to look into that.

    • Thanks, Tim. I fixed that last week, but Google is lagging on their verification. I just checked again this morning, and the site should be clean.

  12. I am so sorry about your mother, JD. May I say you and your family are handling this situation with love and grace. Take care.

  13. So sorry to hear this. Hopefully the home you have chosen for your mother has someone to help with family services, who can talk you through things and help deal with the emotional aspects as well as the pracitcal. Also, depending on how the financial aspect turns out you may want to look into SSI disability and medicare for her — it could make life a lot easier for all of you. Best of luck to you and your family.

  14. Hi J.D. and Kris – Having been through this transition with a far-too-young parent like your mom is years ago, my heart goes out to you. In my mom’s case, she was physically failing, but still well aware and none too happy about “being put out to pasture,” as she put it. If I can offer advice, don’t try and get everything done (like sorting and purging in the house, for example) all at once. I’m sure your siblings and Kris will support you keeping your travel plans intact. You all are fortunate that you can share responsibilities and tasks with this situation. Hang in there.

  15. This is a tough situation. I hope that your mom can eventually improve. I am also really happy for you that you guys at least had some preliminary plans in place.

    I wouldn’t worry about the site–focus on your mom. That’s time you can’t get back.

    Just a suggestion, but you could re-post articles that were most commented on or “The best of GRS” in the sections where you might not have articles. They should be easy to set up ahead of time, I think.

    Take care of yourself.

    And thank you for posting this. It’s a really good reminder for the rest of us about getting things done before they hit crisis time.

  16. Good luck with everything. Such a tough situation, take the time you need for your family and don’t worry about the goings on with the blog!

  17. Often the child becomes the parent in these situations. Remember that she has sacrificed much to raise you. I never understood how much of a job (priority) children are until I had my own.

    It sounds like she raised good children. Keep it up.

    • being a parent to your children and your parent at the same time is VERY challenging.. especially when you’re the only child to the failing/ailing parent.

  18. Sending thoughts and prayers your way. We’ve been through this with my grandmother. It’s not easy, but she has children who love her and care for her and that makes all the difference.

  19. JD —

    My mother, age 83, also suffers from increasing dementia, and within the year I suspect she will no longer be able to live with my father, age 88, who is trying to take care of his mate of 59 years. No short or medium term memory, no financial skills, deteriorating personal hygiene.

    Power of Attorney and a living will are a good start. In some states, you will also need a separate durable Medical PoA as well as a general POA. And in some states, as a result of HIPPA, you will also need a document which allows the holder of the medical POA to have access to her medical records.

    Balancing care of parents with your own life is key, and is something I’m continuing to work on. You’re fortunate to have brothers who are local and want to be involved. It’s not an easy solo gig.

    For readers who have parents with Long Term Care Insurance (or who have it themselves) now is the time to look at the fine print. Is dementia excluded? Are the “90 days” of self-funded care before LTC kicks in 90 calendar days, or 90 service days? This is a significant factor if your parent only needs help 2x/week. Is a hospital stay required before LTC can be invoked? This is often not feasible with dementia.

    I’m investigating having a trust fund set up for my mother when she is widowed, not only to protect her assets (Dad has been a great saver and they never lived beyond their means), but so that I won’t have to focus energy on managing her assets and can focus on her needs and on my needs (I too am — or was — an avid traveler/hacker), as well as the considerable work involved in shutting down and marketing their home.

    People who need help managing elders and their care — especially those who don’t live near parents — should look into Geriatric Care Managers (www.caremanager.org), a licensed social work specialty. I’ve hired one now to provide assistance in an emergency when I am out of town for a few days. This gives me a bit of breathing room to make short trips for work.

    Finally, when the dust settles check with the local Agency on Aging and/or an Alzheimer’s/Dementia group for information, ideas, and just a sanity check to make sure you’ve dotted all the i’s and crossed all the t’s.

    Sadly, this is something our generation will become very familiar with.

    • My best wishes to your & your family too. Do what you need, work when you can. And be sure to continue taking care of yourself.

      I’d like to add a few things…

      The Alzheimer’s Association (www.alz.org) has great resources which might be of use to you & your family while you are planning.

      If you can find a geriatrician who is accepting new patients, try to get your mom an appointment. Geriatricians take the necessary time to look at the total picture in a way other doctors can’t, and the specialize in care of older adults. They look at medication interactions, and might have some ideas on how to help your mom.

      The suggestion of a geriatric care manager is a good one if your family can swing the cost. It is pricey, but valuable to have a professional advocate help you sort the red tape.

      • One more thing, please prepare yourself for the possibility that your mother may get worse for the first few days or weeks at Happy Acres. She will be getting used to a new environment, she may not understand why she is there, she will be surrounded by new faces. It can be extremely disorienting. As the other commenter suggested, try to bring in familiar things from home to help with the transition. Use older photos, those are the faces she is likely to remember.

    • All the best JD. Fortunately I don’t have a lot of experience in this realm,.. yet.

      This article is timely for me since last night I was invited over by my father to discuss his will, POA, financial position, etc. He is currently in fair health at 67 years old, so he claims. One question that I had for him that he could not answer was about a living trust. I have heard from many sources that they are of great benefit in protecting family assets from nursing homes.

      Specifically MD, you mentioned:

      “Iā€™m investigating having a trust fund set up for my mother when she is widowed, not only to protect her assets….”

      Have you had any luck? Any other insight into how I can help my parents plan their future health and financial positions? My father has done pretty well with their money and they have made it clear that they want their assets to be passed on, shall they pass, which they never will! They are also thinking of NY LTC insurance policies which may have two much red tape to truly have value.

  20. JD,
    I am so sorry about your mom. I work in a locked Dementia ward in a local nursing home. We have patients right now that are younger than your mother, but have no idea where they are.It sounds to me that she is in exactly the right place to be. Your number one priority is her safety and care, neither of which was happening when she lived alone. There should be staff there that can help you financially (the office staff) and emotionally (social worker). My family also had to admit my father to this Dementia ward while I was working there. Being staff and family at the same time was extremely challenging!!! He passed away a year ago, and the care and concern and love he received from the staff was of great comfort. Yes, it is a sad place, but at least you can sleep at night, knowing she is being supervised…..Please let us know how it goes.
    Tricia

  21. My great-aunt and great-grandmother both had dementia. If I should go down that road as well, I want my children to be as loving and caring as you all are to your mother.

    God bless you and your family.

  22. One small suggestion. If your mom hasn’t been evaluated by a board-certified geriatric specialist, you might want to try that. They can often find subtle issues that cause altered mental status that elude internists and other, highly qualified, but not specialized doctors.

    • I’d second this.

      Also, oftentimes, the mix of medications can add whole layers of issues as well. When taking more than one at a time, especially if they’ve been taken rather randomly, all sorts of unique to that person side effects can appear. Get someone with experience in this area to knock it down to the absolutely needed medication before SLOWLY adding any others on, and only if absolutely indicated.

      • This is so true. My mother went from twenty to six. Her bloating disappeared and her memory got better.

      • Yes, they’re tweaking the meds. It seems to have helped some with the confusion, but not nearly as much as we’d all hoped.

        My brother arrived just now, and I watched Mom use some subtle “tricks” to obfuscate the fact that she has no idea what’s going on. Kris had told me she was doing this. For example, when asked if she knows the date, she’s learned the one place in the room that states the date. With Jeff just now, she just said “J.D. told me but I forgot” even though I hadn’t told her the info Jeff asked about.

        Anyhow, meds are being tweaked.

        • It’s hard when they’re so smart. One of my greatuncles hid his increasing memory loss for years with tricks like those – losing his short term memory made him need help, but it didn’t make him stupid.

          Hope this transition goes well and the memory care folks can help your mom be happier and safer, JD.

        • It is no different than any of us do online. We learn the best search terms to find the thing we need at the second we need it, because then we don’t have to remember it. Be glad your mom is so tricky!

        • I am about a week and a half late on this, so J.D. you may not see this, but my mother is schizophrenic. After living in hotels and god knows where for 10 years, she is finally on court-ordered meds and in an assisted living facility. It’s been 2 years and she’s nearly back to her old self. A truly astounding transformation! We were lucky that my grandfather (her father) set up a trust for her care that pays the bills, which are steep. The first year (including 10 days in ICU and 6 weeks in the hospital, then 3 months in a transitional facility) was over $150k alone. I wish you well, and know that good doctors and facilities can make a real difference.

    • I was going to make the same suggestion. While she may not be able to live independently a gerontologist or geriatric nurse practitioner may have ideas about her care and medications that a general care physician, no matter how good, may not know about. It sounds like you have covered all the bases but has your mom had a recent head CT to evaluate the condition of her brain? When my mother in law was suffering from Alzheimer’s and had a fall where she hit her head she had a CT which showed significant brain atrophy. This helped to differentiate between ischemic (lack of oxygen) brain disease (like might occur from strokes) and the deterioration from Alzheimer’s disease. Also, there is an online store at http://www.alzstore.com that has a lot of products and books that may be of help to you, your mom and the rest of the family. There are some really good books that help kids to understand what is going on with the person with dementia. Best wishes to you and your family as you navigate these difficult times. Your mom is blessed to have a family who is working so hard to keep her safe.

  23. JD,
    This is a tough situation but you all seem to be handling it in as straight forward a manner as you can.

    Your legal documents and planning are a great first step. Your Mom is lucky to have a great family to take care of her in her time of need.

    My family went through this with my father last year; saw him through major cancer surgery, hospitalizations and ultimately through home hospice care until his untimely death.

    Stay close to your brothers as you work through all of this, the larger the network of providers the easier it is on all. And it won’t be easy. But I am sure you know that.

    Best wishes to you and yours,
    Tony

  24. We are caring for my chronically ill mother. Here are a few things that we have learned.
    It has to be a team effort (which you all are doing),BUT the entire team does not have to be there for the entire process. We take turns. We found that when everyone was involved in every situation- the entire team broke down. I fly in every six weeks- but call daily. My sister does the finances- which can be cared for weekly once they are straightened out. My brother brings in food. Another brother takes her to church. We still go on trips (mine are all to my mother’s). Everyone still needs to make a living and have a life. Skype has become a best friend.If you don’t give yourselves the breaks you need- resentment will really get out of control.
    Sorry to say- you are probably in for a very long haul. Come up with some sort of schedule as soon as you can.
    Don’t be surprised if you decide to move her after the first few months- pretty typical….
    And know—we are all pulling for you in the end!

  25. hi j.d., i don’t know if i have commented before, but i just wanted to thank you for your honesty and openness. i have been struggling with my real life lately, wondering what everyone else does…why when things look like they are about to turn up, they crash and burn. why drama just seems to crop up out of nowhere in the middle of a perfectly wonderful summer. in some weird way, it makes me feel a little bit better to know i am not the only one “going through it” right now.

    i am so sorry to hear about what’s going on with your mom. i wish you and your famiy all the best. take care of yourself.

  26. J.D. I am so sorry to hear about your mom! As much as I love to read your blog I, and I think all your readers, know that your life comes first. I’m sure your family will get through this.

    May I add my two cents? (I have worked in assisted living communities for a number of years and my mother has worked exclusively as a Registered Nurse in a skilled nursing facility.) Any items — pictures, bedspreads, pillows, knick knacks — that would be a comfort to your mom should be brought to Happy Acres. Anything that can make her new home feel like her old home will surely help in the transition.

    I wish your whole family the best of luck. It sounds like you all have your ducks in a row! I applaud you for having a POA and living will already drawn up. All of us at GRS are here for you!

  27. JD, This comes from experience. You need to be very aware of her nutrition. The homes/care facilities do their best but do not have the time to really ensure that your mother eats enough nutritious food. The only persons in these facilities who actually get proper nutrition are the ones who have family or advocates coming DAILY during meal time.

    • Thanks, Jan. That’s good advice. Anything is going to be better than where she’s at now, though. She has a cupboard filled with a dozen boxes of granola bars, and they’re her primary diet. (Her second choice? Hot dogs. But she gave up on those when couldn’t figure out how to work the microwave anymore.)

      • You might be surprised by how much she improves once she has someone making good nutritious food for her. My grandma completely turned around once she was placed in a home that took care of her day to day needs

  28. Prayers for you and your family J.D. Your mom is a lucky woman to have children and family who care so much about her.

  29. JD – I’ve been a fan of your site for a while. Thanks for the warning that your columns might be delayed for a bit; but I’m sure I’m not the only fan who is glad to hear you’re taking care of your family first.

    I’m sure it’s already been done, but has anyone looked at her medications to check to see if they have dementia as a side-effect when taken in combination, over-dosed, or stopped suddenly?

  30. Wishing the best for your mother and your family. I hope my siblings and I would be able to pull together as you and yours have should my parents need it. It says a lot about your family that you and your brothers can handle this with your mother’s needs first.

  31. in the song “everybody’s free (to wear sunscreen),” it was said that when we grow old, the more we need the people we know when we are young.

    you also take care sir j.d.

  32. JD, I am so sorry to hear about your mom. My father’s health is failing and he and I have had some discussions, that you never look forward to, lately. He worries about my mother and how she will fare after he leaves this world. His mother suffered from dementia and a variety of other issues that led to her demise. He has had a glimpse and it troubles him and all of us.

    None of this easy to deal with. Please take care of yourself and your wife in this time. Prayers offered to you and your family.

  33. so sorry to hear about your mother. don’t worry about the site, there are more important things to take care of. good luck and best wishes.

  34. I am very sorry to hear about your situation. I hope your mother settles into Happy Acres as best as possible.

    Maybe let a guest editor helm the ship while you take the time you need?

  35. So sorry to hear about your mom; I wish her and your family all the best. But you and your family are to be congratulated for pulling together on this–it sounds to me like you are doing an altogether admirable job. Thank you so much for sharing your experience so that the rest of us can learn how to handle these life events.

    Best wishes.

  36. We went through something similar with my grandmother a few years ago. She really had no diagnosis except for “dementia” which was, as in your case, code for we really have no clue what’s going on.

    One thing that helped and that we were surprised to learn… my grandmother had a raging bladder infection that appeared to have gone undiagnosed for quite some time, Apparently this can release all sorts of toxins into your body and make dementia-like symptoms worse. Once her new doctor treated this, her mental issues improved greatly, they didn’t go away, but the change in her was incredible. It was really even sadder, though b/c by that time, her body was in total decline and now she knew. Before they treated the infection she didn’t really understand.

    Anyway, I just want to say that and I also recommend getting her evaluated by someone board certified in geriatric medicine, if you’ve not done so. We were all shocked to learn that something as seemingly simple as a bladder infection had caused my grandmother such horrible problems.

    Good luck to you, it’ll get better.

    • Oh yes, this is great advice!

      I posted below about my father’s transition to assisted living (Alz) and how that didn’t go well. He was hospitalized shortly afterward because his behavior was not typical and he wasn’t sleeping.

      The assisted living place was asked if they thought he had a urinary tract infection (at the suggestion from a cousin who works in elder care) and they dismissed it. At the hospital they did test him and there was an infection.

      Presumably your mother has had that checked, but good advice nonetheless.

  37. Hi there. I happened to run into your article. I am a doctoral student in clinical neuropsychology. My mentors are clinical neuropsychologists-they specialize in the assessment, diagnosis and treatment of disorders of cognition and behavior -everything from Alzeimer’s and Traumatic Brain Injury to Autism and Bipolar. They get their referrals from psychiatrists and neurologists and family doctors who want a clearer idea of what their patient is suffering from so they know how to treat them. It is not ok that your mother is not getting a proper diagnosis-I can’t imagine how hard that is on you and her and your family. How can any place treat her if they don’t know what is wrong? I am a student for one of the best neuropsychologists in the state of AZ. Even if you are no where near AZ,let me know if you want me to find a neuropsychologist in your area.

    • I second this comment. I’m not a doctor, nor do I play one on TV, but we have a distant family member who had major dementia/ psychological problems, and she was treated for YEARS as a schizophrenic– except that none of the meds worked. When she finally got some better medical care, it was discovered that she actually had MS… A proper diagnosis is critical.

      All the best to your family in this difficult time, JD. I know it is not easy. Let the blog slide for a while. Your readers aren’t going anywhere.

  38. I went through this with both of my parents, although they were very elderly, which is different than your situation. The constant emergency calls, the lack of reliable diagnoses and even worse care options can really take a toll on everyone. For me, it became at least a half-time job.

    One thing I learned which I hope will help someone else. If your parent is on a variety of medications, try to get a consult with an internist who is trained in “integrative medicine”. They seem to be more aware of drug interactions. For 3 weeks I stayed every night with my mom while she went insane as the sun went down–called “Sundowner’s syndrome”. No one could pinpoint what was wrong.

    Finally, I got another doctor to look at her medications. This doctor immediately pinpointed a cardiology drug she was taking (amnioderone sp?), took her off it and put her on digitalis and presto, after 3 weeks of abject terror, Mom was fine. It was stunning.

    A thorough medication review second opinion is well worth looking into.

    • While I am happy that her mental status is improved, please be very aware that amiodarone and digitalis are not interchangeable and have very different functions. Her cardiologist needs to know about this switch too. She may now be essentially untreated for her cardiac needs. Additionally, digitalis has a narrow therapeutic range and is easy to inadvertantly overdose and end up with an extremely low heart rate which may manifest as an unexplained lack of energy or a change in mentation. Amiodarone is also commonly prescribed for potentially fatal arrhythmias which digitalis will do nothing for although they both treat a different non fatal arrhythmia. In other words, make sure the original problem is still being adequately treated.

      • Thanks Gaylern. I was speaking about the past–my mom is now gone. However, the switch was successful and she survived for 2 more years, until 90. My point, though, was that older people can have unexpected reactions to drugs, particularly small, light weight women. Drug sensitivity and interaction is worth looking into if people begin acting strangely for no reason the doctors can pinpoint.

  39. Good luck, JD, I hope you and your family continue to pitch in and help out and hope your Mom finds peace. My wife’s parents are going through a very, very similar situation with her Grandmother. They haven’t put her in a facility for whatever reason (even though that would be the best thing), so the care has fallen to my in-laws. It is close to a 24/7 job like you said. They get little help from the siblings and it has definitely worn down the family bonds.

    One suggestion – sit down for an hour or 2 with an elder care attorney. They do this for a living and may find something you have missed.

  40. There’s not much to say that others haven’t already, but it sounds like you’re on the right track. I spent the better half of the last two years helping my mother with some health issues, and you do have to do right by yourself.

    Work and travel can wait a bit. You’ve got a portable job, which helps a lot, and as long as you take some time for yourself to decompress, it’s ok to step back from the rest of life to spend time with your mother.

    I wish you luck.

  41. I’m sorry to hear about your Mom. As others have said, it is never easy.
    You mentioned your Mom’s cats- I hope you find good homes for them. Also, if your Mom misses her kitties, check and see if Happy Acres allows pet visitors. Many places allow this and it makes a real difference for the patients to interact with animals. There may even be a pet therapy program or maybe you could even start one?
    It sounds trivial but you’d be amazed at the difference it makes!

    • This is very true. When my mother was in a nursing home (for almost 3 years) I brought my two dogs to see her several times a week. Not only she, but many of the other residents absolutely loved the pet visits, which were encouraged by the nursing home staff.

      It is amazing to see even the most unresponsive patients brighten up when presented with a dog or cat to touch and hold for a few minutes.

  42. Best of luck to your family JD and mother. My father suffered from Alz and his transition from my mother’s care to an assisted facility did not go as well as we’d hoped (though he was in his 80s) and he ultimately ended up with skilled nursing. I suppose that’s just part of the process.

    Fortunately for us, my parents (at my mother’s insistence and hard work) had their financial and legal house in order.

    I would second the suggestion to take your time with things that don’t require immediate action. My husband’s mother passed away suddenly and the 3 children seemed to rush thru some decision making and ended up selling the family home and its contents too quickly (Dad was moving to their FL condo near his sister) in hindsight.

    I would also caution about the arrangements concerning her finances. Another road bump for my husband’s family was that his sister was the ‘caretaker’ of their father and his money (he is unable). She had/has financial issues of her own and the situation has gotten quite complicated (with a sibling summit scheduled for Labor Day weekend).

    A very stressful and sad time in our lives….best wishes to all of you.

    • Re acting slowly with unloading homes and contents: very true. My sister and I, juggling crises, gave most of our parents’ things to Goodwill, since it was easy.

      We regret it now — it would be nice to have Dad’s desk — and we should have just put everything in storage until we could deal with it.

  43. All situations are different, so it’s hard to comment with specific advice. My mother passed away last year from cancer. The two most valuable pieces of advice I can give from my experience are:
    1. Ask for help, and then take it. Just b/c you CAN do something doesn’t mean you SHOULD or HAVE TO do it. If you run into a tougher than usual day and need a break just b/c, ask someone to step in. And I found both my mother’s friends and my own friends were more than willing to help in any way – I think it was nice for everyone, Mom included, that it wasn’t just family involved in those final years. I also looked into some free seminars at the hospital on home care and taking care of loved ones with illnesses.
    2. There were hard, hard times. Times that I resented being there, followed immediately by times of guilt for the resentment. Times of extreme sadness. Anger. Frustration. Etc. With all of that, I wouldn’t trade those 3 years for anything. Find the joy in your relationship, find the love for your mom and from your mom – and try as best as you can to keep that focus.

  44. I’m sorry you are going through this. Realize this is very common. We have similar stories (my dad died in his 50s, my mother started to decline soon after and passed at 63). Try thinking of the situation a little differently. Most people lose a parent and spend the funeral talking about how they didn’t have the time to do this or that for their parent. Look at this time as an opportunity to return some of the care you received to your mother. People also go looking for ways to serve and make the world a better place. Again, you have an opportunity here–it’s no less noble just because it’s your mother and you feel like you ought to help her. What you and your siblings are doing is meaningful.

    That said, you all need care also. Some suggestions–
    * Develop a schedule where one of you is the on-call person each day. Divide it up however you want (day by day, a week at a time). Switch days when schedules change, but make the schedule and stick to it. And make sure her living center has the schedule also. You can’t always be waiting for the phone to ring. It’s too stressful.
    * Indulge your feelings when helping her. If you want to help but feel the need to stay busy, that’s a good time to take care of paperwork or household duties for her. If you really want to spend time with her, don’t feel pressure to accomplish something on the ever-present to do list for her. Just visit with her.
    * When you find yourself unsure of what to do for her, or at odds with your siblings about something, ask yourselves what she would do. What advice would your mom (or dad) give someone else in the same situation? That’s a clue to how she would want you to handle things.

    I’m all for pushing through stressful situations and living your life, but remember that our lives have seasons. I think it’s better to embrace the season your in–all seasons have good moments and learning opportunities and you don’t want to miss them. If you end up postponing your travel, don’t feel bitter. England will still be there when you’re ready to go. And it might be a wonderful way to start the next season of your life.

  45. JD, I’m not a doctor, but it sounds as if your mother has alzheimer’s. Have you taken her to see a specialist for that? I have a relative that has exactly the same symptoms you describe your mother is experiencing. The diagnosis can’t be completely confirmed until a brain biopsy is done as part of an autopsy. A diagnosis should be able to get your mother on the proper medication needed to slow the progression of the disease. Sometimes memory loss can be attributed to reduced dopamine. Don’t give up on the medical analysis yet.

  46. My own mother is 63, and I can’t even begin to imagine what it must be like for you, JD. I hope that with medication and medical supervision your mother improves. You and your family have my sincere condolensces. Take a break from the blog if needed, we won’t hold it against you.

    On a personal finance note related to this topic, I would love to see more advice and articles about Long Term Care insurance and whether it could help people in siutations like your mother’s. It’s an area of personal finance I don’t think has been hit on enough, given the extreme cost of assisted living facilities and the likely hood (1 in 3 odds) that we will end up in a nursing home.

    • Me too. I have a Long Term Insurance policy and I have been toying with stopping it and just taking the $150 per month and putting it in another savings account.

      Thanks, JD, I am going to check the fine print about dementia.

      But I would love a more in depth understanding of this insurance. I need to call my benefits person since I totally understood it when I signed up, but I have forgotten all the details. Need to find out and write it down.

    • My father signed up for LTC insurance about 13 years ago through USAA. He thought they would be covered. My mother is in an Alzheimers unit. John Hancock will not pay the $100 a day ($73,000 lifetime limit) because they say it is not Skilled Nursing, it is assisted living. Assisted living is not a medical term. It is a marketing term and differs from state to state. My mother’s unit is locked, operated by licensed nurses. They are not allowed out of the unit unless escorted and signed out. They get complete care including recreation. She will never go to a skilled nursing facility unless she breaks a hip or something really really serious. The skilled nursing unit in her complex is like a circle of hell. Every TV is on, the aides ignore the patients and the patients can walk out if they are sneaky. My father escaped from there last winter. The nurses line up the patients in wheelchairs in front of the nurses station. They all nod off together. When she is dying, hospice will come to her in her unit. So she will probably never use the $73,000. She does have a Home Health Care provision. That was for $50 a day for people to assist you in daily living at home. There was a 90 day exclusion period. They are allowing that to be used in the assisted living situation. But, there is only an $18,000 lifetime limit for that. So, my father died thinking my mother was being taken care of, which she isn’t. Her income from pensions of $43,000 is not enough to fund her $92,000 expenses. She has Tricare which is a great insurance, but we still have to pay about $1800 a year copay for meds, $600 a year for depends, and out of pocket (recently $7400) for dental. When her money runs out and she might apply for Medicaid, she would have to be in the Skilled Nursing Unit. We will not go that route, no matter the cost to us, but that happens to many people. I am appealling the decision to John Hancock, but would really like to find a Health Care lawyer. Ann

  47. Best of luck with your mother’s health. This can’t be easy, but your mother is very lucky to have such supportive children and in-laws.

  48. Hi JD,

    So sorry to hear of your mother’s relapse and ongoing struggles with mental illness. Thank you for sharing your experience, because so many are afraid or uncomfortable to do so. Telling your story helps others break down barriers to treatment.

    The National Alliance on Mental Illness (NAMI) might be a good resource to help you and your family figure out what’s next for mom, how to best advocate for her and how to work with the doctors to find an appropriate diagnosis. There should be a state/local chapter in your area. They’re very knowledgable about the resources available in your area, and may be able to help you navigate/understand the options available to you.

    Good luck. We’re all cheering you on and standing behind you and your family.

    • I second the recommendation to contact NAMI. They have a free 12-week class for friends/family of those suffering from mental illness, called “Family-to-Family”. It’s a great relief to know you’re not alone and there are others who are coping with similar family issues.

  49. I read your post with tears in my eyes. So much of what you wrote was familiar to me having spent the first twenty one years of my marriage helping my bipolar mother-in-law function at her highest capacity before she died last year of lung cancer. The checkbook register was so familiar; even the handwriting looked familiar.

    After it became clear that Mama B couldn’t stay in her own apartment (even with daily visits from support workers and family), we reluctantly arranged for her to move to an assisted living facility. She was only 62 years old.

    She was very unhappy and resented the restrictions on her freedom.

    On the other hand, she was able to be so feisty and cranky because she felt better physically than she had in years. And we didn’t have to worry about fires or floods or overmedication which were frequent occurrences in her apartment.

    A basic routine, caring staff, review of meds, and good nutrition might bring substantial improvements to your mom’s health. And, if it does, she might still not be happy with the change in her living circumstances.

    I wish you and your family lots of grace and patience to have the best relationship with your mom regardless of what happens.

  50. Good luck with this. It’s very hard and consumes lots of energy and time. But, providing good care to family, young or old, is rewarding in its own way. At least I feel that it’s the right thing to do in my situation, as it sounds you do as well.

    This is a good reminder to me to do the same for my mother, who is in poor health and is facing another surgery in the next few months.

  51. Family comes first. Do what needs to be done. Don’t worry about the blog. We’ll be here when you’re able to be back.

  52. This is such a difficult situation. We had a similar experience with my mother in law, who became mentally (and physically) debilitated after a brain tumor surgery at the age of 58.

    As she deteriorated, we had to change accommodations for her. Her husband left after a few years (she was doing pretty good then, but he didn’t want to be a caregiver anymore), so she became our responsibility. She went to a retirement home, then assisted living, and she is now in the ‘alzheimers’ unit of assisted living. They have no idea if she has alzheimers or not, but it doesn’t matter. Facts are, she has very little short term memory and behaves erratically, so she needs constant supervision. The why is irrelevant at this point because there is nothing that can ‘fix’ her.

    If your experience is like ours, you will find great relief in knowing she is being looked after all the time. We don’t have to run to the rescue constantly anymore, and her home is right down the street from us. I know it is hard to take someone out of their house, but I really think you will find it to be for the best once you get through the transition phase.

    Good luck…

  53. What an incredibly personal post. After having been an avid GRS reader for several years, I feel as though I know you personally. Family is most important – take care of Mom. The GRS community will understand if you miss a few posts šŸ™‚

  54. I am so sorry to hear about your mom. It sounds like your family is prepared to handle this, which is better than most.

    If it makes you feel any better, my grandfather moved into assisted living in the past year due to many of the same reasons. Now that he consistently eats healthy foods and takes his medicine when he is supposed to, he seems to be doing much better. I hope that the same applies to your mother.

  55. JD (and family),

    Best of luck taking care of your mom. My grandmother also had “dementia” and hasn’t been a part of my life for many years.

    Take care of yourself as well as your mom.

  56. Take care of your family first and everything will work itself out one way or the other.

    I feel your situation. My mother suffers from severe mental illness and is out of touch with reality. In your fortunate case, you have found a good place for her. My mother doesn’t speak English and is too mentally unstable to be placed in a care facility. She has no money either so she lives in her house and my sister who is nearby just does her best with her. Mom stopped paying her bills last year, but we had the POA in place years ago so that was a saving grace.

    Take care!

  57. This is a very tough situation, and my prayers are with you. My mother is also mentally ill; though it’s a mixed blessing, I’ve actually found that it’s easier on me as a daughter because she has always struggled with mental health, so I’ve been spared the pain of watching her shift from capable to not. It sounds like you’re doing everything possible that you can; best of luck to you.

  58. My thoughts and prayers are with you and your family at this time. I think in cases like these, there are no right or wrong answers, but it’s GREAT that you and your siblings are in agreeance.
    You have to all put aside your thoughts and all and see what’s best for MOM and this place you described sounds pretty good (albeit) expensive.
    My grandfather had the same symptoms and he had dementia…I would tell him something, and two seconds later he wouldn’t remember and ask the question again….but if you asked about a time in his childhood, he spoke of it like it was just yesterday. Sad to see it, and I just wish there was something that could be done to fix it, but no cure yet.
    Your mom may be bored in there and want interaction so visiting often is key….even everyday. My mom was out of work when my grandfather went into a place like that, so she got to go everyday. When she went on vacation, I went everyday after work. He might not have remembered the people being there, but it does brighten their day.
    I wish you the best in this road in your life!

  59. I’m sorry to hear about your mother. Good luck to all of you in dealing with this.

    Regarding her finances, talk to the lawyer who set up her previous paperwork. He or she should be able to establish a medical trust with your mother as the sole beneficiary. This money can then be used for her medical care, and once it draws down, she should be eligible for Medicaid (and then Medicare).

  60. My grandfather just passed away after 3 years in an Alzheimer’s care facility. His diagnosis was not Alzheimer’s, but just a general age related dementia that left him unable to make the day to day decisions such as your mom.

    Our experience – get through the urgent things now. Unless you have to sell the house to pay the bills immediately, going through the belongings in the house can wait. Yes it’s a huge task and a lot of work but if there’s no reason why it has to be done immediately then let it wait. Focus on your mom and her care first.

  61. For information on the sets of decisions related to caring for aging parents, the column that Jane Brody wrote for a while at the New York times had some great information, especially on the financial implications of different care choices.

  62. Thanks for your thoughts everyone. Just loaded a bed, dresser, and nightstand from Mom’s house and am headed over to Happy Acres. Also managed to log into her accounts. She has enough money to last for a while, which is good. Tried to call the credit card company to cancel the two ID Protection services, but they won’t let me do it. Will have to call the services directly. Will go into her bank later today to talk directly to somebody about using the Power of Attorney.

    Most shocking/amusing thing so far: Found a letter from the bank telling Mom that her $286,000 ATM deposit wasn’t valid! šŸ™‚

    • I had to help a boss use a POA a lot. In general, the company we wanted to talk to had to send us a form to complete and fax back with the POA. It took a little time, but once they had the papers, it wasn’t a problem.

    • These ID Protection service charges for credit cards are insidious. My USAF Intelligence officer father got talked into one for $13.00 a month. He only charged $60 a month on this card for gas, so it was next to useless. The credit card company wouldn’t let me cancel this charge even with a power of attorney. So I cancelled the card. These companies make it really difficult during times of personal duress. I was trying to order a casket cover of flowers for my sister in law’s funeral as a gift from my parents during their last illnesses (I had two in diapers). We couldn’t possibly attend the funeral two thousand miles away. The 1 800 flowers “grief counselor” gave me a really hard time because I didn’t want a card to accompany the casket cover. She kept saying they wouldn’t know who it came from. She also couldn’t guarantee that it would be delivered by the day of the funeral which was on a Saturday. When I complained to 1 800 Flowers, they sent me a card for a $25 credit. Why is everything so difficult? Ann

  63. Oh, J.D. I am so very sorry. You’ve joined a club no one wants to get into. Luckily, if there is such a thing, you have two brothers in the area, a supportive wife, and supportive sisters-in-law, who will all share the (considerable) burden that is and that will come. I hear of too many people who are only children, or who are estranged from siblings, who have things much worse… I worry about myself in the future too, since I have no children, no nieces or nephews…
    We went through this with my Grandmother and it is indeed a most terrible thing to see a once vibrant person robbed little by little of her essence until she is a mere shell. May I offer a few suggestions?
    1. Don’t correct her. If she thinks you’re her next door neighbor from 30 years ago, let her think that. (Don’t worry, she’ll think you’re someone else tomorrow. Try to see the — gallows? — humor in it.) Trying to orient her to time/place/who you are etc. is really more to make you more comfortable than her; correcting her will only upset her and make her more agitated.
    2. You MUST MUST MUST take care of yourself, your marriage, etc. No more of this “I got 13 hours of sleep in 4 days.” You’re no good to anyone if you get run down and sick. Eat right, exercise, get lots of rest, talk to your friends and family, get lots of support. If someone offers you help, take them up on it. This is a marathon, not a sprint, and you have got to pace yourself. Draw up a schedule with your siblings, insist that everyone have some absolute “days off” unless there’s an emergency. This is CRITICAL. While your Mom may have short term gains, in the long term she will only get worse, never better, and you have to be strong to prepare yourself for the long haul.
    3. Consider all the 5 senses as other means of communicating may fail. As my Grandmother lost the power of speech, which was incredibly frustrating for her, we tapped into other senses as means to communicate with her. We took the favorite time of her life when she was happiest, her 20’s, and played music on a little CD player from that time (big band music). You should have seen her face light up. I brought in the cologne she wore as a young woman that was her favorite, and put it on a hanky for her. Put some light lavendar scent on a pillow to help her sleep. Brought in her favorite chocolate to tempt her appetite. Colorful pictures of Europe from when she was a girl on her wall — in fact, lots of colorful anything anywhere to counteract the institutional blah of the nursing home. Brought in an ultrasoft, strokably, touchably, irresistible throw (labelled with her name) that became almost her pet blanky. You get the idea.
    And when all else fails, just hold her hand and tell her you love her.
    Good luck to you. God Bless.
    • I truly agree with point #1. My grandmother lived to be 104, dying in 1997. For a lot of her last decade, she appeared to be living quite happily somewhere in the 1930s. Be whoever she needs you to be.

  64. Hey, JD, family definitely comes first, don’t worry about us, we won’t mind if you miss a few posts. Your family is in our prayers.

  65. You have my sympathy, J.D. Happy Acres sounds like a good, safe place for your mom right now; however, I strongly recommend that you keep looking for a diagnosis. Is memory loss a typical facet of her mental illness? Of course, I don’t have all the facts, but the situation seems strange — and it’s easy to get so caught up in the avalanche of decisions to be made that you don’t put enough emphasis on getting to the heart of the matter. I speak from recent experience — my father-in-law just spent almost a month in a rehab hospital trying to correct the cognitive deficits arising from multiple brain surgeries, before anyone noticed that his cerebral shunt had stopped working and he had a brain infection. Oops. I’d guess those little problems explained at least 50% of the cognitive deficits.

  66. I am so sorry for your family and your mom. I have been in that place with both parents. I highly recommend that you stop in at the assisted living facility at varying times of day to see how the care is. (Even early morning) If either of your parents was a veteran, check out the “Aid and Assistance” benefit—-it is little known but designed for those unable to do daily care. If mom doesn’t qualify now, she may at some time in the future, and the application procedure is lengthy. Godspeed.

  67. Really sorry about it. Life is like that. It takes its own turns and twists. You can just slightly navigate it while holding on to the rail for a dear life.

  68. First, JD, so sorry for this situation. Many of us have been through variations of it, and all I can say is, hang in there, and remember to take care of yourself as well.

    Second, how wonderful that you have put your own financial house in order, because it truly gives you the flexibility you need right now to take care of your family. It has given you that wonderful gift, time.

    Third, if you can’t travel now, you can travel later. You are still quite young and you have been taking steps to make sure that you can live the life you want to live. Part of that is travel, but it is clear from many of your past posts that another part is making sure that your mother and extended family are ok. This is another part of THAT journey.

    Fourth, remember Kris and your brothers’ wives. I have often observed that the in-laws in situtions like this get a lot of the work and a lot of the blame if things are not perfect. Remember that they are suffering this loss as well.

    Blessings to you all!

  69. Wow, I am so sorry you’re having to go through this. Also, it must be difficult to make this post, but I hope you know that it will be very helpful for people going through the same things to piece out what’s going on. So thank you very much for posting.

    My dad was just 62 when he died two years ago, and it was devastating though not at all a surprise. He didn’t take care of himself — he hadn’t exercised one bit in probably 15 years, and although he changed his eating habits near the end, I think it was too late, as he had already had 3 or 4 heart attacks/strokes by then.

    My mother is homeless, and though we’ve tried to track her down, she remains aloof.

    I guess the summary is that I’ve never had to deal with this, and probably won’t have to on my side of the family. My husband’s parents — perhaps, although it seems so far away. But who knows?

    I guess the moral of the story is, having learned the hard way from my parents’ bad examples about financial (and life) management, for my eventual kids, I will try to be more organized. But you are right that it is a very tough thing to think about.

  70. Nor am I a doctor but I agree with above comment – do some research into Alzheimer’s disease.

    Also (and this is very controversial but I’m a great believer in natural medicine) do some research into aluminium as a cause. The link between aluminium poisoning and Alzheimer’s disease has not been proven, but is worth considering.

    My own mother avoids aluminium (she is 74 and still mentally and physically fit). Not exactly proof but it’s worth trying – 63 is far too young to go ga-ga.

  71. You’re certainly not going to lose this reader if the blog content is a little thin while you work things out for your mom. We’re all hoping for the best for you and your family.

  72. Reading this gave me chills as my sister & I are living the same thing with our mother who is only 57. She has vascular dementia from a series of strokes. There are several pieces of advice I can give you. 1st off would be to get in touch with a social worker. I had done months of research & made numerous phone calls trying to find care for my mother & a social worker was able to listen to our situation & make recommendations in an hour that were a perfect fit. I would also say to take it easy on yourselves. Nobody, not your spouses, other relatives, etc. will understand this situation like you & your brothers. You will vacillate between feeling like you have dementia yourselves to feeling guilty for being so short with your mother to feeling angry that your lives are being turned upside down by things out of your control. There will also be a period of grieving as the relationship with your mother will never be the same (as you’ve already been experiencing over many years of mental illness). In addition, mental disabilities are very hard for others to recognize because unlike other physical illnesses/handicaps, to the outside world the person looks completely normal. Praying for your family as you navigate these next few months!

    P.S. I would also add you need to take your mother to the nearest Social Security office in person as well. The SSA does not recognize a POA so you will have to have her fill out a form in person allowing them to discuss her SS with family members. A gov’t. agency that doesn’t recognize a legal document? Don’t even get me started!!

  73. JD,

    I’m so sorry to hear about your mother. I’m glad you have supportive brothers that you get along with. There’s lots of people out there wishing you the best.

  74. J.D.

    I’ve gone through the same with both of my parents, who had Alzheimer’s. It’s heartbreaking. One thing that helped in our situations is that I went along with everything my parents believed and never tried to correct them. If they said their (long, long dead) parents were coming over for a BBQ, then I was just as excited about it as they were. People with Alzheimer’s have a new reality, need to believe in it, and it can be a real trip for us too. It was fascinating and sometimes charming to see what kinds of things my parents dredged up from their past and what kinds of things they “invented” as their new reality. Go with the flow.

    I chose to continue to live my life in CA (my parents were in TX) and would visit my parents every few months because they were being cared for by others. I deeply regret that decision. The last month of my mom’s life I was with her night and day, and it was an intimate and life-changing experience. I wish so much I had moved to TX to take care of both of them during their years of Alzheimer’s. No one can take the place of a child nearby for comfort, no matter what age. I would have learned so much more about my parents and also would have given them much more comfort than others could have. I feel selfish now. And believe me, when my parents died, I had no idea how much I was really going to miss them until it actually happened.

    As a mom myself, with two sons, I feel compelled to say that I really doubt your mother would have liked to have her checkbook published on your blog for thousands to witness her Alzheimer’s. Give your mom her dignity. We all know what messed-up checkbooks look like and we know the symptoms of Alzheimer’s. You don’t need to show hers. Just a thought.

    All the best to you and your mom and family.

  75. JD:

    Been thru nearly exactly the same thing. My mother began acting ‘differently’ at about 69. Every time we saw her we would notice that she would be a bit more removed from conversations, react differently to situations, and interact in ways that we would not identify as our mother. As it turns out, my Dad had noticed long before we did, and was both covering some of it up, as well as trying to find answers himself.

    Eventually, when it was no longer a question of if she was ill, my father began discussing the situation. It was also clear that he was supporting her quite a bit. Diagnosis was essentially like yours, which was aphasia and dementia. Yes this was frustrating, as aphasia is a symptom, rather than a cause. She was specifically not diagnosed as Alzheimer’s, which in some respects was a relief. Later, a brain scan confirmed that her condition would be progressive, as edema, suffered from and related to her chronic lung issues for years, had also impacted her brain.

    Mental health conditions are among the worst, as they put a significant burden on the patient as well as the family. My father became more and more stressed, as he became the sole care giver, eventually having to bathe and feed my mother. We finally convinced him it was time to seek help, which he resisted for a very long time. He got some part time help, in the form of an “adult babysitter” which was a start but much less than he needed. Fortunately, he had power of attorney through my mother’s living will, as well as long term care insurance, but he didn’t have a plan or even limits in mind for when it was time to move on.

    We children tried our best to move him along, and eventually, he realized that he could no longer be the primary care giver, and we all worked to get my mother into a home. This is where planning comes in, and something that we had not done: getting into the home you want means waiting, in our case, nearly two years. Two years of him being primary care giver. It was brutal. In the end, it also required my father to move to be near his wife. He decided on a community that offered living care at all stages, meaning he moved into a detached house, with no care, in the neighborhood, and my mother moved into the community nursing home. While the next year was a sad one for my family, as we watched my mother decline in health daily, it was a relief to see the stress drop from my father, and see his health (and attitude) rebound.

    My mother died a year later, and as my father said at her funeral, we grieved for her years ago, and now it is over.

    However, shortly after, my mother’s brother, my uncle, began also showing signs of dementia. His condition, while similar, would not have anything close to the same cause, but we worked hard to convince him to move to the same facility as my parents. Again, there was no plan in place, nor even wishes. Waiting was required, but in my Uncle’s case, there was no other care giver as he was a bachelor. We tried our best to check on him and make sure he was ok, but clearly tasks of daily living, such as eating and washing clothes, were wanting in the last months. Eventually we were successful in moving him, but sadly, he died shortly after the move, for unrelated reasons. As the executor of his estate, i can tell you that not having an up to date will, a living will or even power of attorney in place is a huge nightmare for the family, and everyone reading this now take this as a lesson:

    Talk to your parents and relatives: insist on their updating their will, including their wishes in the form of a living will, and establish conditions for power of attorney. Do this today or by this weekend.

    Also, discuss their desires for care when their family can no longer provide it. Don’t let them assume that their children will take care of them: that is selfish and unrealistic. Instead, visit homes, and facilities, and decide ahead of time. Decide when is the right time. Make this part of their expectations for their later years, rather than ‘something you have to do’.

  76. Your story JD sounds very similar to what I went through my grandmother. She is 83 and I am 33 and her POA. (My mom, grandmother’s daughter, lived in France and they were estranged for a while but are now on great terms so that is how I became to POA.)

    Your mother’s symptoms sound like my grandmothers. She had her electricity cut off because she forgot to pay the bills. Didn’t file a tax return for 5 years. Couldn’t take care of herself or her apartment or two cats and a dog. She would go days without eating…she eventually weighted 84 pounds at one point for her 4’10” frame. I stepped in and took control of everything with some help from my now husband and brothers.

    I took my grandmother to the doctor often and they kept saying it was just old age. Then finally dementia. Then finally Alzheimer’s. (Alzheimer’s runs in her family.) I would hazard a guess your mother will be diagnosed with Alzheimer’s possibly in a year or two. The disease is VERY frustrating and painful for numerous reasons but the one that sticks with me is that every Alzheimer’s patient is different. There are no natural progressions or stages like with other diseases like cancer. It is a horrible disease.

    I highly suggest a assisted living facility with memory care! That is where my grandmother is and it is $4,500 a month but well worth it. But it is a 5 minute drive from my mother’s house. The staff are good to her (they call her Mrs. Woods since she loves Tiger Woods) and she has made a few friends. She gets her medicines regularly and is back to a healthy weight. It also gives my family a great peace of mind that I don’t have to worry about her not eating, falling and being alone, or wandering off and becoming confused and lost.

    Would she rather be living with us? Yes, but that is not possible since we could not give her the round the clock care and safety that she needs. But the facility can and we still regularly see her. Don’t beat yourself up. You and your family are doing what is best for your mother. It is hard, I know, but keep at it! Best of luck to you and your family!

  77. I am so sorry to hear about your mom. We went thru the same thing with an uncle. I have been doing this senior care for 30 yrs and have tons and tons of info to help you manage the situation and get a handle on it. You can email me if you would like help, and I will share my phone number. This can be time consuming and expensive if not organized. Anyway my help is offered, and wishing you the best in this situation.

  78. I completely understand what you’re going through, as I’ve been through the same with my grandmother. Seeing that checkbook gave me a bit of a shudder – looks exactly like my grandmother’s own shaky handwriting.

    In 2008, she started showing signs of dementia, but nothing so egregious that we were able to do anything about it. (Fortunately, she had already given up driving years earlier.) For the next few years, things were well, very bad at best as her cognitive abillities declined. I contacted lawyers and social services, and was told that I was basically out of luck until something actually happened, because she was not a danger to herself or others. We lived 2,000 miles away and she decided that as long as she could pick up the phone and give me a call, then she didn’t need any help of any sort. I was on the receiving end of dozens and dozens of phone calls a day – this precluded me from being able to do anything else – work, school, anything, because my phone was constantly ringing.

    We were able to sneak in some help (that she insisted she didn’t need) under the guise of her handyman “going on vacation” and “his friend/business partner” (in reality, his girlfriend who had a ton of experience with eldercare) coming in to take care of things while he was gone. That at least gave me a respite of a few hours a day where the phone wasn’t ringing, but my life essentially belonged to her for 3 years. In August of last year, she fractured her pelvis and that was what finally got her into a care center permanently. The fracture essentially blew the last fuse in her brain, and she doesn’t even remember the condo where she lived for 20 years prior to the care center. (Fortunately, it doesn’t seem to bother her much, either – it would seem whatever is left of her consciousness is protecting her, and for that I am grateful, as she had repeatedly accused me of wanting to just “stuff her in a nursing home and forget her.”)

    Work *together* with your family. No one person should take the brunt of this – it’s incredibly unhealthy and I know this from my own experience. I am just now getting used to the idea of having my life back now that she has a team of pros looking after her. Once the initial dust has settled, try to live your life as normally as you possibly can. If you only visited with her once a week before she was at the care center, don’t feel like you have to pop in every single day. If you have a trip planned and things are stable and other family is still in town – take your trip. Be there for her, make sure she gets the help she needs, but don’t let it completely consume you – it’s not healthy for anyone.

    • Wow, CDC72. Your story really resonated with me as it is almost identical to what I went through. Except she did establish me as POA early on thankfully. My grandmother fell and broke her shoulder and after she came out of surgery had completely lost about 25 years of memories. It was so weird how fast so many years were gone but thankfully she still knows and recognizes us family.

  79. So sorry your enduring this but while you were obviously lucky to have a wonderful mom who raised very great kids, she’s lucky those kids are taking care of her. Bravo to you

  80. Family trumps everything and we will all be tuning in whenever you have time to actually write. Just take care of yourself. Good luck and my very best wishes to you and yours.

  81. Best wishes to you and your (amazing) family during this insanely difficult time. I’m so happy you got the things done you’d mentioned when you did and they’re providing relief of some sort. There’s so much fantastic advice in all of these comments, I have nothing to add except my support and well-wishes for you and yours.

  82. Speaking of the title, there’s a really great company called A Place for Mom ( http://www.aplaceformom.com/ ). It’s a referral service that helps prep families with as much information as possible about the eldercare options in their area. It sounds like you’ve already got a great place, but maybe another reader can use it.

  83. Good luck. This is a hard road and there really isn’t much uplifting to say about it. (Both my parents had dementia, and my mother had a co-existing mental illness which made her diagnosis and treatment extremely difficult. You have my prayers.)

    “You don’t have to win the argument with a dementia patient” is a useful thing to keep in mind. Kept me sane when my mom was upset with me about one thing or another.

    Since Mom and Dad were both sick at the same time, my sister and I put our lives on hold for five years to deal with it. I closed my business, her kids didn’t get the kind of parenting she wanted to give them. You just do the best you can, and don’t beat yourself up about it.

  84. This is a heartbreaking situation to go through. I am in a similar position and have been for about 5 years, though my mom has a terminal illness but the results and stresses are the same. My mother is of sound mind but needs care, as does my 95 year old grandmother whom my mother cares (or rather cared) for. The burden of both have fallen on me and have seriously derailed my future plans and life in general. Being 30 years old and living at home is not where I pictured myself when I had completed college, gotten a stable job, and started my life. Now, the guilt of leaving is crushing, the debt that has piled up is more than I could imagine, and it’s created a situation where I resent being the person stuck in the middle but I also can’t bear to leave and watch them struggle alone.

    I have no solutions or advice. Just know that others empathize and that you are not alone in your struggles. Focus on your family, the rest will happen one day at a time as it always does. Best wishes.

    • My heart goes out to everyone who has had their plans for life go out the window because of needing to care for their parents. The thing that makes me so mad is that in a socialized health system you would not have so many expenses or problems. The US health system is so messed up.

    • Wow! You have taken on a lot. I hope you get some respite.

      You are in my prayers. Bless you for caring for your elders

      • Thanks for the thoughts. It is what people do for those they care about. Someday, when I lose my mother and grandmother I will not be the person wishing I had had more time. I will know that I did the best I could for them and that is enough to keep me going right now.

  85. It cannot be streesed enough: if you even think that a situation like this might develop in your family, you’ve got to do advance planning.

    –See a lawyer and/or a financial planner who specializes in eldercare. Assisted living, in-home care, and nursing home costs are horrendous, and can deplete savings very quickly. If someone is in a nursing home for years, at a cost of upwards of $100,000 per year, even large nest eggs will disappear.

    –Become familiar with Medicaid requirements, and, if you’ve got the time (at least 5 years) put legal and financial safeguards in place. Medicare WILL NOT pay for long-term care past 100 days, and Medicaid has a 5-year “look-back” period on any financial dealings. And, given current budget woes, further restrictions are likely.

    –A power of attorney is a necessity, and will make life very much less complicated.

    –There is a large and growing industry of eldercare “consultants”, some of whom do very little except take your money. Be diligent!

    –As others have stated, do not feel shy about asking for help, and take it if offered.

  86. I’m so sorry J.D. My thoughts will be with you and your family as you work through this crisis.

  87. Wishing you and your family good luck. I have been there before. Lost a parent in their early fifties. The illness and dementia started in their late forties. Not easy.

  88. I am a fairly new reader and have never commented before, but I just wanted to say I’m sorry to hear that about your mom. I am going through something similar with my own mom, and you have my sympathy. It’s a tough situation for everyone.

  89. It’s so hard when suddenly you have to make these decisions for other adults- especially parents!

    But thank God that you guys have to manage her affairs and purge her house because she’s moving, not because she passed.

    What a lucky man you are to have a spouse willing and able to help and support you during this time.

  90. Now at the hospital with Mom, and she shows some improvement. But it’s this improvement that makes things so hard. When she’s aware of her surroundings, it’s easy to think, “Oh, we don’t need to put her under anyone else’s care. We can take care of her. Or she can take care of herself.”

    Yet every time we think this, and every time we act on it, we end up with a crisis. That’s what makes this so heartbreaking, I think.

    At the same time, though, even Mom isn’t putting up a fight this time. In the past, she’s been very resistant to the idea of doing anything but living alone in her house. This time, she’s resigned herself to the idea of living somewhere else. It’s as if all of us — Mom, the family, the doctors — finally understand what needs to be done.

    Hm. On the other hand, maybe things aren’t that improved. Mom just said, “I’ll need to get…” and then trailed off. It took her more than a minute to find the words she wanted: “…some money from my checkbook.” We’d just talked five minutes ago about how she didn’t need to worry about the money because we’d take care of her finances for her. So, her short-term memory is still problematic and the aphasia is still there.

    It’s strange how I grasp at the faintest glimmers of hope…

  91. J.D.,
    Thoughts and prayers are with you during this difficult transition. It’s never easy, and there’s just no way to fully prepare for it.

    My father is 95, and ensconced in a very nice assisted living community that has the continuum of care. If he needed to be in the nursing home, it’s part of the same system. Our mother died about 7 years ago, so it’s just my brother and I doing this (no kids for either of us). It’s a four hour drive for me (Mn to Ia), and my brother is in Texas, a plane flight away, so I’ve done quite a bit of the hands on stuff.

    My father did get the LTC about 10 years ago, which pays the majority of his expenses. He’d have the funds to pay otherwise, but this will cover him for about 3 years while his investments continue to accrue. Having said that, his LTC company has some really serious organizational problems. Thankfully, my brother and I are very tenacious when it comes to dealing with them. We think others just give up. This would be an excellent topic to pursue down the road (when things even out and quiet down).

    Others have talked about making her apartment as homey as possible. I’ll concur. Having so much of the look from his house makes my father feel at home. He eats well, and we did sign up for the medication administration option, which gets his meds taken properly (was not happening at home, despite his insistence), and has daily interaction with the staff, who are very friendly and competent.

    Our bottom line is that he’s safe, and that is such a relief for my brother and I.

    Remember to pay attention to your own self-care, as you need to be healthy and rested for the responsibilities at your end.

  92. Sorry to hear about your mother’s condition. My family went through something very similar in the last few years with my grandmother and it was really tough for my dad and his 4 siblings. Each of them (and their partners and kids) made huge sacrifices in order to devote as much time to their mother as they felt they needed to, and I don’t think they have any regrets about that time. Dad spent a fortune flying back and forth from Germany (where he lives) to Australia (where his parents were) to assist with moving them into aged care, being with them etc and I don’t think he regrets a penny of it.

    Obviously there are conflicts with everyday life, but this is one of those situations where you will not regret spending more time with your mother rather than less.

  93. J.D
    My prayers are with you and your family during this difficult transition of life, but you doing right things for your mom and your family.

  94. My mom passed away in February of 2011. For the last three and a half years (since my dad died), my sister and I had to go through all of the things you are going through now. We split the responsibilities – Lori was the one to follow the doctor visits and medications and I took care of the financial matters and services she needed. I have a few pieces of advice. 1) Take care of yourself! I am currently suffering from depression because I put everything I had into Mom. 2) Sell the house NOW. She cannot go back there because it is a danger to her. If she improves, try assisted living. The place Mom ended up was a godsend. They cooked for her, gave her meds and made sure she took care of hygiene AND called us when there was a problem. 3) Make sure all of her children and other family members understand what is going on, but make sure they understand who is in charge. Family interference can make your life hell. 4) Let the guilt go…you will have to take things away from your mom and make decisions about what she can keep from her house and what she can buy from now on. It will be the hardest thing you’ve ever done. Acknowledge that it will hurt, seek the support of your family and let it go. Grief is crippling and keeps you from doing what you have to do. My blessings to you and your family. I’ll keep you in my prayers.

  95. Perhaps the most frustrating thing about this entire process:

    There’s no consistency in the care providers. Always a new internist or psychiatrist or neurologist or care co-ordinator. Each seems unfamiliar with what the last one said or did. Each has different standards. Most want to take the past of least resistance and simply want to move on to the next patient.

    This experience is teaching us to advocate loudly for Mom’s well-being.

    For instance, on Monday the doctor said he wanted to keep Mom in the hospital for observation for several more days. But a couple of hours later, the care coordinator was calling to tell us she was going to be discharged immediately (which is why I flew home early from my conference). We had to stand up to her to get her to stay. The same thing happened yesterday.

    Just now, the care coordinator came in. I told her we needed paperwork filled out in order for Mom to be admitted to Happy Acres. She was very reluctant to take the paperwork. Yet the hospital is insisting on 24-hour care when Mom is discharged. They are the ones telling us to put her in a facility. The facility won’t take her without the paperwork, yet the hospital is hesitant to fill it out — or, it seems, wants to shunt it off to somebody else to complete. Nobody wants to take responsibility for anything.

    So, we have to push. We have to stand up for her or we’re just going to end up where we were before. Judging from my followers on Twitter, others have experienced similar problems.

    I suppose I should be using my time here at the hospital to write my past-due article for Entrepreneur. Instead, I’m wanting to set down my thoughts about what’s happening.

    • That’s appalling, especially as I can only imagine what the hospital are charging you šŸ™

    • Good luck, JD. The bureaucracy of the healthcare system is beyond ridiculous. The sad thing is those folks probably want to help you, but are fearful of a) getting sued or b) not getting paid.

    • Yes, our healthcare system is maddening. Without an advocate, the person who is not well is screwed. And it takes so much energy to be an advocate and to figure out what’s best among all the incompetence — energy that one would rather spend getting well or on the sick person. So sad and frustrating.

      Good for you for prioritizing taking care of your mom. You won’t regret canceling or moving trips or conferences to be there for her, as she was there for you in early life (weird how life is all a big circle). And don’t think of trips as being canceled – just moved or bumped by weeks or months, should you have to juggle the England trip around.

      I also wish you well with finding a solution for the cats. I’m sure they would love to live in your amazing home šŸ™‚ If I were sick, the most stress-relieving thing someone could do for me would be to make sure that my cats were well taken care of.

    • It’s likely that certain doctors have relationships with certain facilities and get tangible or intangible benefits from sending people to those facilities. I’ve worked in a nursing home as well as worked with hospitals trying to get people discharged and seen it over and over. It’s very shady but you can fight it, just insist that she go where you want her to.

      Something like this is why I strongly recommended trying to get connected with ongoing mental health services. It may be too late if she is going into a facility but in general people like me help to coordinate and advocate in this situation. We do home visits, notice slight changes in mental state, provide counseling, coordinate with psychiatrists and doctors, and advocate for the person when they are hospitalized, making sure information is shared and transitions are smooth. I work for a community agency that provides services to the very poor but you can certainly hire a private company that specializes in “care coordination.” It seems like it would be money well spent.

    • It’s more than maddening. It’s infuriating. After my husband’s back surgery, not a single one of the new doctors writing his prescriptions got them right. I had to carefully check each one and then go back to the surgeon’s office to get it corrected or tell the pharmacy what he should be taking and ask them to call the surgeon for correction.

      If I hadn’t been able to remember exactly what he took, how often, and in which dosage, he would have been taking the wrong things. How difficult is it to check the chart and write the correct prescription?

    • This is unfortunately true in any serious health care situation. And if the patient’s condition is chronic or deteriorating (read-they can’t cure the patient) there is usually no coordination at all. More of a “move them along” mentality. (our child has cystic fibrosis so I’m very familiar with the bureaucracy you’re facing)

      Start a binder and keep detailed notes of EVERYTHING–medications, doctors seen, recommendations, copies of admittance and discharge papers, etc. The family member who’s “on-call” for her should always have it with them. Keep a calendar in it to mark any future doctor’s visits (she’ll have them in the care center) and everyone’s numbers. I would also keep a copy of any living will type documents she’s prepared in it.

      It’s seems fresh in your mind now, but in 6 months if a doctor says “I think she has “x” and I want her tested,” you’ll be able to look back and know if she was already tested for X and by whom.

    • JD, a good care coordinator will work with you AND happy acres to make the transition seamless. If your mom needs a TB test they should do the test and x-ray in the hospital (it’s common practice).

      The doctors should be providing Mom’s medication list, even if it will change in the coming months. You should be able to get her medications from the house or refills from the pharmacy to provide Happy Acres.

      And, this is really important, if she has any family jewelry (valuable or no) that needs to be secured, do it in the hospital. Say hospital procedure and have someone in the family hold onto it. Once you get to Happy Acres it could disappear or get lost immediately.

      For my grandma we bought her a fake cheap ring that was very similar to her prized cocktail ring. she didn’t know the difference and we didn’t worry about her losing it or being robbed.

    • Unfortunately, your experience with the hospital is normal. The patient is assigned a coordinator for the doctors. Doctors rotate in and out. My mother was in for a week- saw three different internists, two cardiac people and three kidney people. Not until my brother stood up to the last doctor did the coordinator figure out that they had to work on her meds! Her family doctor was not only not informed of what was going on- but was not ALLOWED to know from the hospital. We had to call him!
      CRAZY!
      As far as the Happy Acres thing. The reason for the hesitation is that IF a patient is released to a care facility Medicare has to pay for it for the first number of days (http://www.medicare.com/assisted-living/skilled-nursing-facility-care.html) Unfortunately, I am not sure she is old enough for Medicare.
      Once again- I HATE the current state of US Health care.

  96. My husband and I were the first of our circle of friends to go through this with first one then the other of his parents. Later my parents and step parents went through it, taking us with them. There is no answer. Sometimes the financial aspects are overwheming. Don’t count on an inheritance– the nursing home or other faciity may get it all, as they should if they provide the needed care. Long term health care insurance should be considered before it’s too late.

  97. JD – Family first. We understand.

    You will not regret missing posts so you can spend time with her.

    We will be here supporting you.

    -Charlotte

  98. We went through this with my MIL, and I want to say that I’m very sorry that you are going through this right now when your Mom is so young.

    I want to echo the thoughts of others and tell you to take care of yourself, be prepared for her to go downhill very quickly when she moves into the new facility (being taken away from what’s familiar will cause her to lose ground more quickly).

    My MIL was in a nursing home for 4 years, and by year 2 she didn’t know who my husband was anymore and said she wanted to go home, but she meant to her childhood home where her parents were…it was devastating for my husband to go through.

    Good luck and know that we’re all here for you while you go through this…

  99. JD, I completely sympathize with you. I was very interested in your post on caring for aging parents, and then on July 9th my mother had a stroke. She was just moved to a nursing facility yesterday (they also have a memory care unit), and now we are looking at “what to do with mom,” since she is extremely underweight, and losing her memory as well. Thank you for the reminder on how important power of attorney is; my dad is 95 and my brother is mentally ill, so that leaves me. I will discuss it with him today. Good luck with your mom.

  100. JD, thoughts are with you and Kris. It is so nice that your mom has a great, loving family to be there for her when she needs you most.

  101. Please post your thoughts if this community can be of any support to you. We’re all thinking about you and your family.

  102. As frustrating as not having a diagnosis is, sometimes there just isn’t one. We have to deal with what is happening. As a nurse, I see this all the time. My m-i-l is going thru the same thing. We tried Assisted Living close to home, but the cost was so high we had to look into alternatives. Thank God Mom was a veteran. We were able to get her into assisted living at a VA facility for nominal costs. It was 3 hours away, though. The first year was hard. She was homesick, thought she was in a hospital and wanted to come home. We got so tired from 6 hour trips every day off. Eventually she came to think of the facility itself as home, and things are better. The sadness is our OWN feelings of how we, as cognitive adults would feel if we were there. I have to remember that. She is actually adjusted, and finds purpose (however impaired) in being able to “help” her fellow patients. This is her “job”. She is “needed”. As far as expenses, each famimly is different, and you of all people will be able to work that out. You are getting an education, for future posts, and someone out here with the rest of us will be able to use your knowledge. I hate you have to go thru this. My heart is with you.

  103. I am sorry to hear about your Mom JD. I am in a similar place myself with my Mom right now and it’s definitely not easy. If Mom is settled in and safe in Happy Acres, you should definitely consider keeping your vacation. Let your brother be “on call” while you’re away and you can do the same for him. You NEED to take breaks and take care of yourself during this incredibly stressful time. It is not selfish to take care of yourself – it is necessary. If you run yourself into the ground, how would you be able to help her then?

    Also, the financial advice that comes from going this type of situation is invaluable!

    Hang in there – have faith things will work out for the best and try to breathe, and keep a sense of humor.

  104. Hi. I am posting because this is similar to what my mother is going through (she is in her 50s and has had a slipping memory since I can remember.) I really hope you find out what is going on!

  105. Thank you JD, for talking openly about mental illness. There is still so much stigma against it. It’s hard because mental illness can seem so invisible, and so impossible to get your own head around.

    Good luck with your mother in the future and make sure you fight her care battles for her at the hospital.

  106. Oh JD, this is very said. You’re incredibly lucky to live close and have family around as well! If/when my parents run into medical issues I don’t know what we’ll do, as all of the kids are a plane ride away and don’t really have a lot of ability to leave our jobs/homes for any extended periods. I’ve been burying my head in the sand on that issue for years and have been lucky so far, but it’s bound to change at some point. Thanks for the reminder that we need to be aware and ready to act.

    The trips will wait – if you’re constantly worried and on the phone to the US it may not make sense to travel. On the other hand if she’s stable, it might be a good window to go before you get locked into a care/visit/maintenance schedule.

    I’m sure you will continue to do your best, and that’s what is most important. Good luck.

  107. First, like many others, I wish you all the best as you work out this challenge. I know how difficult this is because 9 years ago my Mom and Dad died within 9 days of each other and for the month before they died, Mom was in a coma in the hospital and Dad was in the Retirement Center, unable to be on his own. I spent that month living in the Retirement Center as well, caring for him and visiting Mom every day. I know how difficult it is to give up the life you want to live, but I also know how important it was to Dad that I was there with him. More than any other advice I could give is the statement that whatever happens with your Mom, you will never regret the choice to be there for her. Because once she is gone, that is what you will remember.

    All the best – RMW

  108. J.D. – So sorry to hear about the latest circumstances with your mother. It really is so tough to deal with on an emotional as well as a financial level. You are very lucky to have good family support and everyone banding together to look for best solutions, or at least the best immediate actions to take. My mother-in-law had dementia and cancer in the last of her life and my three sister-in-laws basically washed their hands of any decision-making or financial assistance leaving my husband and I to sort it out. She died three years ago, but we are still picking up some of the pieces. All the best to you, your family, and your mom. Hang in there and take one day at a time as best you can.

  109. Hi, JD. I’m sorry to hear that your mom is doing worse. I’m a social worker specializing in older adults and severe mental illness so this all sounds very familiar to me. Without reading the other comments yet, here are some things that may be helpful to you:

    1. Did they check for a urinary tract infection? This can cause a delirium (similar to dementia) in older folks and they often don’t have classic UTI symptoms and so don’t get diagnosed. It’s common for people who already have some mental instability, like your mom, to have this misdiagnosed as dementia.

    2. What did the hospital recommend upon discharge? Truly, they should not ethically discharge her if she is a danger to herself. They should have kept her until she was stable. I would strongly recommend that your family continue to push for a more concrete explanation as to what’s happening. Either she’s experiencing an increase in psychosis or mania due to being off meds (I can’t remember if her dx was schizophrenia or bipolar) or she is having some organic problem (dementia, delirium, injury). If it’s the former she needs to be kept safe until she stabilizes at which time she may be able to return to independent living. This can take several months on steady meds sometimes.

    3. If your mom is able to deal with being home in the evening, a day program may be ideal. There are day programs for mentally ill adults, people with dementia, and both. A lot of higher functioning people enjoy attending these and often there is a van service for them. There are usually groups, meals, and activities.

    4. If the problem is psychiatric in nature your mom may be eligible for services such as Assertive Community Treatment, or similar services (they have different names in different states). Your county mental health office can provide info. In this case she would be followed and visited by a mental health professional or a team of them. This has been shown to reduce hospitalizations dramatically and help people to live independently much longer.

    5. At some point, unless your mom has a lot of assets, it might make sense for her to “spend down” what she has and apply for Medicaid. Usually you have to have less than $2000 in assets to be eligible, and an income less than $800 per month or so (though if her income is less than $1800 she can probably qualify, with some caveats). Having medicaid opens up a lot of options for mental health treatment that private insurance just won’t pay for.

    Feel free to contact me if you have any questions and I will try to help.

  110. Thanks so much for writing this honest account, J.D. Hope the next few weeks go as smoothly as possible for your mother and your family.

  111. J.D.,
    Thanks for sharing this aspect of your life with us. I wish you and your family the best with everything over the upcoming weeks.

  112. Wow, just wow. I knew things were going on back home this weekend, but I had no idea.
    It sounds like everyone is doing their best to take control of the situation, but it’s tough.
    Thinking of your family during this time.

    Toni

  113. This book may help:

    A BITTERSWEET SEASON
    Caring for Our Aging Parents ā€“ and Ourselves
    By Jane Gross

  114. JD, I’m so sorry you have to go through this. What’s amazing to me is how many people are in similar situations and how little organized help is available. There was a report published by AARP two days ago (“Valuing the Invaluable”) on the actual cost of the “free” care being provided by family members, estimated at $450 billion in the US alone. Its worth reading, and I think it answers some of the questions raised in your “Caring for Aging Parents” post awhile back.

  115. Please take the time and do what’s best for you and your family. And don’t forget to take care of yourself. And as much I enjoy reading your site, if it falls a little behind what you have planned, don’t worry…we’ll be here waiting when you can do what you’d like for it. I know it’s your income, however, I think we all understand you’re in a rough situation.

  116. 1) Keep a notebook of her medical records. You should take notes on what doctor says what and when (to quote back to the next guy who never bothers to review the chart) and include the following:

    *test results
    *drug information – both current and historic, including dosage information and dates prescribed
    *Illness history (and what drugs prescribed)
    *Primary doctor in each field. You’ll see who is on call while in the hospital, but it should all feed back to a routine doctor for each specialty.
    *General care information for whichever of your siblings is taking charge at any point.

    2) Services are often hard to find, but they are there if you just keep looking for the person who knows. When my grandfather was in assisted living the hospice hooked us up with all sorts of random services and volunteers down to a volunteer harpist who plays for people who are dying. It’s a community and you need to ask questions and get your foot in the door. Your local social services and mental health office is a place to start.

    3) You should also have a familiarity with SS Disability and any long term care insurance/pension/etc paperwork so as you see these doctors they can give you what you need while you have their attention.

    4) Find a local support group for children taking care of parents. They will be great moral support and a wealth of information. This is a roller coaster that will change your whole paradigm and it’s a comfort to be with others on the same ride.

  117. J.D., I’m so sorry to hear about your mom’s ill health.

    My grandmother is slowly losing her memory. She seems to be capable of taking care of herself (for now). But my husband and I are planning a visit, and I’m secretly terrified that she will have some kind of crisis while I’m there, and I won’t be able to handle it. My grandmother always took great care of me. I’m so scared that I will fail at taking care of her.

    You seem to be doing a great job of handling the situation, dealing with things that have to be dealt with. Please don’t spend your energy worrying about the blog right now; you have bigger things. We’ll be here when things settle down enough for you to blog again.

  118. A friend of mine had the same symptoms, he can remember things that happened in the fast but not the things that happened recently. He was diagnosed with Stage 4 brain cancer.
    I hope the doctors will find the cause of her loss of memory and and will be praying for you and your family.

  119. I am sorry your Mom is having these issues, although I love her attempt to increase her bank balance, LOL.

    One of the things that you have to do even though this is sad is keep your sense of humor. I didn’t have to go through this with my parents, but with my best friends family.

    I will never forget Jo, who when I was visiting told me that she was going to get married. She had a little crush on one of her caregivers, and was so cute when she talked about it. She didn’t remember a lot of stuff but was certainly still enjoying her life.

    I do find it interesting how many people have commented that their Mom/Dad want to go home to their parents house.

    I have another friend who is going through this now and she indicated that her Mom always talks about going home, and she doesn’t mean the house she has been living in for the past 50 years.

    Good luck, hang in there.

  120. I’m sorry your family is going through this.

    (Not to add anything to your plate, but when I try to visit the box site in Chrome, I get a malware alert from Google.)

  121. I am so sorry to hear about you Mom’s illness.
    I have been a long time reader of your blog, and a few years ago I serendipitously discovered a blog your Mom was writing for a while.

    It was a charming slice of life blog where she discussed her grandchildren, family gatherings, dinners she cooked, crafts she bought and her cats (I believe one was named Silver), all with photos. After a month or two of follwing it, I realized that she was GRS JD’s mom. It always fun to find a certain confluence out there in blogland.

    Tell her that she has one virtual fan in NY who enjoyed her blog and her pictures. I hope that she and your family find some element of peace and acceptance in the future.

  122. Wow, brother, that’s really really tough. I don’t know what to say except that you’re lucky your whole family is working together to get through this.

    Best wishes, and don’t worry about the columns and the blog, we’ll keep coming back as always.

  123. So sorry to hear about your mother =[

    My grandfather has Alzheimer’s and we just moved him into “memory care” this week. Trust me – you’re making the right decision. My parents and I have been taking care of him 24/7 for the last three years and it’s drained us financially, mentally, and emotionally.

    It’s hard leaving your mother at a facility like that, but with proper care and other memory-impaired buddies, she really will be better off than stumbling around confused on her own.

    Best of luck to you and your family!

  124. Do what you have to do. I went through this roughly 12 years ago with my mother luckily before it was a crisis. There is no easy time though, she felt she was giving up her freedom. It started with multiple car accidents, nothing serious until a serious near miss. She went up the off ramp of the freeway. nothing happened, however it triggered us to take the car away. That was the beginning of it. She was showing signs of dementia in her eighties. She lived a long productive life until nearly 98 years old. The last three years unfortunately were nonexistent for her.

  125. So sorry to hear about your mom. I just wanted to give you my two cents on the financial side because this is what I do for a living.
    1. If your dad was a vet during 1 day of war time service she is entitled to a monthly benefit to help with care of up to around 1200.00 per month. There are ways to properly get her qualified.
    2. If she needs LTC in a nursing home you need to work with a properly training medicaid attorney that understands proper asset protection. You can preserve 50% of the assets but will lose the rest in order to qualify. With your mothers age she will probably be looking at an extended stay.

    I am in Michigan but can get you in touch with the right professionals in different areas.

    Praying for your family. God Bless

  126. Sorry to hear of your familial situation… it is hard when the roles reverse and you become the caregiver/caretaker. Over 3 years ago, my journey into this realm began and I feel for you and your family… it is a difficult time. My only unsolicited advice is to remember to take care of yourself as well.

  127. You’re in my thoughts. Also you might be aware of this but Oregon has pretty decent laws on elderly care. If you can get your mother into a nice place, they are obligated to continue to keep her there and keep paying for it even after she runs out of money. I’m not sure how this applies to your situation, but we have family all over and sent a relative to Oregon for this very reason to live near family there. In our case it’s been more important that our relatives get into a nice place where they can be treated well for the rest of their lives rather than try to “save” any inheritance we might be getting from. The best inheritance is knowing your relative was well looked after.

  128. Wow, reading this JD brought back a lot of memories of placing my grandma in assisted living in 2007. She was only 77 herself and had advanced Alzheimers.

    There’s way too much to share here, 100 some comments down on this thread. But as the one who made those transitions, cleaned up the house, learned what to bring to the new home and what to leave behind and how to deal with it all with some degree of emotional and financial sanity – I understand what you’re facing.

    And if you’d ever like a guest post or some detailed advice from someone who’s been there shoot me an email.

    Grandma passed away in 2009 and that time of transitions is still very fresh in my mind.

  129. I’m so sorry to her about your mom. I watched my mom go through navigating the decline of my grandmother and how difficult it was on her and her siblings. Please take care of and be gentle with yourself. It is a stressful, difficult and heartbreaking time. To preserve your sanity and your relationship with your siblings you may want to make a habit of writing down and signing all of your agreements so everyone stays on the same page during this emotionally trying time. Miscommunications and poor expectation management made it a struggle for my mom and her siblings. Things were often remembered “differently.” It strained their relationships. I agree with those who have mentioned to keep pushing for diagnosis. Take care of yourself. My thoughts are with you and your family.

  130. Good luck in sorting everything out. It seems like you took a lot from the last post you had. Don’t be afraid to ask for help when you need it and remember to care for yourself as well as her.

  131. Sad issue for your family JD, but been there, done that. Seen Alzheimers 3x at this point & this sounds like early chapter for such. But then again, many types of Dimentia can come up with any age, sad to say.

    You’re clear minded & see the room and age of the folks there, but with your Moms condition she might not even notice such. In the last year I had to place my Mother is a simular place, but her situation is clear minded one day, not aware the next. As such, she was not taking her meds or meals correctly at times & in the year before, was hauled to the Hospital by 911 SIX times.

    Enough was enough & the family had her Doctor put his foot down and prevented her from leaving the last time till we had made arrangements for assisted living. It’s been hard on her since some days she’s very lucid, but those days are less and less as time goes by.

    My Thoughts and Prayers are with you and family JD & Kris. Most of our Parents raised us the best they could with Love & now we need to return the favor. Take Care…

  132. Wo – that is full on. It sounds like you are doing a great job of dealing with it all and I can’t begin to imagine what it would be like.
    For what it is worth, have you looked at multiple chemical sensitivity – http://heidiswapp.typepad.com/my_weblog/2011/07/my-craft-channel-announces-me.html – “By far, the most common symptoms are vague complaints: feeling tired, “brain fog” (short-term memory problems, difficulty concentrating) and muscle pain.”
    Then there are the naturally occurring chemicals in food and the ubiquitous unnatural additives. (http://www.fedupwithfoodadditives.info/)
    And toxic chemicals in our environment, our mouths, and our food.

    I hope this all gets sorted for you smoothly.
    Regards
    šŸ˜€

  133. jd
    i completely enjoy your blog. been an avid reader for a couple of years now. i’m so sorry you are having to deal with this, but at least you realized what is more important. take care of your mom.
    period.
    work will always be there.

  134. the symptoms that you mention are similar to those that were exhibited by my friend’s father, who was diagnosed with alzheimer’s disease. once, my friend’s father wandered out of the house and disappeared for hours until a good samaritan took notice of him. what i am saying is, your mom will need constant attention. i hope your mother’s condition will improve.

  135. We’ve been going through this with my usually-sharp-as-a-tack 93 year old grandfather, who suffered a stroke in May. Looking back, it’s clear to see his checkbook register going wonky in April. Maybe checkbooks should be examined by responsible family members monthly for everyone — it’s such a clear way to see how someone’s doing mentally. My FIL, in his mid-70’s, is always showing signs and it’s just so hard.

    In my grandfather’s case, we realized after the stroke that he hadn’t filled his blood pressure prescription in who-knows-how-long, which at least explained the cause of the stroke. He didn’t initially improve much and moved into an assisted-living apartment, but in the past month has begun walking unassisted, bathing and changing on his own, and doing other things he couldn’t begin to do in late May. It’s such a relief.

  136. my thoughts are with you JD. what a difficult situation.

    so glad that your Mom has you and yours nearby to take care of her, move her in a home where she is taken care of, and be there when she needs you.

  137. Conversation today as I was signing paperwork at Happy Acres…

    Staffperson: “Wow. Your family is organized.”
    Me: “Really? We feel unorganized. Doesn’t everyone do at least this much?”
    Staffperson, shaking her head: “You’d be surprised.”

    They actually want us to leave Mom alone for a couple of weeks so she can adjust to the new situation. I’ll go see her in the morning, but then Kris and I will proceed with our existing plans, which means we won’t see Mom for ten days. At that time, I’ll make a decision about whether or not it makes sense to jet off to England. If it seems safe, I’ll go. If not, that’s fine. Then I’ll have fodder for a post about sunk costs! šŸ™‚

    • There are no sunk costs in making a decision in the best interest of your family. Life happens and sometimes it costs money. Your mom and your family’s well being right now are worth whatever you may lose from not going on your trip.

      Perhaps you might consider visiting now during the 10 days you are here and using your time that you are away on the trip as the adjustment time?

      • Lee, I think you’re fuzzy on the definition of “sunk costs”. Sunk costs are expenses you’ve made already, and which should play no part in the future decision-making process. Definitions aside, I agree with your sentiments. šŸ™‚

        I’m on my way out to see Mom now. Will probably see her again tomorrow, too, but then I’m going to lay off for a week as the care facility has requested. Definitely will see her on August 1st, though, because that’s when her first follow-up appointment is scheduled for…

  138. So sorry to hear about your mother. This is the hardest. My mom is also having some memory issues, although not quite as bad. She is 66. It does sound like it is Alzheimer’s. I wish there was something that could be done about it… All the best to you and your family.

  139. I’m so sorry you’re dealing with this.

    Caring for elderly family members is a huge financial topic. Neither of my parents has long term care insurance or any considerable savings to pay for long term care. One of my parents actually works in a very posh private nursing home/assisted living facility and insists it is awful there and states the intention never to go into such a facility.

    This is big- what to do when the parents cannot afford their care? Especially when the parents indulged/were irresponsible financially during years when they could have saved or purchased LTC. Where do you draw the line between providing for your own kids and retirement and helping parents? Weighty stuff

  140. J.D., Thank you so much for sharing your story. Caring for an ill parent and mental illness are not easy topics for public discussion, but I appreciate so much that you’re helping to shed some light on these issues as a part of your work to speak honestly about financial issues. You’ve been able to write clearly and non-judgmentally about the situation and it sheds some light on some extremely difficult issues.

  141. If you love your Mother, you don’t need to worry about “Crossfit”, “Spanish lessons”, and countries you want to travel. I’ve spent 43 years hating a woman who started out Manic/Depressive after childbirths and is now permanently Schizrophrenic. Who wanted to kill us and burn down the house, etc, etc….And YES, all it would have taken is a nightly pill, which was quit because she was “feeling better”. Semi-annual week-long stays in Mental Facilities turned into a permanent Nursing Home residency 10 years ago.

    You’ll be F I N E.

  142. JD, my heart really goes to you. I went through something very similar – my mum’s decline lasted for four years (we are talking the serious stuff here) and it was probably the hardest time we have had as a family. Look after yourself and Kris, keep talking to a sharing with your brothers. Thinking of you!

  143. I’m sorry to hear this. I just had a couple of notes. I have dealt with 3 of my relatives having some form of dementia. It is absolutely no fun and it is really sad. Good days are the bright spots.

    1) This does sound like dementia. However, none of my relatives had other mental illness that could have affected their behavior or the doctor’s diagnosis.

    2) Two of my relatives, who had much lesser forms of dementia, seemed to do pretty well in an regular assisted living community. The other relative (my beloved grandmother) really did poorly. She was in an assisted living community that specialized in memory care also, but I don’t know how well it was rated. My grandmother never knew where she was since the environment was foreign to her (she was only there a year and her memory loss didn’t help the situation). She was often confused. She was sad. She fell alot while she was there, and I don’t really know why (she did not show signs of falling before living there). I am not sure how well all of the tenants got along since they were all in memory care; they were in different stages of dementia or the like, and I think behavior in some stages are far different from others (i.e. I am not entirely sure that any of the tenants were ever aggressive towards each other or the staff). I never had any issues with the staff. I think the key thing is to have family visit her as often as humanly possible and make sure that your mom is physically ok, even if you can’t tell if she is mentally ok. I guess you can also talk with the staff and get updates from them.

    Hoping for the best for your mom & your family.

    • My grandmother fell a lot in assisted living, too. I think it was a combination of impatience (didn’t want to wait for assistance for late-night bathroom trips) and forgetting that she couldn’t walk as well anymore. We finally started paying for an all-night “sitter”, which greatly reduced the falling (and the amount in her checking account).

  144. Take the time you need to focus on your family. Your mom is lucky to have a support network. I know it is a challenging time both from on the pratical and emotional front. Don’t forget to take a little time out for yourself every day to keep your equilibrium.

  145. Interesting story, and I’m sorry to hear what you’re going through. This reminds me strongly of my 60-year-old mother’s situation. Last year she was fired from her job after her performance deteriorated, which was followed by a long, confusing period where I was more or less piecing together her illness myself. Her doctors weren’t able to give any definitive diagnosis; they didn’t even diagnose her with dementia, but instead with mild cognitive impairment and generalized anxiety disorder. Initially it felt to me like Alzheimer’s due to what I perceived to be memory problems, and partially because that’s all I knew about then. She repeated herself constantly, which I later understood to be more a cognition problem than a memory problem. The combination of her symptoms finally led me to guess she was suffering from behavioral variant frontotemporal dementia. SSA agreed about her level of impairment, and I was later able to find a doctor at Johns Hopkins in Baltimore who diagnosed her with the same.

    It wouldn’t shock me if your mother were suffering from something in the same spectrum given her symptoms and age. The one thing that would need to be clarified is the memory aspect, because the short term memory concerns are a little bit different. This whole thing may also be related to her medication cocktail, which can cause myriad issues. My mom is starting to have some aphasia-related issues as well. For instance, one time she meant to say “orange drink” but instead said “orange sauce”. She also speaks much less than she used to. She can still drive (which I monitor each time I visit), but we’ll have to take that away from her soon.

    Best of luck and keep pushing. I understand complacence when things are right. If anything this disease has taught me the value of being proactive.

  146. You have so many comments that I’ll keep this quick: So sorry that your family is facing this challenge, J.D.

    One thing that we found to bring a lot of joy to my grandmother when her short term memory failed was a box full of old photographs from her life and family from way way back (she was born in 1926).

    It was amazing the stories she could tell us from back then, even if she couldn’t remember what time of day it was currently or whether she had eaten lunch. Using her long term memory successfully, and sharing her memories with us, was extremely comforting for her, and it gave her a chance to escape her current-day confusion.

  147. Sorry to hear about your mom. Hope you guys are taking care of yourselves as well. My grandmother had some health issues and it took a huge tool on the family. Hope she gets better and get the correct medical diagnostic at some point. She is still pretty young.

  148. Without reading previous comments , , , have the medical professionals checked that she does not have hydrocephalus? We thought my mother had early onset Alzheimer’s and it ended up she had hydrocephalus which can be treated with a tube inserted to drain fluid from the brain.

  149. What a challenge to see your parent deteriorate. My heart goes out to you. Way to go on getting things in order and taking the matter in stride.

  150. Sorry to hear about your mom. I read a great fiction book during our summer vacation that my MIL had recommended about a Harvard professor diagnosed with early-onset Alzheimers. It’s called “Still Alice” by Lisa Genova. You may find it strangely familiar to what you’re going thru w/your mom.

  151. J.D.
    I’m a PTA in a skilled nursing facility with an isolated Alzheimer’s/ Dementia unit. I would highly recommend any and all Physical, Occupational, and Speech Therapies insurance will allow. Therapy can improve aphasia and even retrain your mother to balance her checkbook. I’ve seen patients with a diagnosis of altered mental status return to home safely before, how much we can help just depends on what’s causing it. IF those services are offered in this facility and are covered under insurance definitely take advantage of them.

  152. This story is oh so familiar to me and my sister. Over the past eight years Mom became more difficult, “quirky”, vacillating between emotional extremes, and increasingly forgetful, not wanting to bath, or refusing to let people on the property to clean the house or mow the lawn, driving and crashing after losing her license, etc. All those years the family practitioner said she was fine. She really needed to be seen by a geriatrician who specialized in Alzheimers. After the diagnosis, so much of what we had been going through made sense. It caused tremendous stress having that delayed diagnosis made past the point when Mom could have made decisions (living will, power of attorney) to enable us to get the care she needed. We spent $14,000 in order to obtain conservatorship, money we could have used toward her care instead. She is in a wonderful place which does not just warehouse their clients. Still, it makes me sad to know this fiesty survivor of a pretty amazing life is forgetting us and that life. It is hard to go back each time and realize a little bit more of Mom is gone. What my sister and I have taken away from this-our wills, power of attorneys and funeral plans are completed, and we have shared with our children where the paperwork is, etc. Also, we share and write down as much as possible about our family history.

  153. So sorry to hear that chaos is overtaking.

    I haven’t had time to read through the comments but I immediately thought of my friend’s mom (She’s probably 65.) who has had a form of Alzheimer’s for about 13 years. It’s just gotten worse in the past two years. It’s not typical though. She had long-term memory up until about 6 mos ago when she may have had a mini-stroke. However, she is unable to dress herself, for a few years now she’s been scared of her husband. She refers to him as “that man is watching me”. Thankfully one of the daughters is loaded and they have part time live in care shared with my friend spending a lot of time with her. Sitting in a car her brain just doesn’t allow her to know what to do to get out. She wouldn’t even know where the handle was or what it did I don’t think. But that’s happened gradually over the past little bit.

  154. This might sound strange, but – don’t buy her new things for her ‘dorm room’.

    If you can get anything like sheets, pillowcases, bedcovers, lampshades, pictures for the wall or chairs that she has had for a long time, use those.

    With her short term memory gone, she will be very confused all the time – if she sees things that seem familiar to her, it might make her calmer and more secure in this new environment.

    This feels especially odd to post on a frugality website.
    Good luck.

  155. My mom had dementia and like yours, my brother and I had to move her into a long term care facility. Things that seemed to help her best included putting familiar things in her room and getting cards from old friends & family. As it progressed one of us had to be there to open her mail with her, but she loved hearing from old friends – and even the accumulation of mail made her feel appreciated. We also set up a weekly flower delivery – just make sure the facility is willing to throw out the old ones so they don’t collect.

  156. So sorry to hear of your Mother’s decline- I’d second the recommendation to make sure they’ve checked to see if she has a UTI. My husband works as an investigator for Oregon DHS Adult Protective Services and it’s amazing to me how many seniors he encounters who seem demented but in fact have a UTI.
    My MIL just passed away after suffering for years with Alzheimer’s. She was able to stay home with loving care from my FIL and SIL who lived nearby, but it was very difficult on them. Prayers for your family are on the way, JD!

  157. I’m so sorry to hear this, but so glad you all were prepared legally so that it was not as difficult as it could have been.

    My thoughts are with you.

  158. You have tons of support from your readers and I hope that leads to some comfort for you during this difficult time with your mom. Is they any kind of insurance you can get that will cover senior care facilities? They are certainly inevitable for all of us…

  159. I am sorry about your mother! It is indeed a difficult situation to care for aging parents.

    I have inlaws that are getting into this situation but they have NOTHING prepared financially speaking. What do you do for parents that have nothing more than Social Security? Maybe you could tell us the things that your mom doesn’t qualify for.

  160. JD, thanks for sharing this extremely personal insight into your life. I am so sorry to read about your mother; I do hope that she will get better!!! I am sure you’re all doing everything you can and taking the best possible care of your mother…I hope it will all work out well!
    Take care of yourself and your family…don’t worry about your readers.
    Wishing you all the very best!
    I’ve been following your blog for a while but have not commented before; GRS is one of my favourite blogs though šŸ™‚

  161. Thank you for sharing such an intimate part of your life. I don’t think any of your readers will care too much if you don’t post for a while. Just take care of your family.

    I hate to mention it when your family is going through such a tough time, but have you and your siblings considered possibly arranging long-term care coverage for yourselves? This could be a good opportunity to explore the issue with a post.

  162. I’m sorry to hear this about your mother…. My Grandmother also had dementia, and there was little that could be done, except to make her as comfortable as possible and protect her from doing harm to herself and others.

    So, please remember to remember the good times – as those memories will be the ones that will carry you through these difficult times….

  163. Hey JD,

    I am exactly where you are. My Mom is absolutely in denial about her condition as well as other medical issues. She just wants to do what she wants. I am kind of glad my Dad is not around to see her like this. Maybe he bailed because he saw it coming. My Mom is an ex opera-singer/diva so she really is very willful.

    Feel free to drop me an email. We can share stories and strategies.

    Keith

  164. JD,
    I don’t have anything constructive to add, just wanted to pass along my condolences. This must be a very difficult time for you and your family. Take good care of yourself.

  165. JD, I’m so sorry to hear about your mom’s condition.

    I’m sure they’ve probably already done this, but have the doctors checked for brain tumors? When my mom was about 44, her Breast Cancer spread to her brain for the first time, and although the surgery VERY luckily didn’t damage her brain, the subsequent tumors in her brain for the following 3 years would cause a lot of short-term memory loss, confusion, trouble finding words, occasionally garbled speech, etc.

    Once she was put in Hospice care (so she was no longer receiving treatment holding the tumors to a slow growth rate) last December and her 15+ small brain tumors started to grow quickly, she very quickly started mixing up words, was often confused/forgetting things, lost her motor skills (though this may be due also to the tumor on her spine), and fairly quickly her speech went from confused and occasionally garbled to completely unintelligible (to not being able to speak at all). She was only 47 — just noting this since your mother also seems too young for this kind of thing to happen “normally”.

    It doesn’t sound exactly the same as your mother’s situation, but I’d ask them to check for brain tumors in case. It could be that she has had a slow-growing tumor for many years (alone or along with some other issue), and it’s only now really starting to affect her badly.

    I hope you find out what’s going on soon, and my thoughts are with you and your family.

  166. You and your family (especially your parents) are to be commended. It is not every family who gets along so well during a crisis like this.

    I know from personal experience that even with a DGPOA in place, families/siblings who do not trust or get along with one another (even in “good” times) can make situations like this a living hell.

    The fact that all of you sat down in a restaurant and worked together to find a solution for your mom is absolutely wonderful, in my book.

    Your family will be in our prayers.

  167. JD, PLEASE READ THIS! My mother went through something very similar to this and it turned out that she had a urinary tract infection that was cleared up by antibiotics once we figured out what it was. To begin with, we had her hospitalized because she was in an altered mental state starting out from a car trip to and from Colorado, where she didn’t consume enough liquids or water for 5 days because of all the commotion of visiting friends and family. This, along with sitting in a car for hours, resulted in an infection that the gerintologist said was common amoung elderly women. It actually took all of May, June and July to have her go from vacation, mental memory loss and confusion, hospitalization, diagnosis, cure and home care. By August and September she was back to normal-or as normal as can be after having been put in a hospital with other very real mentally deficient patients.
    The experience was a scary one because my mother always spent her entire life at home taking care of my father and the entire family. We now try to make sure she doesn’t get overly tired with the grandkids and that she eats a good diet of fresh fruits and vegetables along with plenty of liquids.

  168. You have my sympathy and my empathy. My grandfather was in his late sixties when he began to decline from Alzheimer’s. Watching the memory fade was the hardest, and placing him in a home was a hard decision for the whole family.

  169. I hope you read this, but you also might want to ask them to test her B12 levels. Since getting B12 shots used to be trendy back in the day, they stopped really training doctors to look for deficiencies.

    A severe lack of B12 can cause many neurological symptoms which in turn can mimic dementia, Alzheimers, Parkinson’s, etc. I have a deficiency and was seeing a psychiatrist before I found out what was wrong. A friend of mine spent 1 week at the Mayo Clinic getting tested for a variety of things and found out she was deficient too.

    It got to the point where I couldn’t remember what I had read from a previous page in a book. While it may not be her main problem, if present – it could be making things. FWIW, my symptoms came on pretty quickly. Request the simple blood test just to be on the safe side~!

  170. You are doing a great job. I’ve never had a harder thing go do. We had step family and a step dad with altzimers when mom had a massive stroke. Nightmare. They took over. Mom got no therapy as her Dr.’s said she would die in days. I kept asking for therapy all along the answer was no from step family. 11 years later she is now in a nursing home in the town I live in. My sister keeps wanting her toys from mom’s house that is rented out. My sister is 58 years old and there were no toys there but she won’t listen and continues to ask. Mom’s assets are nearly used up and within a year there will be a need for Medicaid. I have kept her bills paid. Best to you. Rita
    [email protected]

  171. A real good book for you and your family to read is My 36 Hour day by Nancy Mace.

    It sounds like you’re in Canada, but down here usually a larger hospital will have a geriatric psych ward and you can have mom test 10 ways to Sunday to verify the diagnosis of Dementia or ALZ. The above book will give you an idea of what tests should be run and why.

    Sometimes knowledge is power. For me, if I know exactly what I am fighting and why and how to better understand, I can cope better with the situation rather than flying in the dark.

  172. Isn’t it about time for another entry? I appreciate your writing and your walk with your mother. We are going through the same thing with Nancy’s dad.

  173. Bother – I hear ya… going through the same / similar challenges with my Mom who is 72. It’s tough on all, and there are no perfect answers, and many time I just don’t feel like it.

    Yet I know; “feelin like it” has nothing to do with it. It’s just what we are required to do by any decent universal laws we follow.

    Keep the faith; take comfort that you have partners, and keep on truckin.

  174. I realize that you’ve been doing this dealing with this for sometime after seeing the date of 2011 on your blog. However it sounded so similar to my situation with my mother I wanted to share my experience. I lived four hours from my mom. Over visits on the phone I could tell she was confused, agitated, and delusional. After driving over to check on her I immediately packed her essentials and drove directly to the emergency room in the town in which I lived. She was in the hospital almost two weeks. Her diagnosis was mild dementia with personality disorder. The symptoms were similar to that you experienced with your mom. The doctor adjusted her medications and recommended she see a psychiarist, enter an assisted living residence, and insisted that she receive medication management and assistance with personal hygiene. Her drivers license was taken away from her and I was assigned management of her finances. We found an excellent psychiatrist who added medications that improved her mental stability. Her confusion, agitation, and delusions are almost completely resolved.

    We found an excellent assisted living residence and after two months began to to see marked improvement. It has been now been four months and she is better than I have seen her in the last 10 years. The best action taken was to completely change all of her doctors and the hospital that she had been using. A fresh look provided new options. We are so happy that the new options have been so successful. While our mother can’t do the things for herself that she used to, she is happier than I’ve seen her in a long, long time.

    I hope all has improved for you and your mom. I certainly feel blessed.

  175. i am 59, 60 next week and have alot of your moms issues, anyhow my mental issues after ten years in hell is do to celiacs dease. get her off gluten. i am doing better but still slide backwards if by accient get some. i know it seems like a fad diet thing, but i chased mental.health issues plus all the other side effects, and not one of the hundred of doctors i habe seen ever pulled all the pieces together. now i am getting better they are still looking for some other reason. worth a try i know this has cost me a life worth living. You are a great family and amazing sons be kind tp each other, and from a mom with health issue know that she loves you and thankful for all you do.

  176. Was researching elderly care when I ran across your blog. I have been taking care of my husbands mother since 2000. She is now 87, and lives with us. The first ten years, I was where you are now. For the last four, I have, at times, felt like I was in hell. For the most part, it’s not too bad. Granny has issues with constipation, pray your mother does not become obsessed with this. Thru caring for her, I discovered it’s way more than that, it goes back to her childhood, when it was considered abnormal not to have a bm daily. Granny is anorexic, only she doesn’t see it that way. She can’t do much, but give her enema equipment and it’s on! I am fortunate enough that I have visiting nurses and physical therapists, but that’s it. Granny has full blown Alzheimer’s, which was dementia many moons ago. She gradually slipped as the years went by. Repeating herself, everything is a question, paranoia, fighting me, sometimes physically, she weighs 88 lbs. but talk about strength, and this goes on daily. I have taken over everything: bathroom activity, medications, and keeping her occupied so she doesn’t slip away altogether. On the other hand, she is cute as a button, can be hilarious, and I don’t regret one bit of it because she is a joy in my life. I am reluctant to put her in full time care because no matter how good they claim to be, I have yet to find one that will meet her needs without tying her down to a bed or chair because they just don’t have the time to give her what she needs which is constant care. I feel for you and your family and wish you all the best of luck and life. This is a hard road but I don’t regret the journey. I’ll get my life back, just in time to take care of my aging parents lol.

  177. From the amount of responses, this is undeniably an extremely engaging topic. Everytime I come back to this post there’s an interesting visitor post better than many of the prior ones.

  178. Some disturbing things stand out to me in reading this article. The writer mentions how the study of spanish lessons and other aspects of their own time were sacrificed to the task of helping the elderly mother. Odd to mention their specific personal losses of time. The next was the use of the word “purge” when referring to sorting through the elderly lady’s possessions and determing where the possessions might have to go. Just weird, in my opinion. This is as far as I got when I realized it’s rather odd to see your own parent that way.