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 — 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 — 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.

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 — 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:

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.
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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*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.
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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
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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.
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They may no longer be eligible.
It’s a harsh system.
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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.
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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.
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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.
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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…
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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!
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Take care of things with your family. We’ll find a way to get by if you miss a post or two.
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Agreed. You need to take care of your family first, JD. Good luck in the coming weeks.
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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!
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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.
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I hope your mother finds peace.
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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…
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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
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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.
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Ditto, JD. We’ll be here. Good luck with your mother.
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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.
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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!
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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.
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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.
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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?
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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.
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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.
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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.
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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!
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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.
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Fair enough JD – sounds like you put a lot of thought into your Mother’s privacy.
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/hug J.D.
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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.
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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.
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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.
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I can confirm that. The message was not displayed any longer.
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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.
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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.
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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.
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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.
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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!
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So sorry you’re dealing with this, J.D.
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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.
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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.
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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.
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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.
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There is a ton of great advice in this comment. Thanks!
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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.
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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.
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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:
“I’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.
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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
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That’s really tough to hear. I wish you guys and your mom the best.
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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.
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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.
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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.
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This is so true. My mother went from twenty to six. Her bloating disappeared and her memory got better.
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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.
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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.
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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!
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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.
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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.
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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
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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!
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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.
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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!
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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.
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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.)
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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
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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.
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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?
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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.
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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.
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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.
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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.
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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?
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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!
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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.
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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.
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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.
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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.
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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.
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Brilliant advice. Thank you for taking the time to comment. I am going through a similar situation with my mother and have next to no help from my siblings. Ann
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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.
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