Dad up and died and left me to deal with my mom's Alzheimer's. I need so much advice

In My Humble Opinion (IMHO)
#1

Good god, where do we even start. My dad has had faltering health all year. We’ve been in and out of the ER numerous times since January, fighting the symptoms of what ultimately ended up being untreatable heart failure. He stopped feeling well in early August and went into the ER/hospital for 10 days before dying. He died of an unknown cancer. Very disturbing.

My mom was staying with him at the hospital but by the third night she was deeply off the rails and the night-nurse told me she can’t stay any longer, has to be attended at all times. Her memory has been slipping for a long while but I was not allowed to intervene because my dad was 100% with-it mentally and could keep her on track. They were even driving places alone right up til the end.

Her mom died of Alzheimer’s. Her siblings are estranged DUE TO the family schizsm that occurred over disagreements in how to manage their ALZ mom. Their half wanted her in a memory care unit. My mom’s faction wanted to keep her at home with her. Turns out, my mom’s only surviving sister came to my dad’s funeral the other day. When I told my aunt that my mom’s ALZ is so bad she can’t keep it straight MY dad died, not HER dad…well…my Aunt was like “yeah everyone has it. The whole family. Everyone but me and one sister” (there were 7 siblings). I would have otherwise never known this!

So my mom is in the middle of this Alzheimer’s diagnosis. Her neurologist thinks she’s in a late stage. She can’t remember she can’t remember, so she’s hostile and thinks no one tells her anything.

So what happened was the 3rd night at the hospital, my dad was unable to speak or communicate well, and was grouchy and confused and would bark at her. And it hurt her feelings but worse CONFUSED her because he was barking indecipherable orders at her while she was in an environment she didn’t comprehend, and she went into a delirium. The night-nurse called me to bring her Aricept, which we had left at home. I was at the hospital waiting in the hall to talk to him when my mom came running out of the room into the hall crying and yelling my name.

I WAS NOT SUPPOSED TO BE THERE, and she had NO IDEA I WOULD be there. She was in her delirium, and was hallucinating about some “evil man” who kept coming into the kitchen–that she was in her kitchen at home and ran out of the house into the alley because of the evil man and kept demanding someone else back her up about that evil man.

She was saying she needed the chaplain to come pray, that the devil had taken over her brain and was controlling her voice. I got her in the room and in a chair and dimmed the lights and calmed her down and what had happened was my dad barked he needed the “urinal” because he was having some weird sensations related to his catheter. He was sounding like 'I NEED MY JOURNAL" due to his marble mouth (super cogent sidebar: they said he died of a “plasma cell neoplasm” which I guess is a blood cancer? Enlarged tongue is a symptom).

So I get her calm and explained she hasn’t been home in days, that it was the third night in the hospital and she was there with dad who was too sick to talk. She was dumbfounded. Earlier in the day, she was having visual “auras” and tracking things in the air and asking if I could see them. It was troubling but I chalked it up to the stress of the situation.

Long story short, they would not allow her to stay there anymore because she was too much of a liability. I had to run her through the ER to make sure it wasn’t a stroke (both her PCP and neurologist said we should…it took 12 hours…) and she was diagnosed with sundowning and delirium. It’s not the first (or last) delirium episode.

She has since then been living with me. Dad died and we finally had the ceremony a few days ago. Now that I have the mental bandwidth, I am going to have to figure out what to do with my mom.

SHE IS A MAJOR PROBLEM THAT REQUIRES A DELICATE SOLUTION.

I am both her Durable and Healthcare PoA. This is by assignment by documents a few nights before my dad died–both he and her signed–but also by probate as dictated in his will. She is my responsibility.

So she has been living with me and my fiancée since the night she freaked out, through the death, and now the funeral. This is untenable. The problems are:

  1. She’s intractable. She cannot keep any information straight. She cannot keep it straight her husband has died. She thinks it’s her dad. She keeps marveling at how she “inherited it all. None of my sisters (all but one are dead) got ANYTHING!” I have to remind her daily anew it’s my dad, not hers, and where we are and what we have to do.

I KNOW that you’re not supposed to do that, more on that topic soon.

  1. She is desperate to stay at their house alone. Totally cannot happen. She cannot be alone for even an hour, and I myself cannot possibly keep up with her, not even if I made being her caretaker my full time job. She goes off the rails every night, she has to be doped up to sleep because she will leave the house after a nightmare. She cannot be alone. She spirals inward into her brain when she can’t find an answer to her questions and there’s NOTHING in there but plaque between her neurons and she can’t find any answers and she just spirals into a hysteria.

I would LOVE for there to be a solution where she gets to stay there–maybe a dayshift nightshift thing, but she literally can’t remember who anyone is so she’d be aghast at different strangers in her home. Especially w the sundowning.

  1. Her doctor is fucking dogshit. He failed to find a terminal-stage cancer in my dad who is out $136k just this year in medical bills BEFORE the 10 day hospital death which the bill hasn’t come yet…fuck that guy. He’s my mom’s PCP and has handwaved me away to her neurologist.

Her next step is a full cognative assement which is not to happen until October. Know what else happens in Oct? I am supposed to get married.

Already cancelled the honeymoon because **gestures broadly…

I HAVE to figure out a mental health facility to take her into good care. She needs help. I don’t know where to start. I don’t know what their insurance is or covers. I don’t know how much money they have coming in per month. I don’t have any idea how to start moving forward, I know it’s one bite of the giant elephant at a time, but I have to start TOMORROW. In 12 hours.

I need ADVICE.

Also—

Why are we supposed to gaslight ALZ people?? Why are we supposed to lie to them and tell them nothing’s wrong, that OH NO you did not forget, I forgot! Why?

My mom has low self-esteem. And she’s easily spooked. She’s a subservient Christian women who will back down if you say “LISTEN, WOMAN.” She requires THE SOFTEST touch.

Through all of this, she keeps grappling for ways to blame herself–it’s her fault he died, she missed something. She spent too much time upstairs working on crafts. She didn’t pay enough attention. That’s why her memory is bad–she didn’t spend enough time talking to other people.

I THINK THAT IS PARTIALLY TRUE. My mom is two things: she’s a mega extrovert and a mega craft fiend. I think a memory care unit would be ideal because she can have some of her furniture and junk from home, she could have a desk to work on crafts, plus she would have all-day socializing with other ALZ patients and no one would ever get tired of each other. And we could spend weekends and holidays at her home, and I could be the memory care casanova. That is ideal. Me and my little white dog would come tickle all their funnybones.

Do these things cost out of pocket every time?
Does Aetna or Medicare cover anything?
Do I hold off on having her assessed until I get some legal remedies in place (I worry about her medically declared state of incapacitation to cause some problems, but then again I am her HC and Durable PoA in two directions, so maybe not).

I have other questions but I’m firing this off.

#2

First, I’m so sorry for the loss of your father–and the loss of your mother, too, because she’s not the same person who raised you.

Second, you’re right that she needs to be in a memory care unit. It would actually be better for her to be there than to be in your home: she’ll get more stimulation, and the staff is better able to deal with ALZ and its many, many difficult aspects.

I should say my experience comes from my BIL, who died last year. My sister couldn’t care for him, and home care wasn’t an option. (Long story.) I had to learn from scratch and eventually made all the arrangements. Everything varies from state to state, so my experiences may not fully apply.

First of all, you don’t need to accept fault or anything. The point is not to argue with her because it does no good and will just further agitate her. When my aunt had dementia, she wanted to know where my (deceased) mother was, and my cousin kept telling her Mom was dead because she didn’t want to lie, so Auntie had to go through the shock and grief repeatedly. My cousin finally learned.

I’m glad you have a medical POA. That’s crucial.

Unless you’re extremely wealthy, you can’t afford memory care on your own. Here’s my #1 piece of advice: find an eldercare attorney pronto. My sister had one, and he was a lifesaver. Your mom will need to go on Medicaid. To do that, she may need to “spend down” her assets by paying for the memory care initially. DON’T try to figure this out on your own! Get to that eldercare attorney.

Like your mom, my BIL didn’t realize he had dementia. In some patients, the ALZ destroys the frontal lobe, so patients lack the executive functioning needed to recognize they have an issue. This makes it harder on you, easier on your mom (in some ways). Since my BIL was in that shape, we had to do the following. (Again, may be different in your state.):

  1. Take him to the ER and get him evaluated. (We told him we needed to get his med refills authorized.) They asked questions, ran tests, and signed papers to temporarily commit him to a psych hospital. (Docs in that state can’t commit people to nursing homes.)

  2. I requested transport to the specific psych hospital I’d found to be best. They admitted him. Then they submitted paperwork to the state to get him transferred to a nursing home. (I’d already made arrangements for this.) Not all nursing homes take Medicaid, and some that do are awful, so do some research. Check ratings.

You local Council on Aging may be helpful.

All this takes time, so you’ll want to get started ASAP. There’s a chance you won’t have to postpone your wedding, but since all this is so stressful, I’d strongly recommend postponing the wedding a month or two.

Sorry this is so long.

TL’DR: get an eldercare attorney. Contact your local council on aging.

I’m sure others will have further advice. PM me if I can help further.

#3

Oh, and about neurologists… My experience only: they’re good for early-stage dementia, but your mom is already on Aricept. My BIL’s neuro did squat, though in fairness, there was little she could do. I would NOT wait for the neuro appointment.

My BIL had no doctor. The clinic I spoke with said they’d just have sent us to the ER (See previous post.) anyway.

Hopefully others will chime in.

#4

@nelliebly’s advice is excellent. Get in touch with an elder care lawyer soon. Your local Council on Aging could probably point you towards such lawyers, as well as be lifesaving advisors on other counts. This site will locate the local area agency on aging:

https://eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx

Keep pursuing getting your dad’s estate through probate. Perhaps that same lawyer can assist you. Among other things, nothing in your dad’s will can assign POA’s for your mom. She has done that recently in those papers she signed. I would soft pedal her state of mind when those were signed so they aren’t questioned and make things a whole lot more complicated.

It will take time to get her settled into care (you are right, it can’t be done in her home unless you have $10,000+ cash a month to pay for 24 hour aides, which will take countless frustrating hours a week to recruit and schedule). I echo Nellie’s advice to postpone your wedding. If you can’t, start now to schedule round the clock care for her for the week surrounding the wedding. It’s possible that you can find a memory care unit for her that will take her for a week as respite care if arranged a head of time.

A psychiatrist could also do an evaluation of your mother and may be able to do it sooner than a neurologist. If you have the option for a geriatric psychiatrist, all the better. A geriatric psychiatric nurse practitioner is another worthwhile option.

ETA: no, Aetna nor Medicare do not pay for long term care. Medicaid might, after a waiting period and after all assets are spent down-that is an arduous process.

My condolences on losing your dad.

#5

nellibly and BBB already have given very good advice.

I’ll encourage you to get your mom into memory care as quickly as possible.

From experience, home care is very expensive and stressful and can be difficult to find a provider who specialises in memory care in the home. There are also legal liabilities if Mom wanders off somewhere outside the home.

When you get your mom into a memory care unit, the reality of that world will be shocking in some ways. The locked doors, needing to be buzzed in and out(at first, you might be given a key card at some point). The mirror at the exit or the sign telling you to make sure you’re not followed out the door. Being surrounded by people who, aren’t, anymore can take a toll when you visit your mom. (Praise for those who work in memory care, that’s a tough job)

#6

Besides the attorney, find yourself a geriatric care manager. I used one when my parents needed to go into a nursing home, and she was worth her weight in gold. She was very familiar with all the nursing homes in the area, and so knew which ones were good and which ones to avoid. She did all the paperwork/legwork of actually getting them admitted into the one we chose. Someone like this would also be able to advise you on how best to deal with the week of your wedding.

Some hospice facilities will take people like your mom on a short-term basis, so that may be a solution for you for the week of the wedding.

I will note that city/county aging agencies vary wildly in their quality. The one in my parents’ area was pretty useless. A care manager can probably advise you on whether the one where you live is any good, and what they are good for.

As noted, Medicare and regular health insurance do not cover nursing home or assisted living costs. If your parents had a long-term care insurance policy - which most people don’t have due to the high costs - they would pay a portion, depending on the terms of the policy. For Medicaid to cover the costs, your mom’s assets would need to be used first.

#7

Finding the right balance can be tricky. Just remember, you don’t need to actually agree with them when they say something that is wrong. You have the option of just not engaging on that point.

If it’s an issue that is really important - if them believing the wrong thing would actually be dangerous - then you need to try to correct it, knowing up front how difficult that will be. But if it’s something that really doesn’t matter, like thinking their nephew is actually their brother-in-law (which actually happened with my mother recently), just let it go, it’s not a crucial point, and getting into an argument about it will just upset everyone. And in a day, or an hour, or even a minute, your mom won’t remember it anyways.

So, you don’t have to agree with her, just don’t go out of your way to counter it, either. Just take a deep breath and try to move on.

#8

Your mom needs to go into a memory care facility. The doctors should be able to get her calmed down.

She may not remember the traumatic events at the hospital. Which may be a benefit for her.

I would urge the OP to find a specialized facility. Some nursing homes offer memory care but it doesn’t offer much support for the patient.

#9

Just popped back in to add a few things I thought of this morning.

It can drive you bonkers when the ALZ patient repeats the same question or continually sounds a delusional alarm. The usual advice is to redirect, which often works. My BIL couldn’t BE redirected. And when his anxiety–a common symptom–led to nightly near-hysterical insistence that killers were invading their house, it was anti-anxiety meds that finally calmed him and saved my sister’s sanity.

Boo gave some excellent and wise advice. I was hoping she’d show up! But depending on your state, you may not need to wait for Medicaid eligibility. That is, you have to apply, but once your mom is approved, the long term care bills should get reimbursed dating back to when she became eligible. That’s what happened in our case. The nursing home never even sent my sister a bill. So don’t assume you’ll be caring for Mom for ages because of a waiting period. (Actually, for us it was a processing period, not a waiting period.) I should add that the eldercare attorney had already split their assets, etc. In your mom’s case, she may have to spend down her assets first.

There IS a 5-year look-back period for assets your parents may have transferred to you*, but there are ways of dealing with that the eldercare attorney will know. Don’t worry that you’ll be dealing with Mom for 5 years. You won’t.

Do you have any siblings or other family members? This is an easier burden to bear if you have others with skin in the game, so to speak.

  • California does it differently. Some assets only have a 30-month look-back period
#10

I’m also in CA. We just went through this with my Mother-in-law. The elder care specialist is very important. We found one just shortly before my MiL died and even in a short time she made a huge difference. She knew which facilities were good in the area, but more importantly for us, she knew good doctors. MiL’s previous doctor had a financial arrangement with her retirement home, and we did not get an accurate medical picture.

My MiL had a phone, but became confused about how to use it. She started posting notes on Facebook that she was being held against her will and someone needed to save her. She was convinced that workers at her home were evil and doing things to spite her. I got calls in the middle of the night from friends and relatives who saw her messages. I’m not sure what the lesson is there, but a proper facility is important.

I’m sorry this is happening. We’ll be here if you have questions or just need to vent.

#11

Ok…so I really am in over my head, looks like…

I guess let me give more info and see what I can figure out.

Sorry if I’m being redundant. This thread has me a bit shook.

So part of the problem was my dad shielded us from how bad the dementia was. I found in his phone a note keeper app where he has been keeping notes on my mom–shoe size, hair coloring brand/number, etc—but there’s also a note in there that her doctor noticed her memory issues back in 2018.

I knew of them before that, and I was concerned since her mother also died of ALZ. My dad shooed me away and would say “it’s just her short term, it’s part of getting old,” and I realized he was being really protective of their autonomy. So I let him make his decisions.

They both desperately wanted to age at home. My dad’s unknown cancer and rapid decline means we really never discussed what to do with mom if he were to pass, other than signing me up as HC and Durable POA.

This part is…goofy? Funny? I dunno, it’s something–He was in and out of the ER and not really showing much improvement, so I did some asking around here on the Dope and came to the conclusion I needed HC/D PoA. We met to sign those documents. My dad was 100% on board, and I had two witnesses confirm my mother was of a perfectly sound mind and reasonably understood the decision she was making. She still confirms that decision. The part that’s “goofy” or whatever is that after he passed, I saw that in his and her wills (which I had not before seen) they named me both HC/D PoA.

All that said, I have NO IDEA what the probate process is.

We’ve gone to the banks and transferred everything into my mom’s name with me as acting agent. She obviously has no idea about their expenses, income, has no bank card, etc.

I went to the courthouse and they pulled the will/deed, and it looks like they were joint tenants in common so the clerk just had us sign an affidavit and stamped it and said to put it in a lock box because the deed’s now in her name.

I didn’t know if I needed to do anything else. I don’t know if having the house in my name would be a better thing moving forward.

Finding an Eldercare Lawyer/Care manager/seeking advice: I’m coming up pretty empty. My state’s official page on eldercare is a 404 error.

Financials: My dad has a retirement fund that is attached to the stock market. He has an financial manager who I have been in touch with, but I do not know how much money they have coming in or going out per month. It looks pretty shoe-string–maybe $2k/month or less.

How else would I figure out their finances? Just have to pull up bank statements and see what’s coming in and what’s going out?

There’s not a ton of $$ in the bank (maybe 11K liquid), no other assets that I know of (2015 Dodge, my mom collects antique dolls, the house. That’s about it).

I was strongly hoping Aetna/Medicare would help offset some of this…disappointed that’s not going to be possible.

I’m reaching out to my cousin to see if they will confer with me since they were more involved w her side of the family and all of the aunts and uncles with ALZ. We have a call scheduled for tonight.

As it stands, my mom’s next step medically would be this cognitive assessment which is in early Oct. Should I accelerate that, because as of now she’s not certified/banned/barred or, I guess, technically fully diagnosed. She still has her DL. I don’t know if there’s anything I need to do BEFORE an official diagnosis, or if it’s better to have her assessed sooner rather than later.

I ask this because right before my dad passed, he was medically cleared for transfer to a skilled living center, and my mom was also approved to go there for memory care. But the intake manager was really iffy about not knowing her assessed level of dementia and was unsure if they could facilitate her since it wasn’t a locked unit.

#12

A bit off topic but do people suffering from Alzheimer’s ever have pleasant delusions/hallucinations?
Is there something about the parts of the brain that are impacted that make “bad” beliefs more likely? My mother had it and was in a memory care unit until her death but while having almost no memory, was pleasant and undemanding right until the end.

#13

I’m so sorry for your losses. With the advice above, I would add, get her end of life paperwork done, if it isn’t already done. In my state it’s called a POLST, you need to decide if she is DNR, full code or somewhere in between.

#14

Yes, delusions can be happy. I’m not sure if there’s any research as to why people experience one versus the other. I’ll try to check into it.

#15

It would, but at this point I think you need the attorney. The fewer assets she has the better, as strange as that sounds. Medicaid won’t kick in until her assets are gone.

Social Security is another income stream that you should look for. If you have her social security number you can set up online access and find out what’s going on. Social Security will also need to be advised that your father has died.

Regarding the assessment, I would hold off on moving it forward until you talk to the attorney. I would DEFINITELY take her DL.

One other thought - find all of her paperwork that you can. I mean her birth certificate, wedding certificate, social security card, any and all credit cards. I forgot to mention that my MiL was unfortunately taken advantage of by another family member. They maxed out all of her credit cards and used her SSN to take out several new ones. I would lock your mom’s credit if you can. I think you can notify the credit bureaus to do that.

#16

I see that your mother was “approved” to go to memory care. Was she cleared for admittance to a facility? If so, make sure she gets there ASAP.

#17

You should definitely talk to an attorney; but there’s generally a stretch of time during which transferring assets won’t protect them from Medicaid – that is, if the transfer takes place too close to the time when the application’s made, they’ll treat it as if it were still your mother’s.

Won’t help; she probably can’t remember that she needs it. Take the car keys. Make sure you’ve got both sets.

If you’re clearing anything out of her house to toss it, even if at first glance it’s obvious trash – check thoroughly. Things you want (anything from the car keys to cash to important family papers) may be mixed in to a stack of old sales flyers. That sort of thing may have been happening for longer than you think.

If she accuses you of things, and she might – remember, that’s not her; it’s the disease doing that.

And you’re entirely right that you can’t handle this at home on your own. Nobody can. It takes an entire team.

#18

Great advice. @thorny_locust hit it out of the park!

Which reminds me, don’t waste a minute cleaning out all of your dad’s medications from the house and make sure she only has access to the current day’s worth of her own medications. She should be taking then in front of someone and not able to stash or stockpile them. You essentially have to uber-childproof the house.

#19

Consider using an estate planning attorney. Technically you can do probate yourself, but that’s a lot of time and hassle you probably don’t want to deal with right now. Different states handle things differently, so you need to know the specifics of how your state handles probate. An attorney will have all the answers. Obviously you pay for those answers, but that will be money well spent so you don’t have to fret about it. If you are the only heir, it should be relatively simple to get probate handled.

#20

My experience is actually probably not with Alzheimer’s; they thought my mother had vascular dementia, though some of her sibs did have an Alzheimer’s diagnosis. But there’s AIUI a lot of similarity with the problems.

FWIW: it does seem to me that there’s a lot of help out there which didn’t exist twenty years ago. But I don’t know how accessible it is in all areas. Even at the time, I had an aunt saying ‘why don’t you just take advantage of x’ to whom I kept having to explain ‘maybe you can get x where you are, but it’s not available out here.’