Dealing with Dad (dementia is a b*tch, advice welcome)

In My Humble Opinion
21

Migraine time, but the meds are taken, so it will be better soon.

Mom returned from seeing the lawyer. The excellent news is that Mom does have power of attorney, and it can be triggered if the doctor writes a letter stating Dad is incompetent. That triggers the living trust and puts Mom in charge of everything.

Dad is covered by Tricare and Medicare both, and there’s very little for us to pay when it comes to acute care. The same is not true, so far as we know, for nursing homes.

I need to do more research on the VA, clearly. Mom’s under the impression that there’s still a significant financial burden if you’re anything other than destitute. With the trust already written, I don’t know if she can divide assets. Besides, Medicare goes back three years examining assets to make sure they haven’t been shunted away or separated.

Mom’s been very resistant about a nursing home because they’re so expensive, and anything less than that - day care programs, assisted living, in home help - would require cooperation from Dad.

All of a sudden, Dad calmed down this afternoon. He told me and bro that he’d made a decision, but wouldn’t announce it until Mom was here (we’re pretty sure it’s that he’s going to divorce Mom. Oy). We went to meet Mom to discuss what the lawyer had to say, and Dad was asleep when we got back. So . . . who knows? Our current strategy is to accept whatever he says (“I’m divorcing your mother.” “Oh, okay, Dad.”) without arguing, explaining, or questioning, and then moving on. If he, for instance, decides to call the police because I’m still here in the morning, he gets to call the police. When they come, we’ll get to explain his diagnosis and that he’s been very unhappy since his car keys were taken away.

I’m . . . relieved and validated and just so affirmed by everyone’s comments here. I could write a book about how much I hate Alzheimer’s, how it’s stolen my father from me. I’m surprised to read so many people recommending nursing home or assisted living for him, but it helps to have an objective, experienced viewpoint. (In Texas, there’s a saying: If one person calls you a damned dirty dog, walk away. If two people call you a damned dirty dog, reconsider your character. If three people call you a damned dirty dog, buy a collar and take a bath.)

One of the things my mom has mentioned was a lecture she attended in nursing school. It was on neurology, and one of the students asked the lecturer why was it that dementia almost always turned people mean as hell as they lost their faculties - more than could be explained by frustration or loss. The neurologist explained that Alzheimer’s and other dementias destroyed the mind from the top down, peeling back layers of evolution. The neocortex with its culture, learning, and sociability went first, then the prefrontal cortex with its executive abilities of focus, social filters, ability to predict consequence, and ethics. Then temporal lobes with emotional awareness, language, and so on . . . Keep peeling those layers until you get to the reptile brain and find a crocodile staring back at you.

Alzheimer’s brings out the crocodile and kills off the rest. So, more and more, Mom and I use that to refer to Dad, his state of mind, and his behavior, like a code. Croc’s out today, Mom. The crocodile is strong in him, young padawan. I’ve even started whistling the crocodile theme from Disney’s Peter Pan.

I’ve bookmarked many of the pages on the Alzheimer’s Association (thanks for the pointer), and Mom and I are making plans for the next support group meeting we can go to. Research begins, options are open, and I’m going to push to talk to the VA.

22

Keep reminding yourself and everyone else in the family not to take if personally when Dad is being mean/filing for divorce/disowning you/etc. Keep trying to remember who he was, not how he is now.
Stay strong. Wishing you all the best.

23

One thing I’ve learned about the VA and Tricare is that you can never make assumptions about how much of a copay you’ll have. In fact, the VA will accept whatever Tricare pays to offset what you’ll owe, even for long-term care, which will significantly reduce the financial burden on your mother. (More information is here.) I’ve also never encountered a VA worker who hasn’t bent over backwards to do what they can.

24

Man, that’s a great site, Ms.Robyn, but I’m so tired I can’t make heads or tails of it, or figure out which group my father would fall into. I will, however, call tomorrow and see what I can find out.

25

My widowed father in law, same age same dementia stage only far more easy going than your ( the OP’s) dad has been in an assisted living facility here in British Columbia for about three years. The staff have been able to half assed (more than required) watch over him to ensure he takes his pills and does not over eat affecting his hernia causing him to freak out. Any day now we expect to hear that they can no longer look after him. Then our government will find him accomadation with a higher level of care with subsidization based on a percentage of his pension income just as he is being supported today.

What would happen if your mother divorced him ? Are the division of assets more costly or unbearable than the conservatorship fee? Someone else like the government will have to look after him if there is a divorce I would think.

26

The numbers on applying for conservatorship start at $5-20K and go up from their. My mom would have to foot the bill for her own lawyer and whatever lawyer the court appointed my Dad. If she divorced him, she’d probably end up paying him support, which does not solve the problem.

Currently, the reason we’ve been able to take care of him for so long is that my mom’s an RN, and I’m a well read, knowledgeable person who follows her every instruction. However, Dad’s increasingly unstable emotions (from declaring the my brother and I were no longer welcome in his home this morning to watching Shakespeare in Love with my mom and laughing and joking) are making care more and more difficult.

One of the problems we face is that everyone - except for Dad - wants to move back to Texas. However, nearly all the medical programs he’s covered by are managed either on the state or regional level. We have to determine if her Power of Attorney and the living trust will transfer to Texas automatically, or if it’ll be a huge production. If, heaven forbid, Mom has to get conservatorship, she’s almost guaranteed to have to reapply for it in Texas, another multi-thousand dollar chunk of money.

So, there’s a lot of research and work to be done at this point. All I want is for my dad to be safe, comfortable, and happy as possible. Why the hell does that have to be so hard.

27

I would also suggest checking in with your county health department for several different reasons. They may have contact with local support groups of other people dealing with like situations - networking can be a comfort and a power due the the information shared. In other words, how others dealt with the various legal issues. And speaking of which – talk to them about what realistically is needed to get a form of POA over your dad or to at least get his condition on the record.

Also consider touching base with a church if you or he are affiliated - heck, give a couple a shout even if you aren’t. From my experience both the Catholic and Lutheran Churches both have strong programs and various kinds of aide for problems of an aging population. And great support for the caregivers.

We got lucky with Muvver; when her dementia manifested it was after a heart attack and following complications when she was in the hospital. In other words, she was declared unfit for discharge medically and mentally at the same time. Her worst anger was only about a month and shortly after that she was in the nursing home that became home to her. We missed the territorial fight in the home. But the tips we got from our church really helped us get her in far and away the best situation possible with the best quality of life.

28

I want to point out that there is a difference between Medicare and Medicaid. All U.S. citizens over 65 or with qualified disabilities are eligible for Medicare. Medicaid is a needs-based program that one must qualify for, and it does require the spending down of assets. Medicaid is managed by states, and the rules differ. In my parents’ state (and I assume in others), a spouse is allowed to keep some assets, although Medicaid may claim those assets after the spouse dies. This would include, for example, a house.

Wikipedia has some good information.

http://en.wikipedia.org/wiki/Medicaid

According to the article, Medicaid payments currently assist nearly 60 percent of all nursing home residents in the U.S.

29

One of the first rules of problem solving is know the parameters of the problem you’re dealing with. Any assumptions need to be challenged and replaced with facts - I’ve often found that getting the facts usually takes care of at least part of the problem, because some of my assumptions weren’t based on reality.

30

The Grandma From Hell is 98; deaf, tinnitus, slight arthritis in the right knee, crabby hands, 6 teeth left, short-term memory quite shot, her gallbladder has been MIA since the 1980s so she can’t have too much fat or chocolate in one sitting. In theory she needs a walking stick because she’s got equilibrium problems, but in reality she forgets about it half the time and waves it around like Charlot the other half. I have no idea whether this will work with your Dad or not since his personal circumstances are different, but we’ve discovered how to turn the memory loss to our favor. It derives from my aunt’s psychiatrist telling her “you can’t directly change how they affect you, but you can change how you respond, and that will change the effect indirectly”; she started doing it as a way to tolerate visits to her parents better, but eventually and after the death of the Gramps from Hell, it turned out to be the best way to manage Grandma.

We’re always pleasant. We make “no” sound like “isn’t it a beautiful day? Look, not a cloud in the sky!” When what she wants is acceptable, we enthusiastically agree… the ten or twelve times it takes for the acceptance to get hold; she’ll keep asking “will you come next Sunday?” “yes I will, same hour as today”. When it is not, we still say no enthusiastically and putting a positive spin “will you stay until July?” “no Mom, I’ve got to help care for your greatgrandchildren, but I’ll make sure to bring you pictures next time too.” She doesn’t stop wanting my mother and aunt to move in, which she’s always wanted, but she eventually gets a different thought out of nowhere and we can focus her on that new thought more easily since the general mood is pleasant. Pleasant all the way. More pleasant than that house has seen in the 80 years it’s been in my family…

Mind you, in our case the change of personality has been to the pleasant side; the Gramps from Hell was one of those guys who always have people who know their dark side thinking “oh sweet Jesus what is he going to do next”, so while she misses him sometimes she’s a lot more relaxed now that he’s dead. We already were used to a lot of manipulation going on in that house, and Grandma’s deafness means that we can collude in secret by simply going to the next room and speaking in low voices.

31

It just is hard. My grandmother, who never hurt financially, moved into a place which had every level of care from Independent Living to skilled nursing. And at various times in her life, she needed every stage of care.

And there’s plenty of evidence that at least one transition should have occurred sooner than it did occur.

And she took several foreign trips where the desire to keep her safe and the desire to keep her happy were in conflict.

Dementia sucks. And even without dementia, aging is not for sissies, or the families of sissies.

Being able to hire someone to do the cajoling about meds is nice, but it’s so just the tip of the iceberg.

And if anyone could have persuaded her that a cane or a walking stick was USEFUL and not just for old people, she’d have had years of ability to hobble around with a walker, that she lost to stubbornness.

32

Hi pouka!

I am hoping to hear that all this great advice has proven somewhat helpful. I won’t say I hope to hear things are better, because I can’t imagine how they could be (on short notice at least), but it seems like there is a fair amount of consensus that there might be options.

As there is no snark involved in my saying so, no shit!

I’ve always said of things difficult: There are six billion people on this Earth. Some of them have gone through what you are going through. Of those, many have figured out how to navigate the rough waters successfully. Your job is to learn what they have done, and do it too. You are not alone.

In all my years viewing the world I have come to realize that although in may ways each of us is an island, if we take the time to pull out our telescopes, and wait for the fog to lift, we will see the other islands, and see we are not alone in the ocean. I’ve witnessed many a story, so many are more similar than you can imagine.

And then I look here at this thread and see what you are up to. You got it. I’m proud of you. You are doing the right things. You will be fine.

33

Thank you, everyone. The support really helps. Knowing I’m not alone really helps. Knowing there’s more resources out there really helps. I have more tools, thanks to you.

The crocodile is back today, not as focused as yesterday. He’s angry at the whole world. He’s yelling and slamming doors. He came up to my room and started going through the dresser, because he didn’t remember it. There was supposed to be another dresser there, and besides, he’d had a dream that his stuff was in there, and what if we’d put his stuff in there by mistake? It wasn’t so much that I was very un-thrilled to have him pawing through my clothes, but there’s a purple velvet bag with a black silicone . . . um, can you call it a device if it has no moving parts? At any rate, even a man with Alzheimer’s would be able to tell what it was, and that was just not a place I wanted to go, be at, or consider.

Mom has fixated on it being impossible to move to Texas without spending every cent on redo-ing the legal paperwork, transferring the trust, the power of attorney, and all that. Bro is a lawyer and has promised to research, but she hasn’t waited for his answer. I’ve never seen her so pessimistic. She’s also very against assisted living/nursing home because then we’ve “given up” on him, and he’ll never have another good day ever again. I’m wondering if the rare good days are worth what we’re going through. Right now, it doesn’t seem like it is.

I have started the application for Dad to get VA benefits. Trouble is, he lost his wallet three days ago, and it had everything in it.

I think I’m going to get to the point where I have to let go both of my dad’s needs and my mom’s needs regarding him. I can remain open and willing to respond if the subject comes up, but otherwise, once I get the basic information in, I need to set it aside and not worry about it. I’m not the decision maker. Mom is.

34

I’m so sorry for this pain and frustration your family’s going through, having to grieve someone whose body’s still there but who’s becoming a stranger to you all.

35

Well there is certainly truth in the fact that though you are a player in this drama you are not the lead. You can position yourself to be helpful, anything beyond that you end up being a target, from multiple angles.

36

Sucks about the wallet, though.

37

O, dear.
This is not good. Is there anyone, perhaps your pastor or a friend or a social worker who can talk to your Mom about this? A nursing home is not giving up, but a stranger on the internet is not the person who is going to talk her off this ledge.

38

Phouka, is your mom in “survival mode,” where she’s barely holding everything together and any change is a threat because it might bring the whole house of cards down?

39

My grandparents have been insisting on staying in their home come hell or high water, mostly on the grounds that “we can’t afford assisted living.” Well, when family members finally sat them down and did the math, it turned out that the really nice assisted living place (with memory care) will only cost a third of what they’re currently paying for in-home care. Admittedly their current in-home care involves at least one person around the clock and sometimes two, so most people probably won’t see such a drastic difference, but it taught us a thing or two about assumptions. Look into the numbers.

And good luck. I’ll be thinking of you.

40

Phouka, Since opening this thread, you’ve done an impressive job of assimilating information, evaluating options, and taking positive action. Your mom is going through a very frightening time, and she simply may not be able to deal with the situation.

My dad doesn’t have Alzheimer’s, but he had a breakdown and went through a year of bizarre physical and mental symptoms. The police had to be called on several occasions. Both parents were very resistant to any changes. The big changes that ultimately made things better came about through crises. Dad had to be hauled off to the hospital, and from there he was put in the nursing home. He thought it was temporary (and it could have been), but once there, he settled down and has done much better.

When things got so bad that hospitals and police were involved, Mom basically fell apart and went along with the decisions made by cooler heads.

The point of all this is that things may get worse before they get better, but that may be what it takes. The information you’re gathering now will serve you well if the situation reaches a crisis.