New to the forum, and sooo many questions

elisa0314

I've been reading through many of the forums and getting familiar with topics. My dad was diagnosed with Alzheimer's several years ago; we moved him and my mom to Colorado because two of us four children live here, and we could tag-team their care. They moved into an AL facility near us; mom died of Norovirus within a year (years of unhealthy drinking/alcoholism for both her and my dad made her unable to fight off the virus.) Since then, we've had to move dad three times in the last year and a half -- once to the Memory Care wing after he started wandering off; then to a larger facility close to us, where they thought he would be "fine" in AL. He wandered off and got picked up by the police within the first day. Then we moved him into the new Memory Care unit in that facility. It's really nice, actually -- feels cozy, secure and not like an institution.

He wants to leave, of course. He doesn't understand why he can't get his own place or move in with one of us kids. The reason is that years of alcoholism and narcissism has made him a really difficult person to live with. My older brother has a large house 5 minutes away, but won't even talk to him or visit him at this point. My husband and I have a small 2-bedroom house, and we've only been married a couple of years. Frankly, I'm not sure our marriage could survive having dad here. I'm torn up by guilt; I'm the only child of us four that spends any time with him -- I go a couple of times a week, take him out to breakfast or for walks and drives, get him whatever he needs using my own money, because he didn't save for retirement and doesn't have much funds to spread over the coming years. My entire family just fell apart after mom died, so no one's talking to each other and his emotional care (in particular) has just fallen to me. I'm overwhelmed, angry, doing what I can and feeling like it's never enough.

I'm sorry for the dump. I have a hard time focusing these days. I guess I'm just looking for support. He's getting into the very angry and paranoid phase of this horrible disease, and I'm feeling at a loss at how to help him and protect myself.

Thanks for reading through all of this, and much love to all who are on this journey. --Ingrid

M1

Welcome to the forum. Do not feel guilty, you've done more than enough. Your own life and marriage is critical here. When dealing with an addict in the family, boundaries are extremely important.

At some point I would also caution against taking him out of the MC for outings. Perhaps you can discuss this with staff. If it disrupts his routine or he acts out after you leave, then it may do more harm than good.

harshedbuzz

@elisa0314

A lot of this is very familiar to me. My PWD was dad. He and I never enjoyed an easy relationship. He had undiagnosed/treated mental health issues and became an alcoholic after my younger sister (his favorite) died. His diagnosis was mixed dementia— alcohol-related Wernicke-Korsakoff's and Alzheimer's.

The middle stages of dementia with dad were the most difficult. He developed anosognosia and was unaware of how impaired he really was and had no social filter regarding the inconvenience he would present if he moved in with me. Things actually got easier as he progressed further, but it sounds like you're still in the thick of things. I'm sorry.

There's an old saw around these parts that comes from the airline safety presentation— you need to put on your own oxygen mask before assisting others. Your primary obligation is to take care of yourself— career, your marriage, plan for your future and maintain your social connections. After that is sorted out, you can attend to dad knowing you have already taken care of his needs by placing him appropriately.

Once dad went into MC I stopped by a few times a week and brought him a treat— a fast food lunch, fancy coffee, soft pretzels, milk shake, etc. I only ever stayed an hour or so. I excused myself to use the rest room and ghosted. In your shoes, I would stop the outings and maybe take a break until he's settled in better.

If his MCF has a visiting physician, I would ask about medication to dial back his paranoia and agitation. Dad's geripsych had him on a cocktail of Prozac, low dose Seroquel and Wellbutrin. The Wellbutrin had the added benefit of lessening his craving for alcohol.

HB

Quilting brings calm

Welcome to the forum. You fit right in, so don’t feel awkward about anything you want to discuss. My mom and step-dad have been in an AL for five years next month. Step-dad died earlier this year. He was an active alcoholic for the first 30 years of their marriage and a recovering one after that. Between them they have six offspring. I’m the only one that dealt with them/ deals with her. I have her medical and legal POA, and handle finances, groceries, medical visits etc.

Please do not disrupt your own life and your new marriage any more than you have to. You can’t let your own health and life be destroyed. You can’t sacrifice saving for your own retirement either- otherwise you just push the burden along to your own kids.

I would reduce your visits to once a week unless something happens to require an unexpected visit. I wouldn’t take him out of the MC except for medical visits. I would also leave a visit when it becomes too hard or he’s being too much to handle. You can’t make him happy because his happiness capability is broken. All you can do is keep him safe.

mabelgirl

Your life matters and you should not feel guilty for doing what is the best for the entire family. Your skin will grow thicker simply by clothing it’s self in the “darn disease song”. Do not let your guilt do things for your dad that you really don’t want to do. I think this leads to resentment. Do what you feel is needed. Do continue to visit on an irregular schedule that is caregiver too.

Sorry about your family dynamics with the passing of your mom. I experienced that when my grandfather passed , aunts and uncles fighting , forbidding each other from their own funerals ! Still over 30 years and the family never recovered. That has changed the newer generations understanding of family. I pray your family can find a way to heal.
Prayers for peace and comfort.

elisa0314

https://alzconnected.org/discussion/comment/225376#Comment_225376

I'm so sorry you had similar dynamics with your dad. It's a really tough road to handle. I got sober 20 years ago, so seeing the additional wreckage caused by the alcohol abuse and associated behaviors has been interesting, to say the least. It actually helps keep me sober, because I never want my relatives to have the burden of that with me.

Thank you for this information — especially around the anosognosia and the treatments for paranoia, which are the current causes of the most difficulties with dad. He thinks we're all lying and that he's absolutely fine, even creating imaginary doctors who have told him he's either "healed" or that he's never had Alzheimers. He thinks he's going to get his drivers license back, buy a car and his own place or head to Europe to stay with a sibling. Dad's paranoia includes accusing one of my brothers of trying to have an affair with my late mom, and there's no convincing him otherwise, so in that sense, it's good that my brothers stay away and don't talk to him. He also told me he had an affair when my mom was raising us, so there's just a bunch of tough information coming out that I don't want my siblings to hear. But I'm in a constant state of shock and almost disgust, and it's wearing me down.

Walks outside seem to calm him, so that's most of what I do when I visit. I'll sometimes take him to his favorite breakfast place, where he gets the same thing every time and people know him there. But I've also talked to the MCF director and visiting doc about starting him on something like seroquel, at least to help in the afternoons and evenings when he's most agitated.

Thanks for your insights. I wish I'd joined this forum a year or two ago ;-)

elisa0314

https://alzconnected.org/discussion/comment/225382#Comment_225382

Thank you! This whole experience has actually made me glad that I don't have kids, and that my husband has a thicker skin than I do. I've often thought that if I ever get diagnosed with Alzheimer's, I'm just going to walk into the mountains and disappear. It's so tough. I don't want my husband to have this burden.

I'm hoping at some point this transitions to a place where he's less aware of what's going on, that maybe it will allow him some peace and he won't torture himself (or others) with the paranoia, demands and judgments that swirl around him now. There's a woman in his MCF who walks around just smiling at everyone, laughing softly, being curious and sweet. She seems to radiate peace. I wish that for him.

harshedbuzz

@elisa0314

I wish you signed on sooner.

My dad had mixed dementia which is actually more common that stand-alone Alzheimer's. Dad had Alzheimer's and an ARD called Wernicke-Korsakoff's Syndrome (WKS). The latter presents somewhat differently. I'm not saying your dad absolutely has this, there may be a genetic predisposition to it, but it is something that can be missed if clinicians aren't looking/testing for it. Dad was diagnosed at a big gun teaching hospital in the midst of a psychotic episode.

WKS includes devastating impact to episodic memory fairly early on which can lead to something called confabulation/conflated memories. This is when a PWD recalls an event but is hazy on the who-what-where-when- details. This can be quite subtle if you weren't witness to the event as often the stories make sense on the surface. One such tale strikes me— the first was him telling my then tween son about the time I left my kids at a bar and left with some random dude to have sex or do drugs. I hadn't returned to the bar by closing time, so the bartender called him to pick up the kids. Some version of this did happen— twice, in fact— once with his alcoholic sister and once with my sister who had her own mental health challenges. In one instance, the bartender called the police who tracked down dad and in the other my older niece gave the bartender my parents' number. This really felt like dad was rewriting family history in a bid to perhaps burnish my sister's reputation by charging me with her antics. She was his favorite. Fortunately, my son is an only and confused by dad's referring to "kids" and "girls" in the telling.

He did this about a lot of things— major and completely inconsequential. Over time, he started inserting himself into TV. The people on Fox and Friends became his friends, he had Sunday dinners with the Reagans of Blue Bloods fame and was often the murder victim on NCIS.

TL;DR. Some of what your dad is telling you might not be reliable true. It could be something he witnessed or knew about someone else, it could be completely made up or he could have timelines mixed up.

Another thing about dementia is that sometimes the core personality and disposition is revealed as the PWDs social filter disappears. Sometimes this enhances who they already were. I knew my dad could be dark and cruel, but he hid it from pretty much everyone else. As his dementia progressed, he burned through social circles in 3 states and alienated both his and mom's families. By the time he was diagnosed fairly late in the game, I was just about the only person who visited them both.

Do see about adding an atypical antipsychotic to the mix. I prefer to medicate proactively on a regular schedule over the practice of "as needed". Dad ended up on a cocktail of Prozac (already on it when diagnosed), Seroquel (25mg 2 x daily) and Wellbutrin. Wellbutrin was added to try to overcome some of his inertia and apathy. It failed, but it did seem to take the edge off his desire to drink which was helpful.

HTH-
HB

PS Is there some reason you are protecting your brothers from details of this? Are they children or mentally challenged and unable to process this information? I kind of feel like honesty is a good thing. This information will lead to attitude on your part that won't be understood by them if they don't know what you know. This could have negative consequences for you in terms of support and understanding.

elisa0314

https://alzconnected.org/discussion/comment/225881#Comment_225881

On your last point: I'm not protecting my siblings, I just don't want to give them any more reasons to hate him and just leave him for dead, basically. They operate from a place of common sense and rigid logic, so this disease (and its way of presenting) make no sense to them. One brother's favorite expression is "Dad's got to realize…" and I just shake my head inside. Dad's long past operating by logic or reason; he's not going to realize that he's guilty or at fault for his family's unhappiness and make amends. He can barely figure out how a lamp works these days.

And dad was all about Blue Bloods back when he could operate his TV. He watched it over and over, all day. I wonder what it is about that show and guys like them ;-)