What to do… Help!

Hollopeter3

Hello! I have been on here for about a month or so now and have found everyone so very helpful. I have some thoughts I’d like to share and hopefully someone can give some insight into whether or not it would help my situation.

So my dad has VD, or so we have been told. He is in a NH that he hates and he “WANTS TO GO HOME”. He blames me for it all, he has called me controlling, said I have brainwashed my mom and sisters against him and I am a down right B!TCH. The truth be told if it weren’t for me, my mom would have divorced him a few months ago, my sisters would not be around and the financial situation would have ruined him.

What do I do?!? Do I stop everything and let the others step up and figure it out, do I continue in the background and stay out of sight, or do I just push through it and continue what I am doing?

It is funny he has a cell phone, which I would like to take away, but when he calls he calls me bawling and saying my mom is cheating on him, saying he isn’t going to be around much longer and that he wants to go home, then he calls my sisters and asks them to be his advocate cause I am keeping him prisoner at the home. He knows his audience so is it all an act or is it really the disease?!?

The thing that is keeping him there is that he can’t toilet himself and refuses to wear depends, he can’t walk and has no safety awareness whatsoever, his ADLs are completely dependent on help. Mom cannot care for him in their rented duplex that is not set up for handicapped people, nor do they have the funds to move anywhere else on their fixed income. My house is not equipped to handle them either, nor my sisters’s houses either.

I just want to know I am doing the right thing… ugh😔

All ideas are welcome. Thanks!

SRK82

Your dad sounds so much like mine at this point. I moved in with my dad in January because he could no longer safely live alone. My mom passed away several years ago, I'm an only child, and I'm his only family member. While that means I don't have other family members disagreeing with me about his care, handling all of this alone has been really hard.

My dad has always been a difficult and manipulative person, and his doctors and I believe there were longstanding personality issues well before the dementia. That has made the question you asked "Is this an act or is it really the disease?" .. one of the hardest things for me too.

I've actually caught my dad pretending to be more confused than he was in order to get something he wanted, and I've watched him change his behavior depending on who he was talking to. So when he's suddenly coherent or seems to know exactly which person to call and what to say, I've had that same thought: If he can do this, how much of the rest of it is real?

What I'm slowly learning is that it doesn't necessarily have to be one or the other. The dementia is real, but the personality and behaviors he had before dementia didn't just disappear. He can be genuinely confused, frightened and impaired and still know how to push certain buttons or appeal to different people to try to get what he wants. Sometimes I honestly don't know where one ends and the other begins anymore.

I understand the guilt you're describing too, and it's horrible. I just placed my dad in a nursing home he hates, and even though his doctors have repeatedly told me it's necessary, there are moments when it feels like I'm doing something terrible to him. He has essentially no safety awareness anymore, though, and I know that bringing him home would put him at serious risk of hurting himself and could also put me, my daughter and our animals at risk because of his impaired judgment.

I wish I had a better solution for either of us, but I wanted to tell you to keep going. Keep advocating for your dad's safety even when he cries, blames you, or doesn't understand why you're doing it.

One of my dad's doctors told me something that has helped me: I have to allow myself to be a little "selfish." She said yes, he needs to be in a NH for his safety. But even if I could somehow keep him at home for a awhile, the toll of providing that level of care would be so hard for me. My health, safety and quality of life are allowed to be part of why I made the decision to put him in a NH.

This is the hardest thing I've ever had to do, and I still question myself constantly. So I can't tell you how to feel okay about it because I'm not there myself yet. But from another daughter living through something very similar .. his anger at you doesn't mean you're doing the wrong thing. His wanting to go home doesn't mean home is safe. And you matter in this equation too.

H1235

Your dad is where he needs to be. Try not to second guess yourself or feel guilty! I have always thought that dementia amplifies moms less desirable character traits. This has often left me wondering is this mom or dementia. I also think she has no concern for hurting my feelings (lack of empathy is very common with dementia) and wonder if she is saying how she really feels without a filter she may have used (or tried to use) before dementia. I get a little frustrated with people that say it’s not them it’s the dementia. I thinks it’s probably a bit of both. If you feel like the anger directed at you is so bad that you question visiting, I would talk to his doctor about medication for anxiety or an increase. It’s not just you that is struggling here. Being angry like this must be difficult for him too. If doctors don’t seem too concerned, record a conversation and share it with them. I would block his number on your phone. Call him occasionally to check in. You could always call the facility to see how he is doing. As far as visits go, you might try bringing him a treat. Keep the visits short and avoid topics that may anger him (I know sometimes that’s impossible). If he starts getting angry say goodbye and leave. I have walked out of visits a few times. I feel horrible and guilty doing it, but I think it’s better than all that anger being directed at me. I think medication has helped mom a lot. Her moods still seem to go up and down every few months, but still nothing like before the medication. I hope you can find a solution.

Hollopeter3

https://alzconnected.org/discussion/comment/279670#Comment_279670

Your words mean so much to me I am barely holding it together some days. My husband and kids are a big priority in my life and I feel like I am letting them and everyone down lately. Thank you for sharing your experience! While it sucks we are in the same boat it is comforting to know that someone out there is going through something similar. I appreciate you!

Hollopeter3

Thank you for the advice, I appreciate your help. I may try the treat and the walking out if need be. I have gotten pretty good at keeping calm around him but I don’t always Know what to say to de-escalate the situation, so maybe when I run out of words to say I head out.

terei

Just because he calls doesn’t mean you have to answer. Also, it is not hard to disable a phone. the facility will call if you are needed. Your health is actually more important than his. You have other family members that depend on you. Step back a little. I know its hard, but contact after contact probably increases his agitation.