What to do when father is ok, but mom has ALZ?

dbarrylewis · July 4

I’ve posted several times and am incredibly grateful for the responses. When I reach out for advice on my mother often times the replies are from people who have a single parent they are caring for with ALZ. Much of my struggle has to do with having a father who has no memory issue at 86, and a mother with mid-stage ALZ at 84. He’s been her caretaker. She was diagnosed in 2021. They’ve been married 64 years and been in the same house for 55. My mother’s agitation escalated and it was directed at him, and between enduring this and helping her through delusions in tge night, it’s taken a toll on his health. This is why the urgent move to MC in April. We saw glimpses but didn’t realize how bad things were until that was the only option. He didn’t want to burden us and I think we were all in denial.

My question is whether other people have both parents and worked through this scenario. She misses him so much, but said she was afraid he would hurt her before we moved her into MC and we’ve all witnessed her physical agitation toward him at moments. Earlier this week she slapped him when he was visiting her at the MCF and encouraging her to eat. She is very lucid most the time and has no trouble eating, she was just telling the dining room staff she didn’t want to be served and he was telling them to bring it.

If anyone else worked through a similar parent situation, I would be interested in hearing how you handled it (eg moved mom to MC, kept her home with nurses to relieve him, etc).

Thank you!!!

SusanB-dil · July 4

Just our experience - Mom stayed at home until we lost my dad. That's when we found just how much he was scaffolding her. After being married nearly 65 years, his passing may very well have accelerated her decline, or if not, at the vety least made things more noticeable to myself and brother. We did need to move her to MC within weeks of his passing.

I know this isn't your situation, but if it helps, it was our observation of their dynamic.

dbarrylewis · July 4

https://alzconnected.org/discussion/comment/276563#Comment_276563

Thank you for sharing! I think they (the spouse) want to feel they can do it without help. That it is their responsibility. And, knowing how challenging, they don’t want to put this on us (their children). I’m so sorry for your loss. ❤️

jen ht · July 4

@dbarrylewis

Hi! It's difficult, isn't it?

I did not have your situation, but I did want to say that it is so difficult. There are so many layers to this and so many emotions. Aging is not for the faint of heart… that's what dad used to say to me (back when he could still express himself)

We don't want to miss things. We do want to help. We don't want them to get hurt. We do want to care for them. It's a lot. A whole lot.

The second guessing is so hard. It did eventually ease for me. The hard things slowly began to become confirmations that I did the right thing when I could.

You are not alone. It helped me to come here and read and read to learn pieces of others' stories that could shine a light for my path forward. I stumbled sometimes and I fell sometimes. But I tried my best to brush myself off and carry on. It is a bumpy road.

I am wishing you well. 💜

jht

harshedbuzz · July 4

@dbarrylewis

It's hard to be impacted by a situation that is ultimately in the control of someone else. BTDT except that dad had dementia and was the aggressive one. Mom was very reluctant to place dad because of societal expectations and financial concerns but reluctantly opted to when he started ideating a murder suicide.

My take on this is that this situation is very like having children with very different abilities. As much as you might want them in the same classroom, the gifted one would thrive in a GATE program while the one with learning differences would be better served in the classroom that offered the specialized curriculum.

Your mom seems fairly progressed and a bit challenging, especially for you dad. Even dad had enough social filter not to hit mom if he had an audience. That's telling. Care needs to be set for a PWD when they are struggling the most— not the best time of day or having a "good day".

Sometimes even the most devoted couples are a bad fit once they're forced into the roles of caregiver and care-ee. Mom grew into a great caregiver, but dad bristled at being prompted to do anything as such he wasn't getting meds as prescribed, ignored healthy meals and refused all hygiene. Ironically, once placed he was quite compliant for the aides who he saw as professionals there to help him. We tried in-home care first. Dad hated "babysitters" and was uncooperative with them as well. The break was never enough for mom and the house felt like a nursing home for one.

Once placed they're relationship improved a great deal

HB

Quilting brings calm · July 5

If you go to the spouse and partner sub-forum, you will see that it is common for one spouse to go to AL or MC and the other to stay at home. Either in their own home or moving to an apartment. This is for a combination of things that cause the more functional spouse to be unable to continue caring for their PWD at home. Aggressive behavior is one of those things - your parent deserves to feel safe in their own home and in fact could suffer physical harm by letting your mom remain there.

dbarrylewis · July 5

https://alzconnected.org/discussion/comment/276599#Comment_276599

Thank you so much for this pointer! I’ve begun reading through and it’s helped me understand how common the agitation and resentment can be toward the caregiver.

He has been a wonderful father and husband. That said, he does have a harder time understanding how to avoid my mom’s triggers and special prompting required at times. I feel like it’s largely due to the overwhelm of care giving, little sleep, and his own health struggles at 86. He will tell you there’s none but I can see him wince when he walks or tries to lift something and the exhaustion after a small grocery run. So I can never fault him. I’m rambling now. Thanks again for the pointer!!!

April23 · July 5

I have seen my dad experience caregiver resentment with me as his child/agent also. It happens I think to some degree no matter the dynamic. He has come to associate me with his loss, which is totally understandable and I don't take it personally. It's kind of a no-win situation for the caregiver unfortunately. But of course it's much harder emotionally when it's the spouse.

What to do when father is ok, but mom has ALZ?

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