Feeling worthless by my partner

AnderK

Hi,

My partner has dementia, probably Alz and vascular dementia. I reached out earlier this summer about him giving up our boat. Still have the boat, but he has not gone down since late June. It is on the hard now, and he talks about next year, yet understands, somewhat, that his passion (his boat) is going away. It has been his life's blood. In addition, he can no longer drive. He is angry that "everything he loves" is being taken away from him. Also, I do everything, so he has nothing to do. This man, who can hardly walk 20 feet, who refuses to use "sticks" of any kind (walking, cane, walker) so that we are more secure leaving the house. Rather I am more secure leaving the house. He can barely unload the dishwasher without having to sit down before his back gives out. I don't know how to deal with his anger, and his profound sense of loss. I am dealing with my own anger over his decisions for years of not exercising or working out a little on a regular bases to keep himself strong. I too am angry that everything I love is being taken away from me, including him.

I have resolved to keep him home until he no longer recognizes me. But how do I deal with the anger.

Kathy

AnderK

https://alzconnected.org/discussion/66752/feeling-worthless-by-my-partner

By the way, we are youngish...he is 75 and I am 72

Iris L.

Ander, your LO with dementia is no longer capable of making plans or of making decisions.

Also is no longer capable of executing most functions of daily living, such as emptying the dishwasher and other housework.

This is why PWDs need an advocate, because they just can't do things. You have to do things for them.

If you have the correct legal documents, you can sell the boat.

In fact, you need to be making plans for future long term care. For this you need the advice of an elder attorney.

Don't sell anything until you have legal advice, because it will affect Medicaid eligibility.

Read a lot of threads. You are not alone in this.

Back pain is a separate issue. What does the doctor say?

Read about failure-free activities for PWDs.

Iris

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harshedbuzz

@AnderK

Kathy-

Welcome back. I recall reading your previous posts and wondering how you were getting on. At that time, your post resonated as something I saw my mom go through and this post does as well. Her sadness, frustration and anger are palpable.

Dad was similarly angry about the loss of independence and autonomy in his life and strove to make those around him as miserable as possible. This is not conjecture on my part-- he told me as much. Because of anosognosia he didn't realize just how impaired he was cognitively or physically; he just believed he was having a few memory lapses here and there as a "normal part of the aging process". My mom also felt some anger around the self-inflicted nature of dad's condition. One of his dementias was an alcohol-related form which she considered self-inflicted. He, like your DH, allowed himself to become completely de-conditioned physically which limited things they could do together while he was conflating stories of golfing, swimming and working out to his doctors. She also was bitter that she was not only caregiving, but she also had to assume all aspects of managing their lives and households (they split the year between 2 houses).

What helped?

Medication for dad. We got him in with a geriatric psychiatrist who put together a cocktail of psychoactive medications to even out his mood a bit. This allowed mom to keep him at home at least 15 months longer than she would have otherwise. Dad took 2 x 25mh Seroquel, 60mg Prozac and Wellbutrin.

Medication and support for mom. I got mom her own psychiatrist when I became fed up with doctors (his and those they shared) always putting dad's "needs" ahead of mom's. Her psychiatrist and talk therapist provided medication to address her anxiety which was expressed as depression and anger as well as a safe place to vent, be validated and gain a perspective that her quality of life mattered as well. I also looped her in with a local IRL support group; they supported her and when they offered the same suggestions I did, for some reason she took it to heart because they were her peers in the trenches.

I would avoid drawing an arbitrary line-in-the-sand as a placement guideline. While you surely know how the disease progresses, you don't know yet how progression will impact your DH. You may need to place if he falls so regularly that you would risk your own back helping him up. You may need earlier placement if he becomes uncooperative with you around taking meds, bathing or incontinence care. You may need earlier placement if your own health is compromised. You may find bringing in sufficient help to care for him at home as he progresses difficult because you can't find and/or afford reliable aides.

FTR, my own dad never got to a point where he didn't know who mom and I were. I had a long and crazy conversation with him hours before he died from complications of aspiration pneumonia. My friend's mom forgot who she was which broke her heart, but her mom treated her like a favorite nurse and would brag to the "nurse" about her "best daughter in the world".

HB

SDianeL

Welcome back. Were you able to get a DPOA so you can speak and act for him? If so, you can sell the boat. I sold our RV using the DPOA. He wasn't happy but it was the right thing to do. You don't need to explain it to him because he can't understand it. We went from being full time RVers traveling all over the US to a screeching halt into a small apartment. I feel like I'm in prison but try every day to put myself in his place with his world falling apart and him losing control. He told me 2 weeks ago that he no longer wanted to live this way. I cried. I understand your anger at what this terrible disease has done to your life but blaming your partner for not taking care of himself is misdirected anger. Many perfectly healthy people get this terrible disease. Your partner can no longer function. His brain is broken. He can no longer reason so he can no longer make decisions. Someone posted here and said "you can't reason with someone whose reasoner is broken" and that hit me upside the head. I changed my attitude that very day. My DH's doctor prescribed Risperidone to help with my DH's agitation and it helped him sleep better and it did calm him somewhat. I've found that keeping things routine help. Keeping their sense of control and their pride is what keeps them from wanting to use canes, walkers, hearing aids, etc. It's about maintaining control in their world that is falling apart. My DH no longer does much in the apartment. He does the dishes after breakfast and that's it. He used to help me so much. It's not that they don't want to. They can't. He can't use a phone, the microwave, the dishwasher or vacuum. He didn't shower for awhile because it was too overwhelming. I fixed that by reading the book "The 36 Hour Day". If you are committed to keeping him with you until he no longer recognizes you, you need to learn all you can about the disease and the behaviors in each stage and get counseling for yourself. Sorry but It's going to get much, much worse. We understand what you're going thru and have been there. Please keep in touch. It will help you.

AnderK

Thank you for all your responses. I do have POA, and we are moving his financial stuff to the same brokerage firm that I have while still keeping them separate. Have talked to the county aid people to assure that I don't do anything that would prohibit Medicaid should his funds not sustain his stay in a memory care facility. (We are not married although have been together for 22 years). Have visited a memory care facility that a friend's father lived in and I was as happy with that as one could be.

I read the 36 hour day and several other books last spring, and need to reread them, I think, as I have learned that one gets different messages at different stages of this journey.

I did talk with the ALZ hotline yesterday and they also directed me back to you all for support. They were caring and helpful.

Sometimes I think I am the one who is crazy, and that this cannot be real. My LO just woke me up with concerns about his upcoming presentation on building boats and where it is...there isn't one. Two nights ago he woke me because there were people rummaging around in the house...there weren't.

You all have given me lots to think about. Your experiences, while painful to read, are reassuring in this demented world we find ourselves. All of a sudden, after writing this, I think that Harry Potter's Dementors weren't so far off the mark. Except the Patronus charm doesn't work.

Going to try to go back to sleep before the new day dawns. Kathy