Anger. Guilt. Anger….cycle

Yes I too ride the cycle of anger and guilt as my wife's disease progresses faster than my tiny little brain can keep up with. I won't bore you with stories but I share a little more or less with everything said. What I have noticed are the intensity and duration of the anger part of the cycle reducing the guilt part of the cycle. I used to get pissed and yell and scream and say hurtful things and then feel horrible afterward. After a couple of cycles of that I just avoid the anger part so I don't have the guilt part. I use deep breathing as an alternate to throwing tantrums and it helps. Like any other self improvement exercise it is a work in process. Every now and then I still lose it but not as intense and not as long. While calm I try to remember both throwing tantrums and deep breathing relieve the tension of anger. It's healthier to choose the deep breathing. The tantrums usually cause more problems than they solve.

She went into a memory care only facility in July, but I'm not very happy with it, or perhaps she's not very happy with it. She doesn't complain, but she's not eating well (admittedly the food there isn't good, but I can eat it), doesn't interact with other residents or participate in activities, and has a roommate who is almost comatose, but she doesn't want to switch. She doesn't bathe regularly and blames it on the facility, but they tell me it's because she doesn't want to and doesn't change her clothes. I wonder if this is a willful rebellion against me for putting her there, or if it's indicative of cognitive decline. There are some nicer facilities in the area, and I could try to get her into one, but my impression is that it wouldn't make any difference. Her ability to have intelligent conversations is still sharp, but she is starting to ask the same questions about appointments, etc. If I move her, I'd have to buy furniture and a GPS tracker so she wouldn't "escape." She just won't talk to me about how she feels and what she wants to do, and the staff at her facility aren't very helpful.

Yes, I know how you feel. I feel used up, and burned out. I have not had so much as a day of vacation from 24/7 caregiving for over 8 years. The shadowing, paranoia, panic attacks, lack of participation or meaningful conversation, and no assistance from other (numerous) relatives, has taken all the joy out of life.

I have been 24/7 caregiving for a husband with Lewy Body Dementia for 4 years. I feel all the same emotions everyone who has posted feels. I try to find joy in the rare times we can have a near normal conversation or when he repeats some behavior from the past like talking about every power plant, we pass that he worked on as construction engineer while we travel to Cape Cod as we are in the long slow process of moving back home. Before his dementia, it used to drive me and the kids crazy on the several times a year trip from South Jersey. Now it is a pleasant reminder. I also find joy when he gives me directions as I drive (he no longer drives) on the trip although we have been driving it over 40 years. Again, it used to annoy me, but now I take joy and pleasure in it. Hopefully, everyone here can find those types of joyful moments, no matter how seldom they occur.

I don't get pleasure out of hearing my husband talk over and over about his past, his achievements, all about his childhood, etc. I know his stories better than he! He lectures me over and over about how things should be done.
How do others cope with that?

Hi @jillsy, sometimes I tune out, but keep one ear open. My husband's stuck in his childhood mostly, having forgotten much of his past. Now he comes up with some fantastical stories about his parents, sister, etc. Sometimes I ask questions so we can converse and maybe get some insight into how his brain is working. I don't argue with him about his delusions. Other times, I ask a question to bring the conversation back to the present.

The one day I was on the phone with a friend and ignored my husband's obsession with the gardener leaving, he went outside to say goodbye, fell over a box left at the front door, and fractured his hip. Surgery, a week in the hospital and three weeks in rehab followed, plus a long recovery at home. That's why I said keep one ear or one eye open. Watch for changes. Sometimes, longstanding behaviors just stop. My husband's been meticulous about shaving, but this week he had a dental appointment and didn't shave beforehand, which I didn't notice until we were at the dentist's office.
He goes to bed early and stays there so I have a few hours of quiet time at night, to work on a hobby, read, watch tv and chill out.
As caregivers, we have to find ways to get through these trials with grace (as much as possible!), stay the course and, somehow, give ourselves what we need to keep going. All the best.

Up until the time he had his first fall (which was not in the shower) , my husband showered every day of his life, sick or well, but he began to be fearful and tentative, even after installing grab bars and a shower seat. Now he showers on an "as needed" basis and that can be a 2 week stretch. As someone on one of these topics said, 'No one died from not showering.' A quick once-over with a warm washcloth and a pour over hairwash as needed have been good solutions for us.

Hi @crankyyankee, my husband was resistant to showering and washing his hair for a few years before his fall, and like yours, he showered everyday (before the onset of Alzheimer's.) After he broke his hip, I had the tub removed, a showerbed installed, grab bars and a seat. Rather than give him instructions from outside, I decided to go in with him. Now we have a routine of showering every other day and he enjoys it. If he balks sometimes, we'll just skip it for a day.
I asked why he didn't like showering before and he said he didn't know what to do.

I understand and empathize with those who keep their LO's at home to care give for.

Me, I cannot do this, I am one of those people who feel that I am still entitled to a life and intend to live it.

I have 2 in facilities, one in MC the other in AL in the same home. My brother & I care for them, we are just not on top of each other.

They are well cared for, fortunately they both planned for this monetarily. My mother is 98 and in AL, my step mother is 85 and in MC. My mother loves it, enjoying her last years with others, activities and she doesn't have to lift a finger everything is done for her. My stepmother at this point doesn't even know where she is.

We each chose our own path in life, all one can do is roll with it. Some 50% (taken from aging care.com) of home caregivers die before the LO they cared for, that tells me a lot about the stress and strain involved in choosing to do this.

I wish all of you home caregivers the very best, remember to take care of you!

Hi Dollyme!
I certainly understand why your mother and step-mother are in facilities. I put my mother, diagnosed with Alzheimer's, in a nursing home after she broke her hip. She was nearby and I was able to visit her almost every day until her death 2 years later.
But it's different with my husband of 50 years, who has always taken care of his family and the house. I have only noticed his decline the last few years, and he was diagnosed with dementia about a year ago, probably Lewy Body or a mix of Alzheimer's and Lewy Body. We have an appointment at Mayo Clinic to perhaps get a more precise diagnosis and treatment. Right now he uses Rivastigmine patches. So far he takes care of his own hygiene. Some days he is able to function pretty well, some days he is more confused than others.
So we'll just muddle along as best we can until some event causes us to make a different decision. I'm grateful for the support from these Mayo Clinic newsletters.