Anger. Guilt. Anger….cycle

My wife about two and half years ago may have had a stroke which created some kind of lasting brain damage or quickly developed dementia. She just stopped doing anything--driving, cooking, watching TV, calling or getting together with friends, cleaning, changing her clothes, and bathing. She didn't want me to leave the house and didn't want anyone to come over. I finally got her place in a Memory Care Center so I could have some quality of life, but we still love each other and visit often at the facility. I don't want to bring her home, because I'm afraid she won't want to leave. She wants me to stay over there as long as possible, which ends up being more than 3 hours or so, every other day. That's a little much for me, since she doesn't say anything, but I take naps or talk to her roommate or roommate's relatives. I guess I should consider myself lucky.

I share your pain. And I mourn the loss of the relationship we had until Lewy came to visit. Will celebrated 50yrs last November. He doesn't remember it & at the time, he did not recognize our older son (thought he was Sanat Claus, but he hardly resembles Santa), our brother-in-law or our oldest grandson! The only thing he remembers is seeing our daughter in the dress his mom wore as mother-of-the-groom at our wedding & the ride to the restaurant where we celebrated. I don't know my husband anymore either & with the Capgras syndrome, he doesn't always recognize me, other family members or our house, in which we have lived for 42 years this Saturday. Occasionally though, there is some joy, when some of his old characteristics appear. More often now that he has been on Nuplazid (34mg) for 3 1/2 weeks.

Hang in there, as we all do.

Pauline (Lena)

In the moment is so easy to feel like I am the only one that feels the way I feel. It’s reassuring to know it’s not just me. Such a roller coaster of emotions.

Take care:)

1K195 you are so right! I don’t have the anger anymore. The person that posted “one day at a time “, that one day turns into one month, one month turns into one year and that turns into 5 years and then ten years and on it goes! No I don’t know the person I once was. The person I am now is tired, passed being sad, I just feel like I exist to clean and care for my dh (dear husband) . Not even sure if there is truly life outside of the isolation and loneliness. Not trying to be a downer but we have been on this horrible journey for way too long, over 22 years!

I'm probably going to feel the anger and guilt cycle today, the 4th. If I don't visit my wife in her memory care facility, I'll feel guilty, but if I do, she'll try to keep me there as long as possible, and I have other things to do today, so I'll end up angry at myself. As I mentioned before, she knows me, and can carry on a conversation, but doesn't offer anything in return, and other than seeing her, it's not a productive use of my time. I have to take her to an MD appointment tomorrow, anyway, and then go back on Thursday for a "new residents' caregiver" meeting. I feel like a taxi driver, where I am the driver and passenger.

Much as I hate the song "Let it go" & the movie "Frozen", I do find it helpful whenever I start to slip into the anger (frustration) / guilt cycle (which happens too often), I try to take a deep breath, maybe a huge sigh & remind myself to let it go.

So far today has been a somewhat good day. But then there is not much going on.

Try to hang in there. It's all we can do. As we all know, it will all end someday, unfortunately &7 sadly.

Pauline (Lena)

You too.

I’m so sorry it has gone on so long for you. It’s been nearly 12 years for us and I feel the same, as I clean, cook and care for my husband. I miss conversations. He is pleasant and asks how I slept, but then asks what day it is. A new wrinkle: I had a heart attack in May and have severe coronary artery disease. I hope with exercise and some diet changes, I’ll be around for quite a while, but am feeling a lot more mortal. The options will not be good for my husband, if I die first. He will not be able to remain in our home, which makes me sad, but all I can do is try to remain healthy and not dwell on those possibilities. Even with help from an eldercare attorney, with plans in place, there’s nothing I can do but keep on cleaning, cooking and caring for him.

@joyd3, your post is so expressive, capturing the bittersweet heartache of what you are experiencing. I feel for you. Maybe there is a special place for the caregivers who give their all and more, day in and day out, without respite, wherever that is.

Here's a new twist on my situation that changes things, a little. I took my wife to her neurologist a few days ago for a checkup, and she performed the mini-mental and a few other verbal and paper and pencil tests. My wife scored better than she did the last time, and the neurologist now believes that she doesn't have dementia but has permanent memory loss from the ECT treatments she received in 2021. I feel alternatively sad because I authorized those treatments as her POA (nothing else worked to restore a degree of normalcy -- she experienced delusional thoughts, wouldn't eat, and wouldn't take her medicine), but relieved that while permanent, she probably won't experience further loss of memory. The neurologist said she could move out of Memory Care and into Assisted Living. The interesting thing is that my wife wants to stay in Memory Care. I think it's because she likes her roommate and is her unofficial private nurse's aide. Go figure!