Sad caregiver

Whatdowedonext

I am sure blue. I work so hard to stay cheerful, keep my spouse occupied and happy. I can never meet his needs, I am always a step behind.

charley0419

aren’t we all

Cardenas1816

I’m running into the same issue with my DH (57) who has EOAD. He is constantly asking what we are going to do next, but I find myself not wanting to do anything at all because I’m so sad.

We have a state park pass and do a lot of hiking. And I’ve found a small jazz club that he likes to visit. Other than that, I am still searching for easy to plan activities.

midge333

I think what @charley0419 was saying is that you are not alone. I don't think he was being snarky but rather he was supporting you. We all have our unique struggles but we also share many of the same struggles. Early in this journey, I found great solace in knowing that others were dealing with the same issues I was. It was also reaffirming that I wasn't losing my own mind as well.

fmb

Please don't delete your post. Sometimes the obvious needs to be acknowledged. DH and I are much further along the journey, and I can assure you that many if not most of us feel the same way at times. Your post is totally appropriate. You are in a safe space among friends here.

DTSbuddy

charley0419 Stating the obvious? Maybe, but it helped me feel a bit less alone. Misery loves company. Listening to music helps, and sometimes dancing to it.

Whattodonext It's really difficult. My daughter in law, when she heard the diagnosis, said, ' Oh no, Now you have to do everything.' Starting now my DH's 5th year of fluent primary progressive apahsia, we take walks and take notice of birds, airplanes, construction, pretty sunsets. He is unable to speak or write intelligibly, but understands a handful of words. He looks at magazines and photos, which i gives me time to read a little and type. Though he is unable to play sports any more he can still hit a ping pong ball back! He does everything so slowly now, that I count it a good day when he dresses and brushes his teeth. His confusion is profound, so I do not ask anymore why he threw his shirt out the window, or put an applecore in the silverware drawer. I just celebrate the smiles and try to keep calm as I clean it up. . Most difficult is his roaming in the middle of the night, If I do exercises and stretches until he gets sleepy again it keeps my from getting angry. The yard is a mess, and the house needs repairs. But most important is keeping our last years as happy as possible. Best of luck to all of you who are coping with these challenges.

SDianeL

We all have felt like we are a step behind. It is sad. Just do the best you can. He’s lucky to have you. I found that making a list everyday and marking things off made me feel like I was in control. I focused on my DH when he was awake and did everything else at night or early in the morning. I also hired someone to help clean. When I got stressed I remembered something my favorite boss told me. The 4 D’s: Do, Delegate, Delay, Drop. I used that when caring for my DH. Do what you can, Delegate when you can, Delay what you can postpone and Drop what doesn’t really need to be done. Sending hugs. 🤗

Victoriaredux

Don't be hard on yourself. I had a "so hard" in that but really , you shouldn't put any of this on you.

Setting a goal of : "keep my spouse occupied and happy"—- is sadly challenging the very nature of the disease course. The brain of a PWD processes less and less, they can develop apathy , get overwhelmed - say they want more /different but they are losing the ability to remember and judge.

You aren't Julie on the Loveboat , no one signed up for this rotten cruise.

You are the Captain [ hopefully with better hair : ) ] - you know what needs to be done to keep your ship going with chores- household/financial. The PWD can't do , decide or triage these efforts anymore. Try to do the necessary stuff first then see about "fun stuff" afterwards.

Keeping you from getting burnt out benefits you both.