My DH wants my undivided attention

Hi Mathreader,

Yes, the shadowing is very difficult, and one feels trapped. You are not selfish. We are need alone time, socialization and intellectual stimulation. You must look out for yourself to survive this dreaded disease. When I first started on this site. I stated that I feel like a caged bird, and, frankly, I still do. I want to scream everyday for my freedom and peace.

@mathreader

You have my sympathies. Your DH sounds very like my dad. Dad didn’t present with the classic physical shadowing where he was always at mom’s heels. He was too lazy for that. Instead, he wanted her sitting with him unless she was actively getting him something— a snack, a drink, a blanket, the remote, … Mom’s a bit hyperactive by nature and found this soul-sucking and agitating. If she escaped to take a call or if I dropped by, he would act out much like a bossy toddler.

IMO, the most critical thing you can do as a caregiver is to put your own oxygen mask on first. For you, that means a break but you mustn’t call it that around him. A day program would be great if you can manage it. Dad was not the type, so it meant bringing in aides once he could no longer be alone. Mom didn’t tell him she was going out for a break from him, she invented some errand or appointment he wouldn’t or couldn’t attend and head out. When we brought aides in, we never said they were caregivers to him, instead they were cleaners to help mom or aides ordered by her doctor after a surgery. The best fit aide for him was a pretty younger woman who looked a bit like a younger version of mom. He got to a point where he’d engage with her but still didn’t accept actual care.

Mom’s physical health was much worse than dad’s, so I wasn’t going to put her needs on ice awaiting his demise. I visited several times a week. I made it a point to visit with him first and always brought him some sort of treat. He could tolerate about 10 minutes of a visit and then mom and I would take the conversation elsewhere. He’d fuss and ask for things which I would bring to him giving her a break. Sometimes she’d catch a short nap. He’d ask why mom didn’t bring it to him and I’d say she was in the bathroom. Rinse and repeat. We also celebrated holidays. He didn’t like this at all, but he could retreat to his room and mom deserved a little celebration. He’d be really awkwardly unpleasant to try to make us go away. We’re all adults and capable of understanding of the situation so it worked for us.

HB

My DH is the same - he is now in memory care due to aggression and agitation, and the last video call we had with his Dr. lit a fuse in him because I talked to the doctor and wouldn't give him 100% full attention. This was a geri psych that we finally were able to speak with virtually - way too hard to get him into a doctor's office - and he had a lot of excellent advice and help. However, my DH was so angry that I took my eyes off him and spoke with the doctor. I had been second guessing myself in placing him and was feeling so very sad the day before this happened. This reminded me of how angry he can get when he doesn't get my full attention. For the last 6 weeks, I've alternated between extreme sadness and missing him, and relief that I can actually have a conversation on the phone or even in person. I feel like I have PTSD after years of dealing with this. But, the relief almost immediately gives way to the grief. There really is no easy way out of this -

I am in a similar situation with my wife. I will sit down to make phone calls and pay bills, etc. and she sits down at the table with me. I explain what I am doing and she gets annoyed and usually walks off. At first I felt guilty but now it has just become part of dealing with the disease.