Social distancing for caregivers

dlobbs

Just wondering if other caregivers feel like they have lost all social connection with the outside world. My DH has isolated us with his bizarre behavior and obsessions. There are too many weird behaviors to name when we go out in public. I have actually started avoiding outings due to embarrassment. He has no social boundaries and talks to strangers like they are old friends.

sandwichone123

Yes. My dh was in memory care, but I started to notice that families might be uncomfortable because, while he loved children, his gaze was veering outside the norm. Their filter is broken, right? So he's looking.

One outing he urinated in the drinking fountain, but the very last time I took him out he decided the best place to urinate would be between the (busy) drive-through and the entrance to the restaurant. At that point I decided it was too risky to go out at all.

Damiross

What I have noticed is that it's hard to get any of our friends to visit with my wife, especially now that she's in memory care.

What really bothers me is that her son does not come out to see her. He came out a couple of times. He lives only 1 hour away. I didn't say anything to him the last time he came here. He said he was coming because he was going someplace else too and his mother seem to be more like an add-on than somebody should see without any other reason other than it is his mother

Chance Rider

https://alzconnected.org/discussion/comment/274191#Comment_274191

Oh, how I relate to the challenges of my husband urinating wherever and whenever the urge hits!

On the way home after a 3 day visit with his son, my husband decided that between the pumps at the gas station was handy.

About a month ago he got agitated with me and wandered around the grocery store we were in. Apparently he asked a clerk where the restroom was. The in-store restroom was being remodelled and he didn’t understand her directions to the temporary bathroom. So… being the resourceful guy that he is, he went into the restroom being remodelled and tried to urinate into the toilet drain hole.

I shop alone most of the time now but when he comes with me I make sure he doesn’t wander. Plus, he now wears incontinence briefs with an extra pad. It’s like having an adult sized toddler… I never had kids though.

Jgirl57

yes dlobbs, it can be very isolating . When my DH no longer was able to be redirected in public we stopped having outings. Sounds like the behaviors we have experienced . We take drives and go through fast food drive thrus for milkshakes or a drink. That’s the extent of our time in public . I do have two days a week that a care companion comes a few hours so I can get out on my own. We started with just one time per week and eventually progressed to two times per week.

Damiross

"It’s like having an adult sized toddler… I never had kids though."

I never thought that I would have children. Unfortunately, As I got into my late 60s, I got a child in the form of my wife of 20 years.

My mom (88 years old, still sharp as a tack) said they never heard of dementia when she was growing up. People did have a 2nd childhood. I can see agree with that. My wife will get tired yet she going to bed. She hates to have a shower. She is no longer toilet trained. .Perhaps the saddest thing about reverting to a second childhood is that she can no longer read.

easy23

https://alzconnected.org/discussion/76223/social-distancing-for-caregivers

One of the first signs of dementia for my husband was that he would talk at people rather than have a conversation. He was full of opinions and stories. People started avoiding him. It's only in looking back do I realize what was going on. Now that he is in a nursing home he gets no visitors and no one calls me to see how he's doing. It is all so sad.

ChrisAven

https://alzconnected.org/discussion/comment/274216#Comment_274216

I see so many people like this these days! "talk at people" and "full of opinions and stories". What in the cosmic chemtrails is going on here?

dancsfo

I realize it's difficult, but it's important for the caregiver to preserve some connection to their old friends and relatives. Otherwise, you can get depressed or lonely and the stress builds up. I admit that even a friendly phone call with friends when the PWD is awake is difficult, since you never know what that PWD will attempt to do (or ask from you) and I have to often cut a call short.

I have set up phone call "appointments" in the evening hours after PWD goes to sleep, and that has helped me somewhat. Of course, there's online communication (like this forum) or text message/email, and if your friends feel comfortable with that, I'd recommend doing whatever works for you to build some external connection. But in person meetings are better.

If you don't do something, it's like being imprisoned, for example, with a TV showing dementia friendly shows while set to max volume, and same stories are told (not a conversation) about topics from 1970 or earlier. After many years of that, it can raise one's stress, with blood pressure gets higher even with meds.

So a caregiver needs get respite in whatever ways you can.

harshedbuzz

Would a day program for PWD be an option? How about meeting up with other couples at a Memory Cafe?

dlobbs

https://alzconnected.org/discussion/comment/274216#Comment_274216

That’s one of the first things I noticed too. Talking at people and not wanting to hear replies or comments. Actually getting angry and upset when people disagree with what he said. He became hyper opinionated about topics. He wonders now why no one calls or visits. Sometimes I want to scream it’s because of the way you speak to people but I don’t say anything and make excuses how everyone is so busy.

tabithasukhai

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I've found this to be the most surprising part of caregiving; seeing how avoidant people can be. I guess everyone deals with anticipatory grief and post-loss grief differently but I wish more of the hands off relatives understood that caregivers need care, too. Even if it is just in the form of acknowledging that they dont have the capacity to be more hands on and that they are thankful for our efforts. A little goes a long way and it is astouding to me just how little some people have to give, while others give EVERYTHING.

tabithasukhai

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dlobbs

https://alzconnected.org/discussion/comment/274339#Comment_274339

I think eventually it will be an option if I can find one. I live in a very rural area.