My husband’s dementia continues its daily thefts and I continue my daily reassessments of what is and is not mine to do. Our schedule, such as it is, is mostly around getting the ADL’s done. How much of my job as a caregiver is also about keeping him entertained? I haven’t found anything that works on that account.

I seem to be his only anchor to who he thinks he still is, so I try to be present with him as much as possible — moved my desk so we can be in the same room while I work on taxes, etc.. He looks to me for answers, direction, help, etc. But he also spends an inordinate amount of time sitting in his recliner, looking at junk mail, perusing magazines, reading the occasional Wall Street Journal article on his iPad, looking at his photos (some of which have mysteriously inserted porno poses into our family’s memory collection. He may comment on how interesting an article was, but of course is unable to tell me anything he read. He does not like cards, board games, jigsaw puzzles, brain teasers, etc. Watching TV together is mostly him staring at the screen in between dozes. He doesn’t seem to follow the storyline, but does seem to enjoy having something going on that accepts his attention without requiring anything of him in return.

My question is, how much social-director and activities planner do I really need to be? It is the MOST frustrating part of this process for me right now.

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I don't know the ideal answer but I am in same boat with my mother and your question resonated so much with me! She has no interest in puzzles, color by number or anything unless I'm sitting right next to her and doing it with her. I get mentally and now even physically exhausted by putting on YTube videos for her, making sure she has not messed up the bathroom and other ADLs

The bottomline, according to this forum, is to make sure your husband is safe, clean and comfortable. So by that measure, you don't need to be the social director but I'm social director for mom so that I get a break, I can do my chores around the house and she's not following me, looking for me or talking gibberish or wondering when the next meal is (even tho' she's well fed and gets plenty of nutrition).

Good luck to you!
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Reply to wearynow

My Moms one passion was reading and Dementia stopped that. She nor I were game players, card players or did puzzles. So not something I am going to sit down and do with a person with Dementia whose attention span is about a minute. Yes, I have no patience. To me none of them relax me. Coloring? Oh God I hope when I get old they don't ask me to color. 😁 I know, my girls are going to have problems.

I am not an entertainer. I told my grandson that MomMom bakes cookies but I don't play. My girls knew that too. I made sure they had what they needed to create (both artistic, Mom not) but they did the work themselves. So what did my Mom do, sit in her area and watch TV, which she rarely did at home. We went out to dinner most nights and usually found someone she knew to talk to. Eventually, though, she was getting no stimulation at my house. I placed her in an AL where she walked the hall (went in a square and always ended up in the common area) had socialization, activities and entertainment. She seemed much happier.
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Reply to JoAnn29

Here are a couple of ideas you may consider. My dad has passed now, but we had similar issues. He had a window where he could see out from his bedroom so we put out bird feeders- he loved watching them. If you have space, try putting in a fish tank. Very therapeutic & interesting to watch. Music is always nice. Dad wanted the paper every day though it got where he didn’t follow anymore; it was more his habit. We had people stop by with their dogs a couple times a week and he LOVED it. Even with late AZ he came alive when holding or being with a dog. Sometimes I just sat with him and listened to music or watched tv. He slept off/on but was glad when I was around. It’s tough- but we do the best we can with grace & love in our heart. Good luck and thank you for being there- that’s most important!
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Reply to DadsGurl

I have a similar problem. My Mom's bedbound & has low vision.

I keep the TV on for her, she can listen to her favorite channel & music channels. She can call the dog to her bed & drop the dog a biscuit, but she can't reach the dog to pet her due to partial paralysis. I tell her anecdotes about cute things the dog has done lately.

We don't have family left to visit, and her friends have all passed on, so no visitors that way.

She complains about not being entertained. But, sleeps off and on all day. It's a very difficult situation. And, I believe it's very common.

One of the things I do is "interesting news." Will find something on the computer I read or saw that's funny or odd - and will tell her about it. She really enjoys that. Sometimes one of my friends on FB that she's met in the past will ask about her, or have something interesting in their life go on. I'll tell her about that, too.

When I prepare meals (her hospital bed is in the living room) I'll sit and chat with her during meal prep, etc.
I try to chat a bit whenever I see her & she's awake.
I'll also put her in her Hoyer Lift & lift her into the wheelchair when she asks, but it's very hard for me to do by myself. She's not able to move the wheelchair on her own, but it's a change of pace for her.

She also has digital audio books from The Library for The Blind but doesn't listen to them too often anymore.

Guess there's not much more we can do to entertain someone else ourselves, unless they're able to leave the house or walk around and do things like walking in the garden, etc. safely. Because safety is the biggest issue with Caregiving.
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Reply to LavenderBear

Have you looked into Adult Day Care?
It will give him something to do for the day and it will give you a break.
A caregiver that comes in 2, 3 or more times a week can keep him occupied and do some tasks around the house that will help you.
Does he still have friends that would come and visit for an hour or so once a week? Will he do things to help you out?
Sort socks, fold towels, dust, wash dishes? Anything that he can still do that will make less work for you is a bonus. Do not give him a task if it means you will have to do the job over again because it either was not done the way you wanted it done or he made a mess doing it.
( if you do hire caregivers, or if you allow him to help with some things put it in your mind that as long as it is done it means less that you have to do even if it is not done exactly the way you would do it. If they don't fold the towels exactly the way you do does it matter as long as they are folded and fit on the shelf where they are supposed to go?)

And a side long as he can still get up, go for a walk and you can have a conversation with him take advantage of that. Forget washing the kitchen floor or doing that extra load of laundry. Enjoy the him that you have now, it may be gone next week then you will have a bit more time to do the floor and the laundry. With each decline he has you will loose a bit more of him and each decline will bring a change. You can lament what he can no longer do or you can take joy in what he can still do. Kinda the Glass is half empty version for dementia.
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Reply to Grandma1954
Ioanna Sep 2, 2021
What a wonderful reply! How kind you are.
I hired a companion caregiver for my 99-yr old aunt with mod/adv dementia and nearly immobile, with not-so-great vision and this lady was awesome for 6 years. She drove her around and chatted with her, took her for walks, etc. Now my aunt is a fall risk so we had to go to a differently qualified aid, but this one also keeps her busy. My aunt still knows how to play a certain card game fairly well (and we do allow her to go by her own rules sometimes) and Rummy-Q. A few years ago I bought several DVDs of her favorite musicals but she couldn't seem to follow the story line and sometimes became alarmed if there was any violence or "bad things happening" in them, BUT fast forward to this past year and now she watches them every day with the closed caption words on the screen -- she keeps up by reading the dialogue. We also ask her to help us with "chores": she folds towels and sorts socks and plastic utensils and things that we put in front of her. Your husband can do this too: it gives him a sense of purpose and you are not directly entertaining him. He can sort or pair nuts and bolts, put together Duplo blocks following a pattern that you draw up (and there is no wrong way for him to assemble it), he can chop veggies, cut old t-shirts into rags, etc. He can do the same takes multiple times a day if he doesn't remember doing them the first time. A bird feeder is usually very entertaining placed where he sits most often. Fish tanks are too much work for YOU unless you hire a service to maintain it.

Or have you considered adult daycare options? He doesn't have to go every day but you will surely need the breaks. You are not obligated to fill his every waking moment. One word of caution about his internet access: this is the gateway to scammers and catphishers (porn can be the least of your problems) -- so I would make sure you start either monitoring or ending his access. My 92-yr old mom has a subscription to Lumosity where she plays "brain games" every day, or plays card or tile games on her tablet.

One thing to keep in mind is that what he likes to do can change as his dementia progresses. My 85-yr old bed-bound MIL with mild dementia in LTC was actually reading a novel when we went to visit her the other day. In all the years I knew her she never once read a book, not even to her grandkids. We were so shocked -- and she was really enjoying it, said she couldn't put it down.

I wish you much success in finding things that occupy him so you can get some peace.
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Reply to Geaton777

I have a similar situation with my MIL. I really do feel like her “events coordinator” because she has no hobbies, and has so few interests.

Now, right now our routine is shot as I’m in the hospital being caregiver to my dad who suffered a brain bleed, but once I go home again and life returns to some sense of normal, a routine is the first thing I establish.

She also just likes company. I don’t really look at it like I’m her entertainment. Just…company. Someone to talk to occasionally, and I’m there if she needs anything. We sit outside in the gazebo and I work on my computer, and she just enjoys the fresh air and the music. I had bought her newspapers (which she used to love reading), but I found that she can’t understand what she’s reading anymore, so I might try some vintage magazines next (from the 60’s) and see if she finds those more interesting.

I think we look at their life and imagine that we would be bored out of our skulls, but (I don’t know about your husband), but my MIL doesn’t seem particularly bored. I don’t think they need the same amount of stimulation that we do. I’ve talked to her new PSW that will be starting in a few weeks, and she’ll take my MIL to the mall once a week in the morning to get a coffee and look at the shops. Just something different to do.

Good luck.
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Reply to Lizbitty
Isthisrealyreal Sep 2, 2021
Liz, Good Ole's Days and Reminisce are great magazines with short stories about days gone by. You can even get large print.

Hope you find something she can follow.
A friend's mother has Alzheimer's, and her dad hired two people to come to the house and do activities with Mom every day to keep her stimulated. It seems to have worked to some extent in that her Alzheimer's hasn't progressed at the pace most people would expect. However, that also means she's had Alz for more than 10 years now, and they can say she's played thousands of games of Scrabble and Soduku.

Perhaps hiring a companion for your husband for a couple of hours each day could help, or an adult daycare or senior center.
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Reply to MJ1929

Save the magazines and junk mail to be reused over and over. Since those things still occupy his time, use them. Whatever he selects to do on his own, let that happen. It may occupy his time and yours.
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Reply to my2cents

I'm not sure how much entertainment is required, as far as his wellbeing is concerned at least.

There used to be a popular poster with the caption "sometimes I sits and thinks, and sometimes I just sits." It seems to me that some older people, perhaps with vision and hearing loss, who we think must be bored to screaming distraction, are actually quite content to be alone with their thoughts. I certainly believe that our boredom threshold tends to rise over the years (in inverse proportion to our tolerance-of-active-nuisance threshold, perhaps).
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Reply to Countrymouse

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