Dad won't let Mom sleep (or clean or be on the phone)

whollyfool

Hello all,
Apologies if this is somewhere on the forum already, I wasn't sure how to search for it.

My dad was diagnosed with dementia about 2 years ago. He wants my mom's complete attention and so she has trouble going to care for her sister or being on the phone or internet or cooking or cleaning or sleeping!

We help as much as we can and sometimes call when she is out of the house (we can't come sit with him because he "doesn't want to be babysat") but it's not the same and she knows she will have to deal with him when she gets home and the longer she is gone, the bigger handful he will be.

This has gone on a long time (since before we knew he had dementia) and I'm very worried about her. Does anyone have any ideas how we can get around this idea of anyone else sitting with him "being babysat"?

JulietteBee

You could just go visit your dad when your mom is gone. If he complains, tell him you planned on visiting them both, and mom just lost out on your visit.

whollyfool

Thank you for your comment.

I live an hour away so I think he would know…. My brother lives next door and he can get away with maybe an hour before Dad starts looking anxiously for Mom.

What I would really like is to get her some respite care. :(

SDianeL

Welcome. Sorry about your Dad. He is shadowing due to anxiety caused by dementia. He should no longer be left alone at any time. He could start a fire and not know what to do. I got my DH to accept a caregiver provided by the VA by telling him it was for me. So I could go to my doctor appts. The first time she came I stayed home and just stayed in another room. The second time I left but came back in 2 hours. After that my DH asked if “his lady” was coming that day. If you don’t think that will work think of another fib. I would speak to his doctor about medication for anxiety and agitation to calm him. A Geriatric Psychiatrist is the best type of doctor to manage anti-psychotic meds for dementia. Get a referral to one asap as it may take awhile to get an appointment. Be specific about his behaviors when he sees the doctor. Have your Mom read the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings or Teepa Snow. You and your brother should also read the book and watch the videos. They will help you understand the disease and provide caregiving tips.

H1235

I agree that meditation for anxiety may help. I often find myself doing everything I can to avoid making mom upset or mad. I have often found this is a losing battle. But the bottom line is she needs to be safe. There are some times when he is just going to to get mad and that’s part of dementia. It stinks. If there is some story you can fabricate to explain why you are there great, but if he doesn’t buy it, well he still needs someone there with him. Like you said your mom needs a break. Do what you need to to help her and if he doesn’t like it, it will just be an awkward, uncomfortable and very tense visit. I’ve had many of them. Maybe if you bring a favorite food, sweet or something to distract him, he will get over it more quickly. Good luck.

whollyfool

https://alzconnected.org/discussion/comment/260451#Comment_260451

Thanks so much for giving me a word for this behavior! "Shadowing" Now I can do more effective research. <3

That is a lot of great info and I will reread it a few times to get all of it in my head.

He is on some meds that are helping him but I can't get Mom to be specific with the doctor because he is there and she doesn't want to hurt his feelings.

I think that Dad is "normal" during the day but he sundowns pretty hard some days, especially if he is stressed. That is when he usually has trouble like not being able to get out of the recliner. :( Do you think he still shouldn't be left alone during the day? She's been at ER with her sister a few times lately and you know that is not fast.

They just moved further away from me and I can't drive anyway due to some health issues of my own. I hate being so useless. I do call him when she has to be away.

I'm rambling now, thanks so much for all that good info. I'm going to look up the videos/books now.

whollyfool

@H1235

Thanks for your comment.

Exactly. It's such a delicate balance, trying not to make him mad while protecting him.

He and I always argued and so I know he will not trust me (even though I "declared an amnesty" several years ago and just get along now).

I know if he gets mad it is Mom that will pay the price. :(

H1235

As far as being left in the home alone here are some things to consider. Does he know his limitations? Many with dementia don’t and would think nothing of going out to mow the lawn or fry some bacon while left alone. Can he still use his phone so he could call for help if needed? If the smoke alarm went off would he know to leave the house? If there was a fire what do you think he would he do? I have attached a staging tool. This give a rough age equivalent for each stage. I would use this to help as well. If he is early stage 5 for example that is roughly 12-8yr old. You said he acts normal during the day, but bad judgement might be hard to recognize. My mom wanted a toaster oven in her Al room. Staff said that was fine. After asking mom some questions and digging into it I discovered she wanted a full sized toaster oven (that wouldn’t have even fit on her counter) so she could bake cupcakes ( she is diabetic). Logic and reasoning are not there. It’s not always obvious.

I can completely understand your mom not wanting to bring things up at an appointment in front of your dad. I found the patient portal was a great way to communicate with moms doctor. She could also pass a note to the office staff to give to the doctor, explaining her concerns.

DBAT.pdf

harshedbuzz

@whollyfool

This is a form of shadowing which is a soul crushing behavior. In my dad, it manifested as dad's refusal to accept care from anyone but mom if she were there. Picture me fixing a sandwich and bringing it to him and being told "it's your mom's job to make my sandwich— take it back". (my reply "she did make it and she asked me to bring it, so you don't have to wait while she makes coffee"— sandwich accepted)

He also acted out by "needing" her attention when I visited calling for her. He even developed a vocal tic that started if mom and I were in the next room chatting— kind of an "uh-OH" which he'd utter every 20 seconds (yes, I timed it). What worked best was "visiting" with him first until he got bored and "dismissed" me.

If your dad is to a point where he needs to be supervised (for his safety by another adult), it's very likely his orientation to time is not reliable, so I wouldn't fret over his unhappiness over mom taking the time she needs to recharge her own batteries. Let him be mad; he'll get over it and if he doesn't, there are meds for that.

The best thing one can do for dad, is to do whatever it takes to care for his caregiver. And that means regular breaks to which she can look forward. She needs breaks to look after her own physical and emotional well-being. My mom didn't do this despite my urging. She's paid a terrible price missing regular medical care to manage her own chronic health conditions. Not long after dad died, she had her own medical crisis and lost the vision in one eye which means she can't drive and isn't living the stage 8 she imagined when she was deferring her own wants and needs.

There are a lot of ways to introduce caregivers or help out yourself. You can disguise it as a social call. Many who hire help disguise the helper as a friend-of-a-friend new to the area, a student nurse who needs clinical hours, a cleaner to help you, etc. There are also day programs which can be explained as "the senior club" or even them in volunteer position working with the elderly.

HB