Another question about progression

Belle60 · June 24

My DH's agitation and aggressive type behavior seemed to have subsided a lot. He actually got in the shower willing the other day and did not fight it. He has been much more agreeable. He has been on Serequel since December so I can't say it is the medication. The neurologist mentioned that when the behaviors stop that can sometimes mean he progressing. He does seem more confused and constantly asks me "where we going?" This change is throwing me for a loop wondering what am I missing. Anyone else experienced this? It almost seems like he is getting better…I know that is not true and I feel like I am waiting for the other shoe to drop.

Ed's mom · June 24

My LO has messed up so many things while I have been sick for two weeks. Choosing when to totally face reality isn't an option isn't an option anymore, it's clear to me the future and I have to start action plans. It was terrible to watch play out, messing up banking, then trying to fix it over chat on her phone. She finally went in person. Forgetting about my service dog, a Great Dane. How can you forget the 175# looking at you has to eat? The list goes on and on for two weeks, constantly observing while being so sick I didn't intervene helped me face it all in a big piece instead of a list. I really saw and understood her limitations and illness in a more total picture separate, just observe.

Today I made a list and know all the things I need to do, and do them! The constant feeling you describe of the other shoe dropping, sometimes I wonder what's left, yet I do know it's only going to get worse. Please affect her by making her be nice and peaceful, for both of us. Preparing for that next shoe.

Timmyd · June 25

One thing I picked up a long the way is that progression does not always mean things get harder. Some things can get easier with progression. Bathing DW has been really hard for about a year or so, but I noticed the last couple of times it got a bit easier. At the same time, as one thing seems to get easier, other things seem to get harder. Today's problems do not seem to last, but they are just replaced by tomorrow's problems.

marier · June 26

I agree with Timmyd somethings get easier and some things get harder. Progression of the disease I believe takes many different forms.

Karen711 · June 26

Hi Belle60-

I agree with others things shift as the disease progresses. There used to be a lot of discussion here over taking medications: why, what for, no I won’t take it. Timing was everything. Even put crushed pills in ice cream. Now it’s 95% a non issue. I’ve even added new meds into the mix with very little push back. But the trade off here is her remembering HOW to take the pills now. Often I have to cue her to actually put them in her mouth, and remind her to swallow water to wash them down. Sometimes I have to physically show her how by taking my own pills in front of her. And yes, showering is getting easier. The next frontier will be wearing some sort of disposable panties, already wholly rejected so far. Also, her angry agitation has softened and subsided somewhat. But I give “better living through chemistry” the credit for that one.
Trade offs….

Snipe · June 26

I can’t figure it all out yet either. DW took a shower yesterday afternoon on her own. I was very shocked. Also took her morning meds I put out no problem. This morning we were back to “put a pill in your mouth, swallow it with water “ routine. We haven’t had to go with disposals yet but I have gone to the washable panties for leaks. No push back on those yet.

Belle60 · June 27

Thanks everyone. We were out yesterday and I noticed his walk has slowed down quite a bit. And I have to watch him swallow his pills or he will pocket them in his mouth. He seems to be talking less except in the evenings—when I am trying to watch my shows! Progression of this disease doesn't seem to be linear and we just have to be prepared for anything.

blacksparky · June 27

https://alzconnected.org/discussion/comment/276050#Comment_276050

What you have described regarding the pills is exactly what my DW did. My DW has had several seizures and through each one the DR put her on Keppra to avoid future seizures. I thought we had the right dosage as she hadn’t had a seizure for over 9 months, then another one came. Long story short I would hand her medication to take each day and watched her put them into her mouth, but I guess she was pocketing them. I found out when I was attempting to unclog our bathroom sink. When I took the piping off under the sink there was a ton of pills just sitting there. I now have to watch her swallow the pills and open her mouth to make sure.

persevere · June 28

My wife basically just chews her pills now. She has no idea.

Belle60 · July 1

https://alzconnected.org/discussion/comment/276104#Comment_276104

If I don't say to him "swallow your pill" and watch him he will sometimes chew it. I can't imagine it tastes good.

pmiles1124 · July 1

Reading all the comments has been an eye opening. I have been through all of it, taking meds, showers and most of all I liked preparing for the next shoe. Let me tell my DH showered without me (yeah), taking his meds,hooray! Otherwise, my DH has been sleeping more than usual. Normal ? Or Not?

I really need a support group. I posted yesterday and did not get a response.

God Bless You All and Your Loved One.

persevere · July 2

https://alzconnected.org/discussion/comment/276297#Comment_276297

a lot of times I’ll put the pill in food. She doesn’t seem to mind. I guess I could crush it but I don’t think it matters

Belle60 · July 2

https://alzconnected.org/discussion/comment/276345#Comment_276345

I think sleeping more is expected with this disease. But it could be different for each person with dementia. Some nights my DH wants to go to bed at 630 and other nights he will keep getting up to sort his socks. I have to keep telling him to get in bed and go to sleep.

ronda b · July 2

My Dh went for a couple of weeks of only sleeping about 8 hrs a night. Now he is back to about 10 and taking a nap through the day. He was going to bed about 8pm now he is back to about 5 no later than 6. You never know with this disease what is normal. I just go with the flow.

Dio · July 3

Symptoms and behavior come and go at will. No warning sign. Nothing. Even the medical community can only guess. Nothing is for sure until the end, and even at that it's different for everyone. Lucky are those who have found the right meds to mediate these behaviors.

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