some updates - meds, guardianship, new behavioral patterns

pookabera

Hi everyone, hope the holidays were smooth and enjoyable for everyone. I attended my family's Thanksgiving without my Mom which was strange.

I really, really like our hospice nurse and the entire staff. Through all of this experience they've been the most supportive and like... comprehensively attentive out of all the different people we've been in contact with. His actual hospice nurse is good too, he's been visiting once a week or once every two weeks and is very flexible to accommodate my dad's overall poor disposition toward people visiting him. And is good with my mom and I too - he said we're on pins and needles about my dad and how he's going to react to something, which is true! That's how it's always been - his mood always dictated the mood in the house, it's just more intense now, I guess. I'm working on not letting his mood swings affect me as much.

So, meds: at first we were only able to give him one dose of seroquel because of his sleep patterns, the one dose has helped stabilize his sleep and increase his appetite. So, great improvements in my mom being able to sleep at night! Not sure about how I feel about his increased appetite since I don't want all of this to be prolonged. I know that's not really how this works, but the whiplash I'm getting from him not eating for three full days and now eating snacks and small meals consistently throughout the day...

So anyway, the seroquel has been helping. However... he's been very angry/agitated about me being here this week. Now I stay in the kitchen and don't walk into the living room so he doesn't know I'm here.

He's also started using extremely derogatory language about my husband and I, presumably to express his agitation that I'm here and I understand he has dementia but the racial slurs are jarring. The last time he knew I was here and was saying that sort of stuff I went into his room and told him I could hear what he was saying and that it wasn't nice.

The agitation was rough this week, so we're getting him back on 2 seroquel a day. My concerns about him taking his medication have been mostly non-issues, the one seroquel/day has helped with all of that as well. The seroquels are teeny-tiny pills though, so my mom has to really watch to make sure it makes it into his mouth.

My mom had her guardianship hearing this morning (via Zoom) - it was granted! Which is a big ol' checkmark and I can put on my endless to-do list.

Anyway, things are semi-stable or as stable as they can be.

M1

That's all pretty good news. I bet the increased dose of seroquel will help....

pookabera

https://alzconnected.org/discussion/comment/190107#Comment_190107

The seroquel seems to help him sleep more deeply which helps with having a more consistent sleep schedule. Would really love if it helps more with overall agitation because the things he says are truly heinous :-)

I know that's more of a comfort thing for me and my mom, but he's obviously agitated and we can't always help.

I'm also really trying to look on the bright side when I can, but I'm afraid he's going to just drag on.

MN Chickadee

I would talk to the prescribing physician. Sometimes a tweak in dosage or trying a different but similar drug can do wonders to fine tune behavioral issues. Also check for UTI for any new behaviors or outbursts. It must be deeply upsetting to hear unkind words from him about your spouse. However even the nicest, most accepting people can come to say awful things when dementia affects the brain. It can go beyond "unfiltered" and tread into sentiments, attitudes and beliefs that didn't ever exist in them before. The wires get crossed it so many ways with this disease. I hope you can find the right meds and dose to tame his anxiety about you being there. I would also approach it as you might a child. Bring treats and presents when you do interact with him. Do what you can to make bring a smile, in some ways he may retain those feelings and attitudes even if he doesn't remember in the typical sense.

pookabera

https://alzconnected.org/discussion/comment/190347#Comment_190347

Oo, I'll check for a UTI, thank you for the reminder! I usually check every once in a while, just in case since his behaviors/moods tend to be unpredictable.

The derogatory stuff is hard when it hits me the wrong way, but I do try to remind myself that it's really connected to him being upset about something and this is how his brain is able to express it.