Did I draw the short straw...

persevere · December 13

I have really enjoyed being part of this forum. I get a lot of good information and it's great to share experiences. One thing I notice though is that many of you mention 'watching tv' or 'listening to music' or just in general interacting with your LOs in ways that I can't relate to anymore. And you say they are in the very late stages. In my case, the DW wakes up with her mouth moving just making sounds and grunts and never stops unless she naps or finally goes to sleep. She is also in constant motion when she's awake so I get a lot of excercise making sure she's not breaking anything or tripping over something. Her voice has a quiver to it so it always sounds like she's worried or distressed. But if I pause her long enough to say 'are you alright' she says yes. I can't get her to look at the tv unless I physically turn her head towards it and even then it quickly turns back. It is literally like a nat in your ear all day long. I know that sounds terrible and I still love her dearly but it's the truth. So couple that with all the other things we do like feeding, bathing, toileting. And too, I'm thankful that she's not belligerent or violent. But, did I draw the short straw on this whole aphasia and constant motion thing or are you all experiencing this? And yes, she's on serequol, et.al.

ronda b · December 13

Is she on some kind of anxiety medication or calming medicine? Is the dr. Aware of this? If not they should be.

persevere · December 13

yes, she is on lexapro and serequol and sometimes lorazepam which I haven’t been too keen on. I speak to the hospice nurse about it. They wanted to put her on Valium but I don’t want to go there. This might sound weird but I have spoken to chtgpt extensively about this. The meds won’t necessarily make her sit still and be quiet. They are meant to calm her and make her feel less anxious. And the quiver in the voice is not indicative of distress. It’s just her brain doesn’t know how to sit and relax. I dunno. That’s why I wanted to reach out and see if anyone is seeing similar things.

persevere · December 13

See my response

Maru · December 13

https://alzconnected.org/discussion/74820/did-i-draw-the-short-straw

Just guessing that she is in a later stage. Maybe she needs a different or an additional medication for calming. As to how to take care of that "gnat in your ear", have you considered wearing ear buds and listening to music or a book so that you are less conscious of her constant noises?

wose · December 13

I feel like this too. As soon as I wake up the badgering and insults come flying. This morning he didn’t even see my face and started in through my locked bathroom door. I cry as soon as I wake up every single day cause I know what’s coming. My poor arm is so bruised. Yes he too is on medication. He wants to be out and about all the time and I’m just exhausted. I hate to say it too, but I wish I had the kind, gentle, demure version of this dreaded disease. I would give anything to be able to watch tv or listen to music in peace. I’m sorry I have no advice. I’m with you in spirit. I will be forever grateful for everyone on this site, there simply is no one else I can turn to.

PlentyQuiet · December 13

DH is in late stages (hospice) and on all the meds too. Yet I am on constant alert when he is up because everything goes in if mouth, edible or not. The wandering and moving, tearing, opening, and breaking of objects means active monitoring.

TV, and music for more than a brief minute, (highest was 10 minutes) does not hold his attention. I'm tired, and worn out. Respite will be happening in the near future, but until then this situation is very much an energy drain

CindyBum · December 13

Oh, I'm right there with you, persevere. My DW is in constant motion too and constantly "talks". She manages actual words still, but together they mostly no damn sense. She also demands that I sit with her to "talk" where she tells me negative things about me. Figures those are the sentences she gets together. Lol. Some days I do better than others with all of that, but I can feel my well emptying. Medications haven't seemed to help with any of this, though I shudder to think what she'd be like without them.

My DW has also started doing the reaching up and beyond gesture and talking about dying. I think it's time for a hospice check. I honestly feel like she won't make it through the year, even though she has none of the hallmarks of stage 7. Of course, who knows and who knows how much of that is me praying for a quicker, less painful end for her.

I'm so sorry this is the straw you got. Hang in there!

persevere · 1:28AM

https://alzconnected.org/discussion/comment/260645#Comment_260645

I do have AirPods. And I do use them at times. But I can only use them to help drown it out in noise cancellation mode. I can’t enjoy listening to music or anything while she’s doing her thing.

Victoriaredux · 3:38AM

"They wanted to put her on Valium but I don’t want to go there. This might sound weird but I have spoken to chtgpt extensively about this."

I can't see why lowering her anxiety level, and maybe with the added side benefit of being easier to be around for you isn't worth a try .

"chtgpt" is just a clump of searches , there is no human brain that weighs the options .

Can you explore starting at a very low dose ? And if she needs to come off it ask for a gentle tapering?

Did I draw the short straw...

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