Anyone go back to earlier stage?

WhatNow?

My mom has been slowly progressing through this disease and we have been trying to keep track of her behaviors and moods so we can keep tabs on where we think we are and where we think we are going next.  Well probably about  3+ weeks ago I would have said she was a late stage 5/early stage 6.  We started noticing more episodes of jumbled words where we couldn't understand what she was trying to communicate (most of the time we could understand her), she was having a harder time being in a room by herself,  harder time following directions or figuring out how to move to get around something, like a dog in the floor.  We also noticed that she had an accident, number 2, that she tried to clean up herself, but put it all in the bathroom trash vs. taking it out to the outside container (I'll take it).  First time that had happened that we had noticed. 

Because of the jumbled word episodes we did check with her primary dr back in December/January and we did blood test, tested for a UTI, and also just did a CT on her head to make sure everything was ok there.  It all came back negative.

Well she ended up needing to go to urgent care because she needed stitches, long story, and while there she got an IV of antibiotics and also a prescription for antibiotics for 10 days.  

She also got her second shot of the Covid vaccine in late February.

Well pretty much since a week after the Urgent care visit,  I feel like she has reverted to at least an early stage 5.  She doesn't seem to shadow us as much, she seems to be recalling things a little better (not that she really has short term memory) but she's recalling that my sister and I exchange her on Wednesdays, even if she doesn't understand how the exchange happens even though we have been doing it for over a year now and other small things.  And since the weather has started to get better and we have taken walks, she is actually walking by my side and passed me to lead the way the other day.  WTH! Ha!  Last summer/fall she would be completely behind me, not really try to talk while walking, and I had to slow my pace A LOT so I didn't kill her.

I guess she possibly could of had something her primary didn't catch, and the antibiotics from urgent care possibly cleared up, but really just trying to find a cause and effect.  Or possibly the fact that the weather is getting better and days longer.  

Has anyone else experienced a length of time, 3+ more weeks, where your LO seem to be "better" for length of time?  I just wasn't expecting that.  Maybe a couple of good days, then a couple of bad, but not seeming to go back a whole stage.  ....not complaining at all. Ha.

LaurenB

I've noticed that a lot of caregivers on here comment how their LO's fluctuate between two different levels or straddle the lines.  It's possible that the increased hydration and exercise have allowed your LO to function better, but dementia is caused by brain damage and there is no reversing that.

mommyandme (m&m)

You’ve read my mind.  I’m going through that right now with my mother.  In fact, I started hospice services last week on Tuesday. Not because she was close to dying but because she had declined significantly over the last few months.  Thinking late stage 6 or 7 by that time.  She was fainting daily for a month or so and we started oxygen beginning of this month. She hadn’t known I was her daughter for sure and didn’t recognize my brother over zoom. 

Now she’s basically back to her baseline from 8 mos ago.  Not fainting, eating again, conversing better, mobility is better, awake more.  I’m so happy and amazed. I did stop two of her medications because they were meaningless.  Not sure if that’s helped at all.  If she had a UTI it cleared up by itself. She understands she’s had two of the shots everyone needs.  She understands more than she did. 

I wonder if this is normal too.  Is it a rally of sorts?  I cannot say “same thing different day”, ever with this disease but jeesh, this is very different.  I often say, “ one step forward two steps back” but this does equate to “two steps forward, one step back.”  I completely understand there’s no reversal and I’ll take today as it is, just like I took yesterday and I’ll take tomorrow for what they are too.

Same...I’m not complaining!

aod326

I had also been thinking of posting something similar. My DH has had a fairly fast progression of his EO dementia, and it's sometimes been difficult to guess what stage he's at. At the end of January I brought him home from MC where he'd been for 5 months. Basically the reasons he needed MC - aggression, wandering, needing a lot of socialization - are no longer there, so I decided I'd be happier having him home, even if he didn't notice.  The first two weeks he was home he declined further; while he was still eating and drinking, it was a very slow process and he would often forget to swallow. He went from being able to "stand and pivot" from bed to chair, to not being able to stand at all; he wasn't communicating at all, except for twice when he said my name. He got a lot of skin breakdown, literally overnight. I started my 8-week family leave, pretty sure that I wouldn't even need to take the full 8 weeks.

But for the last 2 weeks he's been on an upswing. He seems to understand what I'm saying some of the time, he's answered questions - yes or no answers, but appropriate responses - he's eating at a normal pace, albeit that he still hasn't made any attempt to feed himself. His face is much more animated. I wouldn't say he's gone back a whole stage, but definitely from the end of Stage 7 back to the beginning. 

The Hospice Nurse said this could be an end of life rally, but it seems to be going on a long time for a rally? I know there is never going to be a recovery from dementia, and honestly I find this quite exhausting. It's lovely to see him smile when he sees me, move around in his bed, rather than just lay pretty motionless, etc., and I've always said you just have to take what each day brings. Strangely, though, this has made me feel pretty down the last couple of days. 

I guess it's just another stop on the dementia journey.

mrl

Oh those lovely smiles,,,take some pictures. My DH passed 7 months ago and I look at

them daily, but the ones with the smiles make my heart leap!! I wish I had taken

some in the earlier stages..

Michele

harshedbuzz

It can happen.

Many PWD improve with treatment of underlying infections like UTIs or pneumonia. 

Sometimes a PWD, who has lived alone or was neglected, will improve upon placement in a MCF with dementia-informed care, routine, improved nutrition and social engagement. 

Jeri Layer

It seems that every day is different for my mom lately.  Yesterday I could barely understand a word she said and she struggled with every single thing she tried to do.  Last night while sitting with her before bed time, she was expressing herself very clearly.  She was putting rollers in her hair after her shower, thanking me for all the time we spent together that day.  She does seem better on days where there are activities and we get her out of the house.  Though it is getting harder to take her places and engage her in simple activities, I am going to try to keep it up as it is beneficial - even if it doesn't seem so until the end of the day.  I'm hopeful that I can keep a positive attitude and some hope by reading your stories and sharing the journey,   I deserately need connection to others who understand what this is like.

Kath50

My mom has days that are “normal.” She is still hard to live with. But it is less stressful and takes me back in time.  Sadly though, something comes up and she is confused again. Enjoy the good moments!

Kathy Joh

I was actually going to post something about this. A few months back my mom starting in October seemed to be in decline. She started having incontinence problems, was not eating much, and wasn't talking at all. This went on for about 6 weeks and then she started bouncing back. The incontinence is still there but she's eating better and talking a little bit more.  Recently (the past couple of weeks) she's been more agitated than normal but nothing really extreme. 

I have begun to wonder if some of this is related to seasonal changes. I know it does not impact everyone the same, but I do wonder if some of these changes have something to do with going from days with less daylight to days with more.