Much Worse in Last Two Weeks

Kerry8958

First post. My father died 21 months ago, and my mother was unable to care for herself due to declining health. She wanted to go to an assisted living facility, as she didn’t expect me to be able to take her in and meet her needs. This was and is true. Things started out rocky, as she would call me all times of the day/night to come and do minor things, like change the temp on her HVAC, find a hearing aid she lost, take her to the emergency room for constipation (after only one day), etc. I finally had a sit down talk with her that I wasn’t available 24/7, and she should only call between 8am-7pm unless it was an emergency. Also, anything minor should be done by the staff. That’s what you pay them for. I found out that my dad had catered to her for several years before he passed. She had open heart surgery several years ago, and basically he did everything for them both after that. Her father, sister, and two 1st cousins died of ALZ, so I was always on the lookout for symptoms. She has been on a slow steady decline since she has been in the ALF, but the last two weeks have shown a SHARP decline. Her PCP is having blood/urine tests done now to see if it is something else going on, but she’s gone from annoying me with minor things to simply unable to communicate and process things. I have gone from being frustrated with her to feeling sorry for her. I was feeling guilty about not taking her calls in the middle of the night, but now she has forgotten her phone password. That locks her phone, but she can take calls in. Honestly, it was a blessing in disguise. Sorry for the novel, but I wanted to give a picture of what I am up against. So what I am wondering is if others have seen similar things happen, i.e. slow decline with a sharp drop off into really bad mental incapabilities?

harshedbuzz

@Kerry8958

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

What you are describing is very common. It is not unusual for a spouse to provide a level of scaffolding for a PWD that masks just how impaired they actually are. It's also very likely that the hospitalization and anesthesia around her open-hear procedure hastened the progression of her dementia which is why your dad was forced to do everything— mom probably couldn't.

It could be that your mom has a silent UTI causing this sudden drop in her baseline function. If so, she may be back to her annoyances with treatment. But it could also be that you are seeing disease progression. You don't mention how she was diagnosed, but sometimes PWD actually have both Alzheimer's and vascular dementia. VD tends to progress in a series of plateaus followed by sudden, sharp declines in function. That may be what you are seeing.

Dad had mixed dementia. His was diagnosed as Alz and WKS (an alcohol-related dementia) but I'm certain there was some vascular disease in the mix given his CAD and imaging. I would say his dementia progressed slowly at first. He was in mild dementia for about 8 years, then in moderate for about 2 1/2 (this is when he was finally diagnosed). He died within 16 months of diagnosis after about 14 months in stage 6 and 2 in stage 7.

HB

H1235

Welcome. In the past when I thought of dementia I alway thought of memory loss. It is so much more. The constant calls for little things, that’s dementia. Her brain is not working well enough to realize you are busy and that Al can help with these things. Logic, empathy, reasoning can all be effected. The common saying here is never try to reason with a person with dementia. It just doesn’t work! I agree with hb a uti can be a common reason for sudden decline as well as vascular dementia. You are so lucky that she wanted to go to AL. I don’t hear that very often. For most it’s a very difficult transition. I hope you can figure out what is going happening.

Kerry8958

https://alzconnected.org/discussion/comment/248145#Comment_248145

Thanks for the insights.

I agree that the UTI may be causing some/all of this, and they are doing a workup now. She has not been formally diagnosed yet, as NP testing a couple of months ago had her just under the line to do ALZ testing. If the UTI comes back negative, I'm sure the NP/PCP will have formal testing done.

Kerry8958

Thx H1235,

I am thankful that she realized she should go to an ALF. I think with the number of people in her family with ALZ, she had seen how hard it was on the family, as they all stayed home way too long before being forced to go to a facility.