Hi everyone. I hope you all are going to enjoy some good times yet in this year.
Mom is in the Memory Nursing section of the Independent living community. She has been there for about 3 years now. Dad passed 4 years ago. She has been in her own room (it's a room with a small sofa bed and bedroom furniture but her own place). She has had the level of dementia where she would watch a movie but not remember what it was minutes later. She has been in good spirits through all this but short-term memory has been bad.
About two weeks ago she had an accident in bed. First one. I just learned that since then she now goes most nights and is now having these accidents during the day. They went into her room and she was sitting naked from the waist down. When I talked to her she said she didn't know if she took a shower or not. She says frequently that she has been gone for a year and finally back from hospice. She's very upset that her mother has not come to see her in hospice. The nurse also told me that she is talking about her parents a lot lately.
I mentioned to the nurse that I sense a significant decline in the last week. I just don't know if that is even possible with Dementia. She mentioned that she is not a doctor but she is seeing it as well.
Someone had Covid so now Mom is isolated in her room for two weeks. We can not see her at all. It's heartbreaking.
Can anyone tell me if they experienced these almost "overnight" changes?
Thank you for any input here.
Be and stay well all
Marie
Wear a mask. Wash your hands. Avoid large groups. Practice social distancing. We'd all like to see our parents, but here we are----and here THEY are---isolated due to Covid-19 and losing their minds.
When I joined the forum and read so many comments saying TEST TEST TEST, I was skeptical. When mom had her first UTI (she was notorious for UTIs prior to the move) in MC, she was out of control every afternoon/early evening! Meek, mild, sit-in-a-chair reading paper, magazines, sales flyers mom was fit to be tied, said she had guests coming, had to get out, had to go home, set off every door alarm multiple times! Of course it was Friday night when they called, so we had to wait until Monday morning to see the doc (tried calling, redirected to nurse at hospital, who basically blew me off!) By then we needed antibiotics and mild dose of anti-anxiety until it cleared.
The second UTI showed up as night time bed-wetting. She wasn't incontinent at that time, but often she couldn't get undressed fast enough to make it to the toilet! Her clothes, carpet, etc. I could envision them finding mom naked from the waist down, just for that reason, not incontinence. However, with the second UTI, she'd soak herself and the bed at night. Once treated, all was good again!
NOTE!!
Another person had posted a question and later let me know that HER mother's problem was due to an infection in her mouth, which they did catch. Once treated, mom was back to her normal self! So, it won't necessarily be just a UTI, it could be another infection elsewhere. Blood work might show indication of infection, if the UTI is negative, so consider that too. Definitely ensure everything is checked.
That said, often you do see step-downs in cognition or behavior. We never had the various tests done, there really was no point, as they can't treat dementia (some forms should be identified, as medications can be counter-productive.) Anyway, assumption is mom had vascular dementia. She was on BP meds for as long as I can remember. Even with meds her BP was higher than I cared for, but docs accepted it. Perhaps she had TIAs, we've no way to know.
She was fairly stable and consistent for the first 9 months in MC, then out of the blue she asked about her previous home, not the condo she harped on YB about those 9 months! That home was sold over 25 years ago. At the same time, she became fixated on calling or going to see her mother, who has been gone over 40 years. She also associated her mother with that home. Sometime last year, questions about her younger sister (all are gone, mom was the last man standing, or rather sitting... in a wheelchair) and statements she made clearly put her in that 40 year way back machine!
So, mom made the step down, but remained there for over 3 years, more or less. She was mobile on moving in, and it was 2+ years before she resorted to using a rollator. About a year ago, she refused to stand or walk without help, so she ended up in a wheelchair (mostly her fault for not getting some "exercise", aka WALKING some instead of sitting all the time - staff tried to engage her in activities for this, but she refused! Use it or Lose it!)
It's hard to say if she went back further, as we weren't allowed to visit up close after mid-March. Her hearing and eyesight were not good, so the 2 scheduled visits (one outside, one in a cafe upstairs) were not very good - it isn't clear she knew that I was there, given the 6' spacing and required masks. Discussion with a staff member, when dropping off supplies, indicated she still knew who I was (Oh, her and all those CATS!) and that she was also sad when shown a picture taken of me that I didn't come in to visit. Makes me wish I broke the rules, took the mask off and came closer so she might hear a bit or lip read - I never got the chance to make that close visit. She'd had a stroke early Sept, but was "holding her own", despite it having an impact physically, but given the description from the nurse, it sounds like she had another Dec 15, which was the downfall. Never got a chance to break the rules in time.
We have cameras in room we can view and communicate daily with her...usually when she not giving them a challenge we know something is wrong... but we all love the old lady...and its her turn for TLC and the home understand we are doing what's best for our Mom. If they had their way if she said no I don't want to get up and eat, shower, or change clothes go to bathroom...they would let it happen. But as we have said she is not dead yet...and til then you will take care of her...neglect is a big thing to watch for with this memory care unit...but we battle with them to just do the job...and they act like its her time to kick the bucket.
Hospice is in charge of that time and we just enjoy the highs and lows of mom days. And I never tire of the stories over and over. Good luck its difficult and different for all loved ones.
I would have the nurse check her urine for a UTI. I give my Mom a supplement daily called D-Mannose mixed in juice as it helps prevents UTIs.
Wishing you and your Mom the best,
Jenna
I even highlighted this episode in a book I wrote called "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." As the disease progressed, my mom also had the biological issues that you mentioned. The observation that things can change on a dime are right on "Target."
Perhaps when you buy your bra, your observers will give you a round of applause.
Your being able to see the humor amidst the difficulties must be a big help in retaining your sanity!!!
Even without UTI, stroke, etc., my mom's Alzheimer's disease did not have anything gradual. She would go on for years at one level then SUDDENLY get a big change. I took her to the Emergency Room and they did EVERY test and it was related to her Alzheimer's disease--because all the tests came back negative. Then that drop becomes the new level for a long time...then another drop in decline.. I also noticed these drops in function happened more frequently as her disease progressed.
Now hospitalization can cause delirium for people with Alzheimer's disease due to the change of routine and excessive stimulation (people, noise, bells, announcements, etc.) They can stay awake for days --- that causes permanent damage. They never do recover from that. Hospitalization of someone with Alzheimer's disease is a risky thing, and their chances of falling are very high. https://www.medpagetoday.org/neurology/alzheimersdisease/33361?vpass=1
Then she had a cornea tear and was on an anti-biotic for 6 months to save the eye. The decline was frightening, as soon as they took her off that she started to come right back. Some parts of her brain had changed a bit but she returned for the most part and doing well in early stages again.
Just yesterday she scratched her eye and back to the antibiotics, but now I know and will ask for her to be taken off of them as soon as possible!
so infections and stressful events here in Florida, both improving!
cause extreme and sudden confusion. In my 98 yo Mom’s case, she’s had
7 UTI’s in the last 10 months. It’s easy to blame it on dementia but if you can identify that it’s a UTI, you can at least treat the infection and not make the dementia worse. The infection effects the brain.
I took Mom out of assisted living and she lives in an apartment down the hall from me with full time care now. I automatically take her urine to the lab when I see a change in behavior.
The assisted living wasn’t good at following up and said they were too busy with covid.....wrong answer.
As time goes on... they cannot remember you (a daughter), they thank you for calling and enjoy talking to you. I just get off the phone and cry. It is almost as if we would be better if we were freed from this.
Im so sorry about your mother. Is there a special song you could play her, something special between you two?
Dementia in general is a decline. Sometimes, like with Alzheimer's, the decline is like walking down a ramp. Slow and steady, a gradual decline. Vascular dementia is like putting a landing then stairs at places on the ramp. You have a steady decline then all of a sudden there is what can be a drastic decline. (I am not familiar with other forms of dementia but most are in general steady declines)
I/my Husband experienced at least 8 or 9 of these drastic changes. One day he could or would do something literally the next day he could not.
The vascular dementia is caused by little mini strokes that will damage a part of the brain. It is possible that your mom is having some of these mini strokes and that is why she is having some of these overnight changes.
Sad to say it is all part of the disease there is nothing that can be done to prevent it.
If this is what is happening there is a possibility that your mom could have a stroke that will take her life rapidly rather than the slow, decline of Alzheimer's.
The only way to verify the mini strokes would be to have a scan done and I don't think it would be worth putting her through that. If it was something that could be changed or cured that would be different.
((hugs))
Also, sometimes a person has experienced a small stroke - not enough to show up on a brain scan, but enough to impair their thinking or behavior.
Our ability to remain continent of urine and/or feces is dependent on the ability of the brain to send the appropriate "signals" to the bladder or bowel. If the part of the brain that controls these functions is affected, then incontinence can result.
I pray that it is easily treatable and if it is her time, I pray that she has an easy passing.
It could mean that she's had a stroke, or, as is always said here, a UTI. Barring a UTI which is easily checked for, it could be that she had a stroke which happened with my mother but we didn't know it at the time. We found out the following year when she was hospitalized and a CT Scan and MRI were done. Not that there would have been any treatment undertaken for the stroke had we known about it.............but it did happen and it did contribute to her decline in mental cognitive ability.
As far as 'accidents' go, I assume you mean urinary incontinence? One day, my mother was fine, going to the toilet on her own, etc. The next day, we were riding in the elevator at her AL, and she said Oh I Have to Pee. Next thing we knew, she did, all over herself and the carpeted floor of the elevator. From that moment on, she started wearing Depends, day and night. So yeah, it happened overnight the change from being fully continent to being incontinent. She wets the bed (at night) at her ALF now several times a week.
Steps down, or declines, with dementia are to be expected. There are 7 stages of dementia, and here is a link which is helpful:
https://www.dementiacarecentral.com/aboutdementia/facts/stages/
Speaking of deceased loved ones is common too. My mother seems to dream of her mother quite often. At first, I thought maybe it was a sign that she was getting ready to pass away herself (which is sometimes common). But, since this has now been going on for a few years, that's not the case.
It's also common for dementia patients to remove their clothing, or actually defecate on the floor sometimes, thinking it's the toilet. When I worked in a Memory Care AL before the plague hit, I'd often find a resident with his or her pants off wandering the hall. Sometimes they'd leave a pile on the carpet, too, and I'd have to call a care giver. One time an old gal was pooping on the upholstered chair in the hallway, happy as can be, with a big smile on her face!
All bets are off with dementia. It's a sad and unfortunate progression they're on, our mothers, and it's hard for US to witness. I'll vouch for that myself. If your mother is basically happy, though, and in a pretty good mood, that's all that really counts, you know?
Wishing you the best of luck with a most difficult situation, and wishing your mother PEACE as she proceeds on her journey
That said, I've found that my own mother's decline hasn't been all that gradual by instead seems to go in significant steps downward, then she levels out at the new normal before taking another step down. These are usually connected to significant shocks to her system, whether health-related or emotional. She took a big dive (her first) when she had a major health issue back in 2014. She had another hospitalization in 2017 and a subsequent decline, then she went down again when my dad died a year after that. Now she's been fighting an infection in her leg since September, and she's taken a deep dive yet again.
Rule out the UTI first, but she may need to be moved to a higher level of care.