Very Fast Decline?

JennD724

New here! My mom (74) was starting to show signs of dementia, but somewhat independent (living in a condo). We moved her to an independent living apartment in a senior living community, thinking she'd benefit from some friends and activities (because she didn't have either) and had some in-home caregivers helping with some tasks. She didn't adapt - for two months, she got worse and worse, unable to put clothes on properly, unable to eat meals properly, wandering around and getting lost, going to other peoples apartments to use the bathroom, and a couple times locked herself outside in the cold. It's been a pretty drastic decline. Now, they have told us she needs memory care, but they have a wait list in their facility up to maybe a year to a year and a half.

So my sister and I are on the hunt for another memory care facility that can take her. In the meantime, she's living with me, so she can be safe. This is the hardest thing...harder than having toddlers. And I am struggling. She needs direction from me on every single thing she does, and gets anxious (she suffers with anxiety/used to have major depression), if she doesn't know where I am. She won't do any activities, won't watch any tv shows, says everything is boring, and basically I'm tasked with keeping her busy/entertained the entire time she's awake. Haven't had time to shower, can't leave her alone, etc.

I know that's a lot of up front info...all to ask, has anyone else seen such a sharp decline so quickly? In a matter of months, she is a different person. We've had her brain MRI (no stroke or other indication), we've done UTI tests (she had one earlier in October, but it cleared up). Was it the move to the new apartment, from her old apartment, that shook her world so much, that it caused the dementia to worsen to such a degree? And now, another change - she's with me. And soon, another change - she'll be in memory care. I feel helpless.

If you made it this far, thank you. 

ninalu

Hi JennD,
Welcome to the forum! I'm very sorry to read about your mother's quick decline. 

The first question that popped into my mind when reading your post is whether your mother may be experiencing nutritional deficiencies? My own mother went through this. Within a very short timeframe she became incoherent and deeply confused and it turned out to be largely the result of nutritional deficiencies in vitamin B12, Folate, and Thiamine. Labwork (blood) detected the deficiencies and a physician clinical exam supported it. After supplementation (both IV and oral tablets), she was dramatically improved. She had to be supported nutritionally in the hospital for a week or so - this helped a lot. For my mom, it seems that an underlying dementia was contributing to her inability to nourish herself properly. 

There are a number of potential causes behind rapid cognitive decline - nutritional deficiency is just one. Others will know more.

I'm glad you found us and wishing you a speedy answer that helps.

*Ollie*

Hi Jenn,

When we moved my mom into our home, I was shocked by her confusion, the ease with which she would get turned around in our small home, and her inability to learn how to use simple appliances like a basic microwave.   She had been living alone in the same place for many years. I think the familiarity of it had made her seem more "with it" than she was.   I can only imagine how confused she would have been had we moved her into an assisted living facility.   Like you, I imagine my mom must want/need social interaction and engaging activities but she is not interested in anything except watching tv, at least independently.   Though she'll do things with us (go on errands, etc) the invitation has to come from us.   Whatever ability it is that makes people reach out and make plans is gone for her.  

We are also finding the care of her harder than caring for a toddler for many reasons and at some point will move her into memory care which has its own challenges.    I don't have any tips for you but I want you to know you are not alone and I truly feel your pain.  I am right there with you!

prov1kenobi

Last summer, I realized that my brother’s memory was slipping. We had arranged to meet for dinner at a great restaurant/bar. He called me a few times to confirm where we were going to eat. So we went to the restaurant and waited for him for 1/2 hr. So I called him and found out that he had gone to the wrong place. So he drove over to where we had agreed to eat, and had dinner. 

About a week later, my brother was put into the local hospital to treat a covid infection. Three days later he was discharged from the hospital cured of covid. while in there, he went crazy…he have the hospital staff a run for their money….bad food, bad care, stupid nurses, uncomfortable beds….etc. Well, he was diagnosed by the doctors in there that he had some form of dimentia. So, in a weeks’ time he went from driving his truck to geing diagnosed with dementia. Upom seeing a neuroloist shortly after, his keys were taken away. That is when my wife and I moved in to be his caretakers. As of today, it has been roughly 13 weeks since his initial diagnosis of having dementia. He has gone from being able to drive ( stage 1-2 ) to being not capable of driving a vehicle.it has been a horrible change for him and for the rest of our family. 

We are still seeing changes daily

harshedbuzz

Jenn-

Sometimes the kind of rapid decline is a function of vascular dementia which tends to progress in a series of more dramatic steps and plateaus compared to Alzheimer's which tends to be more gradual in nature. 

That said, one thing friends of mine who were local to a parent with dementia experienced was a shock when they moved a parent in with them. They seem to be lulled into a sense that their LO was doing better than they actually were because they weren't with them 24/7. Sometimes a PWD can showtime for a short visit and often they are less impacted during the times of day when you might see them. One friend in particular believed she was being proactive moving her mom in earlier rather than later-- she already spent several hours a day with her mom (at the friend's house) so she thought she had a realistic sense of how mom was doing. She was very upset by mom's behavior overnight and also by the condition of mom's place when she got it ready to sell. The shower was dusty, there was rotted food in the fridge, dishtowels and a couple saucepans were scorched and jewelry was squirreled away in strange places.

HB

MN Chickadee

Yes taking a PWD out of their familiar surroundings can decrease their cognitive function, but that doesn't make it the wrong decision. Families often discover just how far along their loved one is when they move them to a new apartment or take them on vacation or even try to bring them over for Christmas dinner. Being in a new place can really send them in a tailspin. The issue here is she is not in the right level of care. If she is that lost in a new setting she probably wasn't safe alone in a condo either.  Often there is more going on there than we see unless we stay with them 24/7; she was probably able to present as functional for short periods but that doesn't mean she was well off there. I found that after my mother adjusted to memory care her functioning increased once she was in the level of care she required. She ended up being even happier and had more quality of life than she did trying to survive in the "real world" at home. The extra structures and supports of memory care allowed her to use her existing brain power in better ways instead of constant anxiety and struggling with the demands of daily life. MC really lives in routine, think Groundhogs Day every day, and once a PWD settles in and adjusts they thrive on that routine. The adjustment period can be long so don't get discouraged if she isn't content right away. It took my mom at least 8 weeks to fully adjust, and the first month was painfully exhausting and sad. But with time it became clear it was just what she needed. Hang in there.

JennD724

Thanks so much, for this, and all other replies. This was so incredibly helpful for me to read. I just think all of this rings so true. I will hold out hope we can find her the right place, and try to continue to have patience while she stays with me. I'm so glad to have this forum and support. Thank you!

AConcernedSon

Just to add in here--this week I listened to a very interesting podcast episode that said mixed dementia can accelerate decline: https://www.adrc.wisc.edu/dementia-matters I personally hadn't heard that before. 

Also, I'm a firm believe that cardiovascular exercise particularly outdoors can slow decline and reduce symptoms. There have been studies, but this is my own experience with a LO who has dementia. Zero exercise before AD, began walking compulsively in memory care and .....oddly decline seems to have almost plateaued. Again just a personal experience. 

LindaPond

My Mom has a similar story. Living independently in a retirement home after leaving her apartment where she lived alone for 25 years. One month after she moved in, the home had a Covid outbreak. My mom was found on the bathroom floor, is a state of delirium. She was rushed to the hospital, and found to be positive for Covid. No fever, small cough. But her brain never recovered. Overnight she went from normal to full on dementia. Rushing to find Long Term Care for her. Did your mom get tested for Covid when she first got sick?

Ci2Ci

Same. Right there with y'all, too. I moved my mother to my home 1.5 years ago, with me 24/7 caregiver. At the time, she seemed to have MCI or mild dementia, as baseline; but recurring UTIs (silent except for the altered mental status) complicate the eval. When I got her, she had a confirmed UTI, which was not treated with appropriate antibiotics and led to sepsis. She recovered from that with little mental change. 

Because of adopting my healthy lifestyle and diet (plantbased, low sodium, made-from-scratch meals), her medical profile made a big improvement. Her 87 year-olds labs read like that of a healthy 30 year old. But, the brain decline has been very rapid, in these past 2 months. 

She is 3 weeks in hospital now (geriatric psych) because of "altered mental status" -- a sudden & dramatic change. No indication on those 'stellar' labs to indicate delirium, in their opinion. The attending psychiatrist saying advanced dementia. [2 weeks prior, after more comprehensive dementia evaluation, dementia neurologist diagnosed moderate-to-severe dementia, most likely DLB.]

I have the same question as you.