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Beaglebabe Asked December 2020

Mom's vascular dementia is a roller coaster, one month she’s pretty with it, but then she’s really out of it. Anyone else have this issue?

Mom was finally diagnosed with vascular dementia. She moved to assisted living in 2016, back home to be with my dad, after he passed away she moved to IL facility #1... didn’t like it, moved to #2, didn’t like it, moved to IL #3. At #3 transitioned to assisted living due to issues I will describe below and then moved to memory care at same place. The issue is that she is miserable in memory care. She is at a weird place where she needs more than assisted living and doesn’t really fit memory care. She is also under hospice care for her reoccurring pneumonia as she doesn’t want to be “poked” anymore. Her dementia is very up and down, one month she’s sharp... the next she’s running around naked. She doesn’t really remember her episodes, nor will she acknowledge them and she will accuse you of lying. I was so very relieved when we finally got the dementia diagnosis as I feel that she has had issues for years that were masked by her pain pill addiction and people just excusing it as an “infection”. Yes, sometimes she had an infection; but many times she did not. I am grateful for her current facility, but am exhausted by her constant complaints about everything there. I’m 49 yo and honestly... she hasn’t been happy for the 49 years I’ve known her and I don’t expect her to be happy now LOL. I’m also exhausted by the constant battle with her not believing things that have happened in the past that lead to the decision to have her in memory care. We’ve been called to see her several times in the past year because they were convinced she was transitioning. She doesn’t remember any of that, although I think she is lying because she doesn’t want to talk about it. So, anyone else have these extreme ups and downs? Btw- yes they check for UTI and pneumonia each time too. Have even done cultures.

MJ1929 Mar 2021
Easy way to fix this -- Stop trying to convince a woman with dementia that she's done things she doesn't remember. There's literally no point in doing that.

When she's with it, great -- talk to her about things. When she isn't, fine -- talk to her about other things. In either case, talking to her about behavior she doesn't recall, or if she does, is terrifying to think about, isn't useful.

lealonnie1 Dec 2020
You're describing typical dementia behavior, really. My Aunt used to call 911 regularly yelling HELP ME until her daughter had to remove the phone from her room. She wasn't psychotic, she was demented.

There is no point in trying to convince your mother she belongs in Memory Care, which she obviously does. Once they get it in their heads they don't belong there, a chisel won't chop that idea out of there. Trust me, I know.....my 94 year old mother is the exact same way.

Ups and downs with lucidity come with the territory too. Medications are at the root of many behavioral changes and declines in cognizance. If your mother is medicated at all, chances are, dose changes affect her state of mind, like they do my mother. New medications are a huge crap shoot too.....beware and blame those first and foremost. My mother needs pain meds for nerve pain with neuropathy. Cymbalta made her dementia horrible but the neuropathy better, and now the pain meds have her insisting she lives with me and has a baby to take care of. So there's no good answer. Its always the lesser of the evils, unfortunately

The best place for both of our mother's is in Memory Care. They do belong there but they don't like it because they are chronic complainers and are unhappy EVERYWHERE. The grass is always greener on the other side...till they GET there. Then it's brown and dead. Which you've seen yourself with all the moves your mother has made and her various reasons why each place was No Good. What's different NOW? Nothing.

She's worsened, so the behavior has worsened along with the complaining, that's all.

I often say that vascular dementia exacerbates what the person used to be before disease sets in. My mother was always mean and complaining, a glass half empty kinda gal. Now she's just meanER and more complaining, and the glass is totally empty. Try to ignore the drama and focus on the fact that she's well cared for where she's at. Don't let her fool you into thinking she doesn't fit memory care, like my mother tries to convince me. Where ELSE do they belong, with dementia and running around naked, getting pneumonia (mine has had it 3x already) and everything else? Just because they're not catatonic doesn't mean they aren't Memory Care material!

Step back and let her be. Leave the staff to deal with it all, and keep your visits and phone calls as light, fluffy and short as possible! Let go of the impossible idea that it's your job to make her happy OR to be her 24/7 sounding board and scratching post. It isn't.

Good luck!
marcykong Mar 2021
That's where I'm at...trying to let go of the idea that I'm her happiness guru.

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Martz06 Dec 2020
I feel for you. My father was diagnosed with vascular dementia and he too has extreme good days and extreme bad days. My family still doesn’t believe it because they don’t live with him or see him everyday, sure he sounds normal on the phone when they call but they aren’t here when he starts accusing my husband of putting birds in the car, or tells us of rats attacking him at night. I just got off the phone with my aunt and she said he still has a very sharp mind, no dementia. So I guess my husband and I are lying about it and the Doctor is just making diagnosis up these days? It’s very frustrating, at least I don’t need their approval. I know what I see, and I have no reason to doubt the diagnosis even if he has good days. There are others on this forum too that say their loved ones with vascular dementia go to extreme as well. Best wishes to you

Beaglebabe Dec 2020
Thanks everyone. She is a unique and baffling case even to her nurse and hospice worker. She has a combination of psychotic issues woth the dementia. Today she attempted to call 911 to tell them she was being held against her will. We met with her MC and hospice nurse to change meds and hope that will help. I’m also not going to take her calls as often and will rely on MC to let me know of there are issues.

funkygrandma59 Dec 2020
My husband was diagnosed with vascular dementia in July of 2018, after having most of the physical symptoms that come with it first(incontinence, unsteady gait, falling a lot etc.) I was told by his neurologist that people with vascular dementia will show the physical signs first, before the mental ones, so that could be why your mom is thinking she doesn't belong in MC. My husband would eventually have moments where he was confused over things, but thankfully the mental decline with him didn't get as severe as it does with some before he died in Sept. of this year. I'm sure you already know, vascular dementia is the most aggressive of all the dementias, with a life expectancy now of only 5 years, so just try and enjoy whatever time you have left with your mom. Best wishes.

AnnReid Dec 2020
A diagnosis of dementia means that your mom’ s brain has been permanently, irreversibly damaged, and that in turn means that she cannot be expected to retain or use information as she did before her illness began.

Whether she has “good” days or “bad” days, it is very unlikely that she will understand anything you tell her about why she is where she needs to be. Trying to impress anything on her, then expecting g her to be able to recall or use what you have worked hard to impress upon her, can be a VERY frustrating and exhausting experience for both you and her.

Give yourself permission to stop trying.

My LO also was what we often referred to as “a 2 1/2”. That meant “not able to meet life demands even with help” and “can no longer form memories for any information”. After about 8 months in memory care, it became obvious to those of us who love her that she was functioning quite well there, and would not in any way be appropriate for life on the Assisted Living floor.

Your mother may sound as though she understands what you are saying to her, but if you listen VERY carefully you will ultimately find that there is next to NO connection between what you say and what she is actually answering you.

MOST residents of Memory Care OR Assisted Living units will tell you they don’t like where they are and/or don’t want to be there, but when you attempt to find a new living situation, they will say the same thing. If taken “home” they may be just as restless. As you have observed, she’s not miserable because she’s in MC, she’s miserable, and she happens to be in MC.

SOOOO- stop battling with her to convince her that what you’re saying is “true”. In her damaged brain, she is not understanding what you are saying is truth.

It is exhausting to you, and pointless to her, so stop doing it. She is not lying, whether she wants to talking about it or not.

If you are satisfied that you chose a safe, relatively pleasant place for her to live in, out of the love you feel for her, ignore her complaints, keep your conversations focused on light topics that she enjoys, and if the conversation gets to difficult, give yourself permission to tell her you love her, have to get to an appointment, then leave.

TOUGH to adjust to, but try this approach. Better for her, better for you.

Good luck.

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