Vascular dementia and rapid decline

[Anonymous]

My mom’s dementia seems to be moving faster. I moved her into independent living in April 2022 mostly for the social aspect and to have meals available. She didn’t really need much more than that at the time. I had to move her to assisted living in May 2023 because she was struggling and needed more help with medications and reminders- she declined that much in 13 months. Since then she’s lost almost all ability to do anything technical (unable to figure out how to work a TV-even with the dementia remotes, unable to work the thermostat, a radio, her electric door lock). She confided in me last week that she’s forgotten how to operate the shower. She’s having an increasingly difficult time swallowing and she is having a real struggle finding her words (she also suffers from primary progressive aphasia). Her memory is awful at this point and she needs reminders for everything.

Unfortunately she’s pretty aware of her limitations but I know she’s going to need memory care probably sooner than later-but it’s so incredibly hard since she does still have some awareness.

Has anyone gone through this type of decline? It’s happening faster than I expected and I’m not really sure how to help her at this point. My heart breaks for her.

[Anonymous]

My mom did this. She declined over about a year and a half after going from home to AL. She was declining physically and cognitively prior to leaving her home for AL, probably over about 5 years.
It’s awful becoming the parent to your parent.
Is your mom continent? Mine needed Depends prior to her move, but couldn’t handle it, was in denial, more demented than I realized.
The AL place could not keep their promises for increasing care needs (and the costs escalated), so I moved her to a private care home with excellent care, higher staff ratio. She passed a few months ago and suffered several strokes that left her unable to communicate.
Sorry going through this, OP.

[Anonymous]

This is OP- My mom is currently continent although I suspect a few well-hidden accidents. I’m sure that’s coming though.

I’m not thrilled with her highly rated AL place. It’s close to me and that’s about the best quality of the place. I still don’t know what we’re getting for “level 2” care and there’s no one case manager or anyone but the front desk concierge I can get answers from. She is safe there and fed and her basic needs are being met. I’m not adverse to moving her to a new place eventually, once she does need more services, because even memory care within the same facility necessitates a move.

Would you mind sharing the name of the care home where your mom lived? I’d love to look into better care. Her current AL seems to have well defined roles for the workers which generally means that any need is “not my responsibility”.

[Anonymous]

Op where are you looking - location in MD, VA, DC? You’ll want something convenient for you.

[Anonymous]

I'm sorry you are going through this, as is she. Yes, we saw that kind of rapid decline. I'm sorry to say it only gets worse, much worse.

[Anonymous]

Care home recs are Avalon or Vienna Manor. Avalon is around $7-8k/month, VM $10k. Staff ratio is about 1:4.

[Anonymous]

Thank you for the info, I’m in Virginia. No one prepares you for this. I feel like someone needs to write the equivalent book of What to Expect When You’re Expecting but for elderly family members with dementia.

[Anonymous]

Yes, it was hard to detect at first but kept building and then snowballed. I can’t tell if you have some guilt about AL or if that made it progress faster, but to allay your concerns, mom is home with me and it was the same pattern.

We’re at the point where she needs one on help help with bathing and bathroom so we’re further along, but looking back I think things were worse than I realized. It was my own blindness, Mom’s compensatory actions obscuring her condition, and just some refusal from both of us to see how bad it was getting. Hindsight being what it is, I would assume she needs more help than she’s getting and she probably needs to transition to a more hands on environment where aides will help her bathe, set her up for the day with entertainment and help her with tasks she’s not able to do anymore.

[Anonymous]

NP. How old is your mom, OP and PP? Mine is having the same issues and I’m so sad about it. She’s only 75 and I had been picturing spending another 10 years with her doing fun stuff like going to operas etc. Her progression is similar, she’s not in a care home, so I don’t think the home accelerated matters in OP’s mom’s case either.

[Anonymous]

I’m the OP and my mom is 82. She started showing very mild signs of forgetfulness when she was around 75 or so but we chalked it up to stress over losing my dad and a lifetime of anxiety. In retrospect that was about the very beginning.

[Anonymous]

PP here, mine is 78 but her vascular dementia is related to a lifetime of smoking. We can see now that it probably started in her late 60s, it became really noticeable by 73 and has sharply declined in the last 2-3 years.

[Anonymous]

Glad to live in Canada where I can choose medical aid in dying in the early stages and not hand over a lifetime of assets to the senior care industry. I don't have any "loved" ones i.e. daughters, to tend to me so can't just sit around ignoring the signs. You don't go from healthy to unable to reason or think overnight. You willingly avoid testing and you willingly ignore all the symptoms.

[Anonymous]

Anonymous wrote:Glad to live in Canada where I can choose medical aid in dying in the early stages and not hand over a lifetime of assets to the senior care industry. I don't have any "loved" ones i.e. daughters, to tend to me so can't just sit around ignoring the signs. You don't go from healthy to unable to reason or think overnight. You willingly avoid testing and you willingly ignore all the symptoms.

Part of the decline, oh ignorant one, is not understanding your condition or being able to do something about it. You won't be able to make those decisions. And I don't think you'd make a pre-emptive decision either!

[Anonymous]

May I ask, how was vascular dementia diagnosed? My 73 year old father has become increasingly hyper-anxious and rigid with his routines, which I suspect is a sign of memory loss. He's had an echocardiagraphy and ultrasound which showed atherosclerosis. I want him to get a brain MRI. His parents both had dementia, so I think he's going the same way.

[Anonymous]

The speech aphasia and other symptoms were diagnosed as they emerged, the vascular dementia diagnosis was confirmed by MRI.