Suspected dementia: need advice

pnw23

Hello! Brand new to this. Please know I'm grateful for your help.

-Relocated 93 YO Mom (and elderly dog) from Florida house to indep. living near me in WA, Jan 2023. Very indep. woman; very stressful for her.
-Since then, I've noticed STM loss and taken over bills. Also big changes: she has stopped her voracious reading; no interest in email or texting but still uses phone; forgets if she took meds; sometimes wears the same clothes and needs a shower/hair comb nudge. Yet: still quick, funny and mostly following her years old routines. Thinks she's fine but says "I don't remember" to a lot of questions, in a light-hearted way.
-Recent checkup concluded: memory loss and balance disorder; CT ordered.
-A few days after check up, she apparently fell and lost control of her bowels/bladder. She appeared to have got up, changed pants and resumed TV watching w/o injury. When asked, doesn't remember why she fell and wasn't bothered.
-The next day she was pos for COVID; was on Paxlovid and neg within a week; with some lingering fatigue.
-Weekish later, CT scan revealed "severe small vessel ischemic disease" (SVD) but since Mom's BP and overall health is good, Dr. said there's not much to do. Suspecting dementia and trying to set my expectations (should I hire someone to help w/meds, etc.) I pressed Dr. She said SVD is assoc with dementia but not specific to type. When pressed further she suggested testing via neurology.
-In addition, since the fall/COVID, Mom is sleeping late--missing the exercise class she went to with great regularity. She is a good sleeper--no waking up in the middle of the night, doesn't take meds that affect sleep. But now she is just getting up and sitting in front of the TV, maybe some toast or a load of laundry. Not taking initiative to learn about events in the building, classes. Also, she has stopped walking the dog, which she did religiously.

My questions:
-Is it worth taking her to the neurologist that will tell her something she doesn't want to hear and won't believe?
-Is a diagnosis required to activate any home health aid coverage she might have?
-Does Medicare cover anything like home health aid (I'll call them)
-Is this a watch and wait? Should I hire someone to help with evening eye drops to make sure they're taken?
-Could any of this be long COVID?

Bit about me: I live solo, am in between work and the youngest of 3 adult kids but the only one with the capacity to help Mom the way she deserves to be helped. It's very, very hard--as you all know. Thank you sooo very much for your insight.

JDancer

Welcome. I'm sorry you have to be here, but this forum is very helpful.

I'd suggest an appointment to rule out correctable problems- check for infections, vitamin levels in bloodwork, etc. Brain masses would already be ruled out with CT, I assume. Get some baseline testing of function. Good luck in your journey.

Emily 123

I think the covid will knock her for a loop. If it has, at 93 it will take a while for her to get her strength back. My mom (94), who's early/mid stage 5, was definitely pushed forward a bit when she had it in August, and it's taken her a few months to rebound. So it could be that the covid exacerbated some underlying MCI or early dementia. Your mom is still trying to manage. She can still do the laundry and remember when to eat, but the toast may be a sign that it's all she can manage to make, or alternatively, maybe the covid has affected her sense of smell and taste and that's all she wants. Can you spend a weekend with her and see how her day goes? Is she safe? What guardrails does she need? (Pet walker, pill reminder, aide?) She may be assuming that she's doing her usual routine, like walking the dog and taking her meds because she always has, when in reality she can't remember what she's left undone that day.

Understanding the Dementia Experience: https://www.smashwords.com/books/view/210580

At this point, you could get her set up for the testing, but since it's not going to be something she wants to hear or believe, you can do what some of us have done--say it's for new Medicare requirements and just keep any diagnosis to yourself. It's a scary diagnosis, and there's no cure--no need to make her face up to it if she's unable to.

A diagnosis will be helpful if she does have dementia that eventually causes her to lack the capacity to make sound, safe decisions about her care and finances. It'll allow her POA to step in to act in her best interests. Getting her affairs in order doesn't have to be framed in the context of dementia, either--you can tell her that now that she's closer to you, you would really feel better having some guidance and know what her wishes are in case something happens to her.

A certified elder law attorney (CELA) is probably the easiest way to get a lot of the legal and financials done. https://www.naela.org/Web/Shared_Content/Directories/Find-a-Lawyer.aspx

I can't speak to Medicare, but I think you have to be fairly far along with the dementia to be eligible for more coverage than what one usually has--others here will know. You can do a thread search here and I'm sure something will pop up.

M1

Welcome to the forum. At 94, i would not take her to a neurologist, i doubt that there is any intervention that could help her. Her primary physician should be able to rule out other treatable issues.

She very likely needs a higher level of care-assisted living at a minimum, and perhaps memory care. Medicare only covers very short-term home health aid after hospitalizations. The dog is likely to be an issue.

Covid can certainly contribute to worsening of dementia, but like the neurologist it's probably a moot point. Tough to have to make these changes at such an advanced age. Glad you got her moved when you did.

Marta

Agree with M1 that a more specific diagnosis isn’t helpful at this stage. The way you present her, she likely is, or will be, a candidate for memory care.

Have you determined whether she has long term care insurance? If not, you need to see a certified elder care attorney ASAP to get her qualified for Medicaid (Medicare does not cover memory care).

Can she move in with you until you work out a long-term plan?it sounds as if she should not be living alone (not eating, falls, likely unable to respond to emergency given the way she reacted to the fall).

pnw23

Thanks everyone! Wow. Great insight--thank you! ❤️ I have been looking for exactly this type of support and will pay it forward.

-Estate/POAs, etc. are in place.

-She does have LTC and I'm exploring what that will cover as well as a helper to come in when I can't (positioning it as they are helping me more than her).

-Moving in with me is not an option at this time. She is in a solid indie living community and they check on you if you don't push the button in the morning. And you can add on AL services if needed, it's just $$$.

-I talk to her daily and am over there about 4 x / week so pretty in tune w/her daily goings on. From what I can tell from staging videos (TY Emily 123), she may be straddling somewhere in 3 or 4-5.

-Nothing else going on per the GP this month but will note UTI, etc.. Next would be neurologist--will think on this.

-Exploring some health aid assitance via her church.

TY so much.