Struggling as a caregiver mom with dementia

ttt

You’ve been given some very good advice. Get to a CELA first to get your legal and medical ducks in a row for her. I doubt your mother would be accepted at an AL location. That is for people who perhaps need a little reminder now and again, but are mostly capable of handling their ADLs. Your mother sounds like she needs to be in a Memory Care facility.

You should also probably start to scout out some potential MC facilities now. Often, there is a wait list for them and it sounds like your mom should be on that list.

Hang in there! I've had times when I was convinced I could not make it another day - even another hour - without screaming, running away, etc. These crazy periods are interspersed with times when life feels almost like it used to, although it seems these times are getting shorter. Learning to surf . . . .

If you hold power of attorney, then you make the living arrangements without discussion and just take her, period. There's a saying on these boards that safety drives the decision-making; she doesn't get a say, even though you are used to deferring to your parent. Your main issue may be cost of care, and yes, the attorney can help you qualify her for Medicaid. She may not need skilled nursing if she gets proper diet and medication administration. But it does sound like she needs memory care, not assisted living, and finding a facility that accepts Medicaid may be your biggest challenge.

I agree.

@Fleabug821

You said: "So can a memory care facility handle all stages of dementia"

The answer is more nuanced than that.

It is typical for MCFs to operate under a business model that balances the care needs of their resident pool by restricting new admissions to those who are early stage 6 or earlier and can still ambulate (some will allow a long-time wheelchair user who can get around independently) and self-feed to avoid having an entire population who needs assistance with everything. If you miss that window, a MCF will not be an option for your LO. I often remind people weighing the timing of placement that they're a broken hip away from losing that choice and having to place in a SNF at a much higher cost and likely without dementia-informed programming.

Dad's MCF admitted their facility limited the number of residents with FTD-behavior variant to one per hallway because of their higher need for staff engagement meant other residents might not get the attention they needed. Other facilities cherry-pick their residents for the pleasantly befuddled only and don't accept everyone who applies. My dad was turned down by one facility based on his alcohol-related dementia which has a reputation for difficult behaviors.

I was very open about dad's mixed dementia when I toured the dozen or so facilities in putting my Plan B together. None of them said outright that they wouldn't accept dad prior to interviewing him, but I suspect the cherry-pickers would have shown him the door after cashing the community entrance fee and first month's rent. It's always prudent to ask under which circumstances would a resident be asked to leave. The only place I visited where they not only took all comers but didn't flinch at a challenge was the state veterans' home which was an amazing place if you qualify and survive the waitlist.

As I mentioned in an earlier post, most MCFs will expect family to bring in additional aides when care needs increase. It's a good idea to ask what triggers that request. Sometimes hospice will satisfy this request.

My aunt was in MC for about 4 years before her guardian started to make sure my aunt had someone at lunch to make sure she ate; she had had a stroke which impacted one side and also had essential tremor which meant it took her much longer to eat and she often needed help with packaging. If guardian or other family couldn't be there, then the guardian hired someone to come in. Over time, aides were added to help with hygiene like toothbrushing which is typically verbally prompted or performed hand-over-hand when time allows. When the cost of aides on top of MC fees approached a SNF fee, the guardian moved her to get the higher level of care. The CCRC was very flexible and allowed my aunt to spend most of her day in the MC side with staff and residents she knew having meals and doing activities.

HB