First visit at AL facility, eye opener

ErikaK

4We are in the mid-stage of dementia here probably though things are staring to change. Mobility still good but starting to lose interest in things, forgetting the bathroom routines, lots of little eating reminders. He hasn't know what state he lives in for quite a while and has no idea what day of the week it is, when he does it's a surprise. We've decided to start looking into assisted living, and I made an appointment with a group home management team in the area. What a gut punch, seeing hospital beds, I had to take a step back in my mind. I don't think he'd care about the bed to be honest. When he first came to us we put him in our guest room with a queen that he thought was too big, we found a double bed low to the ground for him which he seems to like but still curls up to one side. But he's still mobile for now, it's the fear of progression that has me thinking we should consider something sooner than be too late in this. I have the feeling I'm being selfish wanting to get back to my life and put him somewhere he'd be miserable with what he calls "old people".

M1

Hi Erika. There's a common saying here that by the time families start considering "assisted living," it's way past time for that environment and memory care may be more appropriate. You probably need to have a frank discussion with experienced assessors about what level of care he needs. The need for bathroom and meal cues makes me think he may be past AL. I understand your worries.

harshedbuzz

Hi Erika-

I agree with @M1, a hospitality-model assisted living is not an appropriate level of care for a PWD. Or are you using the term to describe a "high acuity AL for memory care" aka "memory care facility/MCF"? With hospital beds, I'm guessing the latter.

I toured a dozen places before placing dad; I have many options where I live. I would encourage you to tour several if that's possible where you are. I found the experience very like touring classrooms for my son with autism-- sometimes the appropriate setting had peers that seemed more impaired to my eyes than DS did through my own rose-tinted mommy-goggles. It's a gut-punch.

A quality facility that allows residents to age-in-place, a euphemism for "die there" will have residents who are at various stages of the disease. Be aware that the population at a MCF is constantly evolving as new residents join the community, others progress, families move LOs to places nearer them so that what you see is kind of a snapshot in time.

Dad's MCF gave families the option of moving their own furniture into the suite (one woman had a massive breakfront filled with collectibles) or using the facility's more institutional set up. We chose the latter; dad had a regular twin bed with an amazing mattress. A few folks who were receiving hospice services had hospital beds to make their care easier. Dad's MCF had 4 separate wings each with a mix of residents to balance the workload for staff, but at combined activities, efforts were made to match up residents with similar skill levels and interests. My aunt who was in a very nice MCF in another state, was quite personable well into the disease progression. When she initially went to MC, the staff often included her with activities and outings for the AL residents which was the best of both worlds.

HB

jspdude409

We placed my mother ( 89 YO ) in a memory care facility in May and despite being in a wheelchair with a broken arm she has tried to leave several times & we are now looking for
a locked facility. So many things to consider it’s painful seeing a loved one in these settings but I am forced to remind myself she needs the care & safety they offer.

ErikaK

Yeah unfortunately the "hospitality" style is not an option, my dad just has his social security income and what's in his bank account which at one of those places will last about 4 months. I looked at a group home setting, 7 beds. We have to get in where once his funds are gone he'll be able to apply for medicaid quickly. Until at least such point as he would qualify for hospice, the funds just aren't there. When he came to live with us he hadn't done anything regarding getting set up for medicare, he had back taxes that I helped him resolve, and had tons of bills. Now that is resolved and we don't charge him rent, we just get grocery/utility contribution from him monthly. Looking for a facility near me that will take medicaid ultimately is a big challenge.

jspdude409

I hired an attorney to help with the medicaid application. Medicaid allows for spend down of attorney fees so I figured having an attorney will be easier than applying on our own.

ErikaK

@jspdude409 good advice, our elder law attorney said he can do the same assuming we are still in NV when the time comes.