Admittedly, we’re not at the “put mom in a home” stage. But we are getting pressure from the retirement community staff to ramp up the home services and our plan to “fix mom” isn’t working particularly well.
To recap: Mom and Dad moved to a continuing-care retirement community in January. It was known that Dad has dementia issues, though not with a formal diagnosis of a specific type of dementia and he doesn’t have the characteristics of Alzheimer’s per se, but Mom was judged to be reasonably capable of managing her affairs, though even throughout the process of the discussions and decision-making it became clear that she had issues, too. Because it was a newly-added building, there were units available right away rather than having to sit on a wait list for a couple years, and boom, now they’ve moved. They set Dad up with some services right away (a memory-care program, thrice-weekly shower aides), added periodic housekeeping, and then a couple weeks ago added some physical therapy. At our last visit at the end of March, we finally got Mom in to see the doctor, where, in addition to seeing Mom deny having any health problems (and seemingly not in a “none of your business” sort of way but a true lack of comprehension), we saw her struggle with the cognitive screening test (the doctor didn’t give us a score, but it was clear that she was impaired, and suggested that she may have had a stroke/series of mini-strokes).
So the doctor asked for a follow-up visit in 3 weeks’ time, after also doing a blood draw, and suggested that down the road an MRI might be called for. And we — that is, my husband and I — tried to figure out what we could do in the meantime, after a weekend which also included following a to-do list prescribed by the Social Worker: get them a new mattress because the old one was stinky, get them a large trash can with deodorizing trash bags to use as a bathroom hamper for wet things, as well as looking through mail, checking old voice mail, etc. We put together a set of instructions on How To Check Voicemail and put it in a prominent place.
Then, upon returning home, I put together an excel file that I intended to function as something like a daily planner. I figured trying to accustom Mom and Dad to getting used to a daily schedule would be the first step to getting them to accept people putting things on their schedule and also enabling us to monitor them. And on the living/dining room wall in a reasonably visible spot is a metal furnace-filter access panel door where things could be taped. So I created a schedule for the rest of the month, added to it the activities I knew about that made sense for her to do (from the activity booklet) plus the trash and recycling days, mailed it, and let my lives-in-the-area sister know it was on its way and asked her to keep an eye out for it the next time she checked in on them, and help them fill it out and post it.
It was a bust. Sis wasn’t there until Monday, and then Mom said that she hadn’t checked her mail in a while. We have also determined that our efforts to get Mom to check her voice mail by writing out instructions have gone nowhere (though, as a small bright spot, she is making a greater effort to pick up the phone rather than letting a call go to voicemail), and worried that our efforts to get her to sort out the junk mail into recycling and put the rest into a small bin intimidated her and resulted in her choosing not to get her mail so she could avoid having to deal with it. Then later in the week when I called again to ask about the schedule, she told me that “Dad was going to take care of it.” I was flabbergasted. She knows that Dad can’t do this sort of thing since his fall four years ago — or, at least, she used to know it.And now we got the e-mail from the Social Worker that we’re running out of time — they want to add a daily aide, morning and night, to be sure they’re properly groomed in the morning and have picked up their wet things at night. Small tasks, but it’ll really add up if their fee is set with an hour minimum each visit.
So we’re trying to formulate a new plan, part of which includes getting Mom one of those grabbers to response to physical inability to bend down to pick things up and part of which involves getting mom evaluated by someone on staff as to in what degree she has physical limitations. And we’ll go there late next week and add in some meetings with the staff for ourselves. But near as I can tell, we need to either get them to agree to a lot more support (which in addition to the financial cost, Mom has rejected because she just can’t process that there’s anything problematic about her daily routines, or lack thereof, in the first place) or get them to agree to follow new routines, and then actually do it: things like taking regular showers, taking medication reliably, picking up things off the floor, using Depends, following a daily checklist, taking a shuttle bus to the store, etc.
The crazy thing is that each of them has different sorts of impairments, which when layered together, either make everything worse or — and here’s my slim reed of hope — might offer the possibility of crafting some solution. Dad would be able to comprehend that changes are required and might be able to engage with us in a conversation about it, but wouldn’t be able to follow through. Mom should (we think) still have the ability to follow a checklist, especially with very frequent check-ins, but wouldn’t grasp its importance. (And all of this involves cajoling Sis to stop by consistently to verify that they’re staying on track.)
But this is so much a best-case scenario. I’ve tried to get her to take the shuttle to the nearby supermarket and instead they drive back home to their familiar (and mom-and-pop small-sized) grocery store (it’s a bit over a half-hour drive but she doesn’t get lost because it’s a long drive on a single familiar road ’til she’s back in the old neighborhood). Is she afraid of taking the shuttle? Afraid of having to learn the layout of a new grocery store? Or does she just not recognize that there’s anything wrong with what she’s doing (she’s got all day, after all) or is she not really aware that she has gone from truly needing something at the not-yet-cleared-out house and picking up a few groceries, too, to coming up with an excuse to go to the house so she can rationalize going to the old store?
So in conclusion I’d like to give a big middle finger to everyone whose portrait of old folks with dementia left me completely unprepared for this situation.
Thus endeth the rant.
Image: still not my actual mother. https://www.maxpixel.net/Grandma-Old-Aged-Grandmother-Woman-Face-Glasses-1386802