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Denial of MCI - how does spouse/caregiver cope?
Caregivers: Dementia | Last Active: Sep 11, 2023 | Replies (20)Comment receiving replies
I lived with my wife at home for a little over two years during which time (mostly at the beginning of this period), she proclaimed that she couldn't do these things anymore: drive, cook, pay bills, enter income and payments in a checkbook, and her hygiene became worse, where she wore the same clothes every day, didn't shower, brushed her teeth very quickly, and slept a lot of the day. She didn't talk much when awake, and often I just talked to myself with her sitting nearby. She was very anxious when I had a volunteer meeting away from home, and this led to me staying at home all the time. I eventually decided to place her into a memory care facility at the beginning of this July, and that decision wasn't difficult, but I felt a lot of guilt about it. She never received a diagnosis of MCI or of AD. Her psychiatrist was a little baffled, because she didn't want to talk about her condition or do much to treat it, but I think she has a combination of MCI and depression. She remembers our conversations and activities in which I'm involved, but doesn't like to (or can't) talk about what she's doing, activities in her facility, hasn't really engaged with anyone besides her roommate, etc. I often nod off when I visit, because there's little to talk about, but she enjoys my presence, and doesn't mind this. It's really a shame, because she was a vibrant, energetic person who took pride in her appearance, had a lot of friends, enjoyed cooking, reading, exercise, and travel. I put her on a waitlist for a nicer facility, because I think they might attempt to work with her more, the food would be better, and she'd be more closely matched with a roommate who was at about the same level of decline, but she doesn't seem to care -- when I told her I did this, she just said, "uh-huh," which is becoming a standard response to a lot of things I say. I'm in a men's support group and their mantra is that you have to take care of yourself first, and I'm finding that to be true. Best wishes and know that you are not alone.
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When your wife’s name comes up on the wait list at the other facility, take your time to look carefully at the present and possible new situation.
Compatibility with a roommate is so important- their general mood, protectiveness about “their side” and “their way of doing things within the room”, the sound level their TV is placed at and frequency of it being turned on- there are lots of people for whom it’s on all day (we called it “audible wallpaper”) and loud. Other residents in the same hallway also have a big impact.
Hoping that staff in the other place will provide “more” is also not a given. It all depends on who is working on that particular shift, how many call-offs have occurred, what unexpected something has happened down the hall and requires extra staff time. Promises made by the other facility’s administrators have to be taken with a grain of salt. Every place has problems with staff turnover and shift coverage. This is a profession of primarily young women and kids get sick, the babysitter cancels, the car won’t start, etc.
Food quality is important, but take a close look at what your wife actually eats and how much. My husband also sleeps a lot and eats very little, old “favorites” hold no interest. He likes ice cream, so he gets a lot of that, with his PCP’s approval.
Finally, before planning a move, when you visit- look closely at the interactions between your wife and staff members. Does she make eye contact, maybe smile, when the Med nurse comes or the laundry lady comes in or an aide passes by and greets her? Does there seem to be a caring approach by the staff even if no response on her part? Is there anything special going on that she likes? My husband likes the musical things the Recreation Dept puts on but participates in nothing else. The facility allows one of the nurses to bring her very well-behaved small dog during her shift- he loves watching it play (as do many others who come out if their rooms to watch and laugh). It’s also important to consider that her room layout, the facility layout, the smells, the routine, the people are all now familiar, and a total change may be difficult to accommodate.
I guess what I’m trying to suggest is to look carefully at the whole picture in a “holistic” way ( a big buzz word, isn’t it?😊)