An Introvert in Memory Care

Daisie

Hi! I know that personalities change with MD (I'm witness to it every day). But my mom is still basically very introverted. She's never been one to be very gregarious or outgoing and make a ton of friends (at least not that I've ever witnessed in my lifetime, anyway).

I'm wondering if any of you have any experience placing a LO like this into MC. I know everyone is different, but I'm wondering how they did/are doing. I'm probably thinking about all of this as someone in their right mind, but I'm curious. I mean, it won't stop me from placing my mom, but again, just curious.

Thank you!

harshedbuzz

My aunt was quite introverted. She lived at the end of a 16-mile long peninsula far from town in the middle of nowhere and liked that just fine. When she moved into MC, she blossomed and enjoyed the activities and outings and looked forward to them.

My dad had been the life of the party pre-dementia. Once placed, he immediately recognized that the other residents had dementia, but not his own. He wanted nothing to do with any of them nor any of the activities. He could be coaxed out for live music, but would scuttle back to room as soon as it was over.

@M1 may have some perspective on this.

HB

Daisie

https://alzconnected.org/discussion/comment/217825#Comment_217825

Thank you! One thing I do notice is that when my mom is around my friends these days, I can barely get a word in edgewise, which is not at all like her. But then, because she has no self-awareness anymore (though I often question how much she ever has had), she'll ask me if my friends complained that she's too quiet. And she'll say, "I had nothing to say to them," yet she was a Chatty Kathy! Even my friends have said without my prompting that my mom had a lot of interesting things to say.

M1

Daisie this has become a theme of sorts for me and think it's an excellent question to raise with the administrators. For background, my partner was an extremely bright, successful business woman who had a lot of different careers-teacher, college psychologist with a masters degree, landscaper, craft store owner, ultimately spent the last thirty years of her working life as a custom builder/contractor, known for taking on challenging ridgetop building sites and completing about sixty multimillion dollar homes. One of a kind, very few women with similar experiences, especially in her generation. Being unique is not an advantage when it comes to aging however. A perfectionist and introvert by nature, she was always a loner and a nonconformist, never suffered fools gladly, yet was one of the most successful people I ever met in working with all types of people, from the roughest fly by night construction guys to bank presidents. She used to tell me that you had to be able to tell them all to go to hell and make them look forward to the trip. All of her subs both feared and adored her, and she could get the best out of them. When her houses are up for sale now they still use her name to advertise them.

She has had an extremely hard time adapting to a group living situation. She always told me she'd rather be shot- and meant it. And yet the irony is that her extreme individualism made it more likely that i had to place her, as she would not willingly accept help from me, and certainly not from anyone besides me-and we all know that advanced dementia is not a solo enterprise. She was unwilling to accept outside help at home- very territorial and unable to realize that help was needed, and when she started not recognizing me and being combative, i really had no choice. Had she been more adaptive, i might have been able to keep her home longer- although home help was also very hard to come by in our rural area. Fortunately, she made good money in her building career and was conservative with it, so we could afford private memory care placement. That's a luxury not everyone has and i don't take it for granted, by a long shot.

But I have been very struck by how much memory care is geared towards extroverts. This really shouldn't have come as a surprise, as extroverts dominate the general population (50-75%) and certainly all business and school environments. Group meals and group activities, while convenient and really necessary for staff, are excruciating for an introvert (me included). The only group activity she might at all tolerate was the occasional musical concert- but only if concert format, not requiring interaction or singing along. At meals, there were no seating arrangements where she could sit by herself if she wanted to. Add to that the dynamics of having to socially deal with other impaired residents too, and it's been a very tough go for her. Even in late stage 6 I am very struck that she can easily distinguish who is staff and who isn't. This does not appear to be true for all residents but is exceptionally true for her; she has somehow retained the high level of emotional intelligence she's always had.

Anyway: it's been a slog and a steep learning curve to try to figure out what works. Her first year was uniformly awful. She was so unhappy and so anxious to leave that i could rarely visit, and never solo. This was a relatively small, corporate affiliated facility. During the first winter, it dawned on me that part of what she was reacting negatively to was the clautrophobic nature of the indoor spaces- there was no place other than her room where she could be alone, and all of the common areas were small and crowded. Not being clautrophobic, i hadn't taken that into account. There were other issues with the care there so after a year i undertook to move her. Her second place (which was always my first choice, but that's another story) is bigger, with more residents but also much more open space, interiorly and exteriorly, where she can roam when she feels like it without constantly being in a group, and she has been somewhat happier there and more accepting of my visits. She accepted the premise that she was there for extended therapy after a hospitalization.

Nonetheless it has taken extraordinary effort on my part to provide activity for her, since she has zero interest in group activities with other residents. There is a conservatory, where she and i could spend time with the plants, and a small aviary, where we could sit and just watch the birds. There are walking trails. There are picnic areas where we could share a private meal; for a while I was taking a picnic lunch every Sunday. When she was healthier, i took a lot if simple art projects that she and i could work on in her room. We painted bird houses and wall hangings, made a mosaic stepping stone for the garden, things like that. But all of these solo activities generally still require supervision and my initiation, which has generally meant that we do them when i am there to visit. Doing them at other times would require a one on one companion which at $37 an hour on top of the standard MC fee $10,000 per month in our case) quickly becomes prohibitive. When i am not there, she spends the vast majority of time in her room. Only once did I ever show up for a visit to fjnd her sitting out in the courtyard.

So no, memory care is not easy for a true introvert. At first we all had resisted putting a television in her room, since she cannot operate it independently, and the thought was that it would just make her isolate all the more. But now that her physical health is deteriorating too and she is spending more and more time in bed, we have put one in there. She will sometimes watch it a little bit with me, but she mostly sleeps through it. She can still get out of bed at this point and will unplug it if she wants to turn it off; she can't operate switches or the remote (I'm kind of amazed that she still knows to unp!ug it. She does this to her lamps too). I think the television just mainly gives me something to do now that my visits are mainly feeding her lunch and sitting by her side while she sleeps. Since her bad fall in early June she has rarely left her room, and she is allowed to take her meals there by herself. She vastly prefers this, although there are downsides- i found discarded French fries in her towel warmer this week, which she frequently mistakes for a trash can.

I continue to communicate with the staff about ways to accommodate introverts, but I don't know that we've been very successful overall. It sounds like your mother could go either way. I do think that being aware of introvert/extrovert dynamics is important though in trying to respect each resident's needs as much as possible. My partner is likely at an extreme of the spectrum, which has been especially challenging.

sorry this is so long, probably more information than you wanted, but it's something i do have strong feelings about.

psg712

M1, from a fellow extreme introvert, my heart goes out to you and your partner. It's very hard for those who truly care about including people in a group to understand that the need for time and space alone is NOT a rejection of others, but an inborn characteristic. And a PWD in a care facility cannot express this need in words. How difficult for both of you.

fmb

My mother is an introvert and has never really had more than one friend at a time. She moved into AL in September 2022. A disastrous dining room seating assignment at the outset placed her with some rather unpleasant ladies for many weeks. She agitated for a change in seating by going on a hunger strike, and was moved to a table with three other ladies and made friends with two of them. According to Mom, she and they were "the only ones in the whole place who still had all their marbles." (She was probably in stage 5 at the time.) She never did attend any of the activities, preferring to stay in her room watching TV or walking the halls for exercise. In January 2024, she voluntarily moved to MC. Now in late Stage 6/early 7, she refuses to come out of her room, even taking her meals there.

My DH is also an introvert. Noise disturbs him and always has. At the ALF where he has resided since November 2023, he has only one friendly acquaintance among the residents, a very soft-spoken, quiet man who does not have dementia and who stays in his room most of the time. On the other hand, up until his recent decline, he was very friendly with all the staff, from the housekeeping crew all the way up to the facility director. For the first 4 or 5 months he lived in the ALF, I dragged him to activities whenever I visited, even though he didn't really enjoy them. (I should not have done that.) Up until a month ago, he would consent to sitting in the common living room watching TV with a few other high-needs residents, but now he refuses to do even that. He eats in the special needs dining room with approx. six other residents and two aides and finds that to be too much at times. His entire world has shrunk to the dining room and his room just 20ft. down the hall. He doesn't even want the TV on, but will consent to listening to quiet music, which is mostly for me as I sit knitting beside his bed after lunch. When I am not there, he is left in the special dining room parked in front of the TV until the next meal. He was in Stage 6 when he entered the ALF and is now in mid-Stage 7.

As a noise-averse, claustrophobic introvert, living in DH's ALF would be my idea of hell. Kind of like high school with gray hair. (shudder) The staff shout at everyone in the mistaken belief that everyone there is hearing impaired. TVs are turned up sky high by the aides. There is no privacy other than in one's room, and if you don't want to listen to your neighbor's TV, you have to keep your door shut. The main dining room seating is arranged per the fire code with the correct configuration of wheelchairs and walkers, with no choice of tablemates. A $10 fee per meal is supposedly assessed to those who choose to eat in their rooms and are not ill. Activities are all geared toward groups, and those who choose not to participate in the organized activities are ignored by the activity staff. Even the musical events are at top volume. The small courtyard is inaccessible to those in Broda chairs. A resident and his boombox take over the front covered patio nearly every day.

Sorry for the rant, but like M1, I have very strong feelings about this. I've been fighting for my rights as an introvert all my life.

Daisie

https://alzconnected.org/discussion/comment/217849#Comment_217849

Wow! Thank you so much for the info! I speak as an introvert, too, and I know I would not like the dynamic of always being in a group or crowd. While social interaction is incredibly important, I don't believe it should be forced. When my mom gets placed, I do worry about her and a TV, of all things. She can't operate the one we have at home at all, and I know someone who works in an MC center. She said she spends a LOT of her evenings troubleshooting the residents' TVs, and she wishes their LOs wouldn't bring them in. But you can't expect an LO to just sit there in silence, either, especially if they are used to certain shows for comfort. It's something I will have to learn to navigate when we get there. I want to be able to visit, but I won't be able to all the time, either, for my own well-being, and I'm just worried about how all of this is going to work out. My mom is still somewhat high-functioning in a weird way, and I can't see her sitting there with people far worse off than she is, either. But I can't keep her at home and jeopardize my own emotional well-being, employment, and social life.

Daisie

https://alzconnected.org/discussion/comment/217864#Comment_217864

Me, too, so I hear you loud and clear! I fear my mom will completely shut down and decline quickly if I place her in MC as an introvert, but it's too hard on me at home. I know she won't accept respite care or anything in the house. I also know she won't go into daycare when I want to go out. We've had these conversations, and she's adamant that she "doesn't want to sit around with a bunch of sick old people." But because she has anosognosia, she doesn't realize how much I do and how much I can't do these days. When I'm stressed, she thinks I bring it on myself and that I am somehow weak (if she only knew). I've pretty much had to stop going out because when I'm gone more than an hour, it's like she forgets who I am, and she makes it difficult when I come back. All signs indicate it's time for MC, but doesn't make it any easier to decide!

M1

Daisie I'm really, really glad you asked this question. Helps to know there are others out there with similar feelings. Wish there were more obvious solutions. Maybe group home for introverts is an oxymoron. But it's a very real issue i think.

fmb

https://alzconnected.org/discussion/comment/217874#Comment_217874

I don't know why accommodations for introverts are not possible. After all, the broader community is beginning to recognize the necessity of accommodations for those with autism and other disorders by having low-sensory events. Contrary to some people's perceptions, introverts are not people-hating hermits. We enjoy and even need to be around other people, just in smaller, quieter doses. And when we become overstimulated or tired, we need to have a safe, quiet space where we can go to recharge our batteries. I don't think that is asking too much.

Anonymousjpl123

This is such a helpful dialogue.

I have often thought about how if it was my father with dementia, who I was actually much closer with, this would be so much harder. He was absolutely an introvert who relished work and physical activity. I’m more like my mom, very socially inclined, which has made this easier for both of us even though we never got along. My dad would have really struggled to accept help: of this I’m certain.

My mom’s current place might offer an unintentional solution, even though I’m having such trouble with them.

There is a very high staff ratio, but very few activities. People sort of find their way, occasionally clustering in groups. Activities seem almost non existent on weekends. Many people keep to themselves. I don’t think it’s healthy, but for introverts, maybe it’s better. It sucks that they advertise so much more engagement than is offered, but maybe for some the freedom from groups activities with high staffing is better.

Could there be a model with a lovely space, high care levels, and even group meals with activities for individuals? I think that might be a nice model.

mabelgirl

I find this thread interesting as a topic in general. Everything I’ve read encourages socialization for those with dementia, to keep the brain stimulated. It makes me wonder if an introvert would deteriorate faster. My mom was more of an extrovert than introvert but her keeping herself holed up in her room I do think is causing deterioration of her language skills. Then of course how is one to know what’s fast or not. It’s such a confounding disease.
At the ALF my mom will move to they tell me they won’t force her to do activities and if she just wants to stay in her room she can , although I am praying she won’t.

M1

I don’t think an introvert would look at it that way Mabel. As I understand it, the definition of introversion/extroversion is based on what restores one’s energy. Extroverts thrive on socialization. Introverts don’t- we all know how to socialize, because (again) that’s the behavior that’s expected; but for an introvert it’s draining and takes energy, and to recharge we’d rather be alone or perhaps with one other person. I suspect that whole “socialization prevents deterioration “ is just another unproven bias driven by the dominant extrovert mentality.

harshedbuzz

M1 said: "Maybe group home for introverts is an oxymoron. But it's a very real issue i think."

Many places I toured purported that a MCF with a home-like model was dementia-informed care. The resident's suite was meant as their bedroom for sleeping/resting and the rest of the time they were meant to be out doing things in communal areas.

That said, my house doesn't operate that way. We adore one another, but life here is more parallel-play.

fmb— that was a blisteringly accurate description of many, but not all, MCFs.

Another thing that irks me about some facilities is how little consideration is given to the roommate situation. In the spring, high school seniors are all busy filling out questionnaires to best match dorm roommates with options to tweak things as needed once on campus. In a semi-private bed room, the "open bed" is the only consideration.

Anonymous— your model sounds lovely but given the difficulty staffing such places and costs involved, the monthly fees at such a place would be astronomical. One option a few folks at dad's MCF employed was to bring in a private-hire aide to do activities with their LO. Often this aide had been one who helped the family when the PWD was still at home. One lady at dad's place had an aide come do hair and makeup daily. Another had one come do puzzles or play cards with their dad in his room. This isn't inexpensive, but great if you can afford it.

HB

Daisie

https://alzconnected.org/discussion/comment/218090#Comment_218090

My biggest worry is being forced to share a room. She's still a VERY private person, and I worry about being stuck in a room with someone she's not compatible with. Like I couldn't see her in a room with someone who was VERY high-need.