What Living In a Memory Care Facility Looks Like

A day in the life of dementia sufferers

So you’re getting older, or your parents are getting older, and you’re starting to hear phrases like “aging in place,” “assisted living,” and “memory care.”

“Aging in place” is what everyone thinks they’re going to be able to do when they get old, because they plan on being able-minded and able-bodied until wham, one day they have a nice fatal little heart attack and die at home. “Assisted living” usually means a nice little apartment where you can pay people to make your meals and do your laundry for you (and you’ll still get to exit from there with a nice little heart attack, when you’re ready).

And “Memory Care”? Well, even when it’s the nicest possible Memory Care, meant to care for people with debilitating dementia who cannot care for themselves, Memory Care is the place nobody wants to go.

My mother has now lived in a Memory Care facility for a year, so I can tell you a little bit about what it looks like to visit someone in such a place.

Basically, visiting my mom in the nursing home doesn’t look anything like I thought it would. If I can, I’d like to spare you some of the surprises and the huge learning curve I’ve faced (and continue to face).

At this point I should say that there are many more types of cognitive decline in elderly people than I had previously known about. There is the one everyone knows — Alzheimer’s disease — and then there are many other lesser known types, including Lewy body dementia, Frontotemporal dementia, and Vascular dementia.

The consensus of my mother’s doctors is that she is suffering from vascular dementia. She also has macular degeneration and is nearly blind.

To make a very long story short, my siblings and I (my dad died a few years before my mom’s first stroke) tried for several years to help Mom “age in place.” We prayed that she, like Dad, would be able to die in her own home.

Eventually it became clear that even with five of us covering 24 hours a day, we still couldn’t keep Mom safe in her own home and she needed more help. The next step was Memory Care.

Mom is in a Memory Care home that is very close to all of her kids. One of us goes to see her every day. We try to stay for a couple of hours and help her go to the dining room or whatever activities are on offer.

She is in the best facility we could find, and we have no complaints with the level of her care. Sometimes, however, there’s nothing anyone who works there can do to make it a truly pleasant place.

Let’s first talk about the facility itself.

The facility houses 32 residents in their own individual rooms, and is dedicated solely to Memory Care.

Memory Care facilities have alarmed doors, because the residents often try to walk out of the place. When you visit, you have to ring a doorbell and wait to be admitted. The same goes for when you leave. You ring the bell and wait for anyone who works there to come and let you out.

Once you’re inside, the atmosphere can vary a lot from day to day. Sometimes it smells like urine or something worse, and there is really nothing the caregivers can do about that, even when they are conscientious about cleaning it up. They are helping more than 30 people, most of whom are struggling with urinary and bowel incontinence.

One thing I did not expect about the Memory Care facility is how able-bodied most of the patients are. Previously, when I had visited friends or relatives in more straightforwad nursing homes, I had mostly sat by their bedsides and chatted a bit, or held their hands while they rested in beds.

Not so in Memory Care.

Many people in Memory Care are not, strictly speaking, elderly. They just have a diagnosis of Alzheimer’s or one of the other types of dementia, and those diseases can strike before people get truly old. As a result, many people who appear totally physically fine are walking around the facility at all times. They may no longer have language skills or know who anyone is, but they’re still able to pace around, and they DO. It can be unnerving.

My Mom is one of the pacers. Every day, she walks. She walks and walks and walks and (so the caregivers tell us) asks for her children every single minute. We could go visit for several hours, and put on her radio for her in her room when we leave, thinking she will rest in her armchair for a while, but a lot of times she gets up and follows us before we can even find someone to let us out the door.

It’s so hard to know she does that. I know we all have some degree of feeling like we failed our mom, sticking her in the nursing home when she can still walk around.

Residents in Memory Care often have their own rooms, but many people cannot remember where their rooms are, or remember to take their keys with them if they lock their door.

It is easier for workers in the facility to have everyone out of their rooms and together, especially at mealtimes in the dining room. Getting people together and involved in art, exercise, and music programs is also considered a mode of treatment, whereby the staff hope to keep residents more engaged and less depressed.

As a result, much of life in Memory Care is spent living in public.

People who have dementia have cognitive challenges, but their emotions and pre-dementia preferences are still very much in play. My mother, although she still has a healthy appetite, is often very frustrated by the group mealtimes, where she sits with three other women who are at similar cognitive levels. It can sometimes be very difficult to get her to go to the dining room at mealtimes, because she perceives it as “eating out” and that’s something she hardly ever did or enjoyed in her pre-dementia life.

When I imagine a life where I don’t get to influence any of my food choices, or choose something as simple as whether I want a boiled egg or cornflakes for breakfast, I get why she’s upset. Likewise, I can imagine how always having to eat with other people who she doesn’t really know (and who sometimes annoy her) begins to grate after a while.

I was hopelessly naive. Mom and Dad worked really hard and saved up a lot of money to “pay the nursing home” (or so they would always joke). I thought, even when her kids couldn’t keep up the schedule of caring for her, maybe we could hire private nurses to come work shifts in her home.

First shocker: There is no one available for you to hire, at any price. Finding anyone to work regular four- or eight-hour shifts is basically impossible. We live in a well-populated area, but even if you offer an exorbitant hourly rate of pay, you can’t find anyone who wants to work on an hourly basis.

Once we realized that “aging in place” with our help and hired help was a no-go, we looked into assisted living and Memory Care.

Second shocker: You can pay a LOT for the best nursing facility you can find, and even if the caregiving staff is compassionate (which, we have been lucky so far, the staff at Mom’s place largely is), the staff is massively outnumbered, caring for a large group of ambulatory, incontinent people who often have as many emotional swings and demands as toddlers.

I kind of had this idea of a nice private room for Mom, where she could have meals brought to her. This doesn’t work for two reasons: her facility doesn’t have the staff to bring people’s meals to their individual rooms, and Mom has the type of dementia that includes a lot of agitation, and she simply will not sit in her room and listen to music or anything. She also won’t watch TV because she can’t see it and also, she was never the type of person who watched TV.

I did not expect Memory Care to be this exhausting for Mom or for me. She has a lot of anger about not being at home (although, thanks to dementia, sometimes she clearly thinks she IS at home and is mad when the caregivers can’t fetch her specific items she wants from her own basement) and I’ve got a lot of sorrow that I have to leave this person I love sitting in common areas with strangers, all of them just sitting or borderline snoozing, tipped over in chairs, except for when they’re all pacing past each other.

Somewhere in my mind I had the nice idea that I would just visit Mom and play some music or hold her hand while she rested in bed or an armchair. I just laugh now when I think about that and try to tell Mom, as she constantly stands up from her armchair and says “Pack up, I want to go home right now. Me and the cow were getting along just fine in my house,” that there’s really no place else for us to go.

Yup. I said “cow in the house.” Mom and Dad were farmers and she tells us frequently how, toward the end of her time living in her own house, she had a cow in the living room with her and she was able to take care of it just fine, and it’s her kids’ damn fault that we didn’t just leave her alone to do that.

Dementia sucks so bad.

I often keep my Mom company in the art room, or the TV room, and while we sit there together, we are often approached by other residents. Sometimes this goes well, especially when the other person is still fairly high-functioning and you can hold some kind of conversation.

Other times these conversations with other residents are not as positive. Many people sitting in the common areas think, if you are under 70 and walking around, you are a staff person, and they start asking you for things you are not able to provide (like a glass of water, to take them back to their rooms, to help them find and get in and use bathrooms, for which staff members have keys but you don’t). I always feel very bad that I can’t help them. If I do, by some miracle, know them and where their room is, I try to do what I can to steer them back, or to find a caregiver to help them.

Other residents will also approach you just for personal interaction. One woman always tells me how people are trying to kill her. I now know not to walk too close to another elderly gentleman, who always tries to sneak a quick feel when any woman walks near enough.

I feel bad that I often “hide” with Mom in her room. I’m introverted and most days I’m already tapped out from interacting with teachers and other parents (I’m also on the PTO), as well as work contacts and other family members. I just don’t have much left to give Mom, much less other home residents. Even hiding doesn’t work some days, when Mom is agitated.

“Why are we sitting here talking when we should be packing? Just drop me off at home. You won’t have to do anything else. I can take care of myself just fine.”

Right after that she’ll tell me she hasn’t had breakfast yet, even though it’s 4 in the afternoon and almost time for supper. “The time is different here and the weather is all screwed up,” she often says.

Did I mention that dementia sucks?

There’s more I could tell you about life in a Memory Care facility, like how meds are handled and how facility staff often suggest meds that will help calm your loved one down (whether they do or not is another story), but I think you’re probably starting to get the idea.

I sould note, here, that your mileage may vary. Especially if you or your loved one are lucky enough to find (and be able to afford) an opening in an adequately staffed and pleasant facility, there are still aspects of life that can be enjoyed. Dementia is a very, very individual experience. My mother’s journey has not been particularly easy, but a friend of mine also had to place his mother in Memory Care (the exact same facility, as it happens, only a decade earlier) and tells me that his mother was always a sweet person, and she just became sweeter as her dementia progressed.

But I don’t want you to be surprised by as many things as I was. I want you to have some idea what people mean when they say their loved one is in Memory Care.