Is it time to move?

Memory care. Assisted living. Nursing home. Continuing care retirement community. Skilled Nursing. Independent living. Residential care…the list goes on and on. Overwhelmed by endless options for eldercare communities, lots of us throw up our hands and avoid the topic until it’s absolutely necessary or just choose to muddle through on their own…even those who might be helped by residential care.

Obviously the time for a big change lies somewhere between “sure, mom’s doing well” and “I just don’t know what to do!” But when? How do you know?

Let’s look at how residential care decisions are made. I’d also like to learn about the decisions you’ve had to make early-on regarding future care options.

First off, I want to admit that, in the past, I’ve tended to support people living with symptoms of dementia living at home for as long as possible. To me, that meant someone would remain in her home until she had trouble with “Activities of Daily Life” (also sometimes called ADLs). That’s industry-speak for “things you do everyday”: getting dressed, using the restroom, eating, etc. Once she couldn’t take care of herself, then it’d be time to execute the back-up plan.

My old opinion was based on some personal experiences where I’d seen major moves be incredibly disruptive. Relocating someone who lives with symptoms of dementia can be very disorienting (to say nothing of dispiriting). Sometimes it will make her symptoms worse.

For one, “knowing” where things are (bed, sink, toilet, door) can relieve a lot of the burden of dementia.

There are physical “memories” that we usually don’t even think about. For example, envision yourself walking into your house at night, turning on the light, putting down your keys. You can probably do these things almost automatically. Well, people with dementia often can, too.

And leaving a familiar home for a new place can be really jarring. People react differently, but you’ll often see hints of disorientation. In the past I figured, “Why do that before necessary?” As a result, I backed seniors (and their families) who decided to remain in their own homes for as long as safely possible.

But now I’ve seen that people do better when they move earlier in dementia’s progression (be it to an adult child’s home, an assisted living community, or something else). Coping skills are much better then, making it easier to learn new routines and establish new physical memories if you move earlier on. And in the early stages it’s usually easier to communicate if something feels wrong.

Also, it’s really hard to make the call of when it’s time to move if you’re waiting until things get too out of hand.

Obviously the time for a big change lies somewhere between “sure, mom’s doing well” and “I just don’t know what to do.” But when? How do you know?

If your mom can take care of her ADLs but they take hours instead of minutes, is that the time? What if her abilities are really different throughout the day…maybe she can do things in the morning but struggles in the evenings? What about “good days” and “bad days?” Or do you wait until something dramatic happens?

From what I’ve seen, it’s pretty common for people living with dementia and their families to overestimate what they’re able to do on their own. This can be for financial reasons, personal promises, culture, pride…or just because you’re trying so hard to do the best thing that it’s hard to identify when it’s gotten to be too much.

But it’s still your choice. In the article “Should I stay or should I go” we’ll talk about why it’s so important to start this conversation as early as possible.

We’ll also look at some of the available care options (in-between living independently and moving to a memory care community). What about “adult daycare?” Or having a nurse visit regularly? Perhaps a sitter could come in for a few hours a day and help out…

So, how have you handled this? Are you planning on riding out the disease in your own home, living with a family member or in an eldercare community, or something else entirely…or maybe some combination? Have you discussed what you want with your family?

If you’re a caregiver or family member, what do you think about the options available nowadays? What’s been your experience?

Please leave your comments below!

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