Location Disorientation: Finding "Home"

This week my grandma moved to supportive housing. It has overall been a very smooth and successful transition — our phone rings less... Because she is busy!

We went to visit on her 4th day living there. The companion greeted us as we came in the door and said, "She said you were coming!"

As we went into her room, she said, "Well, it's going to be a short visit because they're coming to take me somewhere soon!"

Look, we knew it was going to be good there. We didn't think it'd be that good. On her first day, our phone didn't ring until the evening, and then again when she needed help turning her TV off!

But, we knew it wouldn't be all smooth — the difference is we all have support now.

Location disorientation

Over the last few months, we've been having many more problems with my grandma calling and not knowing where she is. We, of course, anticipated this disorientation would get worse when she moved to her new place.

The phone will ring, and my mom (or her siblings) get a variety of different responses, " I'm ready for someone to come take me home now." is the most common.

Or, I'm not sure where I am, but all my stuff is here."

Changing housing for a loved one with Alzheimer's

My favorite this week was when she called my mom and said, "This has been a wonderful vacation, but I'm ready to go home now. I'm just not sure how I will pack all this stuff!"

I mean, at least she was having a good time, right? The brochures call this place a cruise ship on land, and they're not exaggerating. They even have lemons in the water dispensers.

Often though, of course, she is far more distressed. We usually use her familiar objects to help orient her and explain where she is by name and follow cues for how much more information she wants at that time as it clicks back in that she is indeed where she is supposed to be, and we know where she is.

Where or what is "home"?

I learned the other day about a specific challenge. I had felt the situation could've been handled differently by someone, and I wanted to understand how this might have been dealt with better.

We had known since she moved to her first apartment that she wasn't "home" when she was there. I didn't realize how we could've been articulating her new living arrangement better than being her "home."

I said to my mom, "I don't know how much of a difference it will make, but try telling her - this is where you live now instead of that it is your home, you are home."

When my grandma called today confused, I heard my mom saying, "That is where you live now." My grandma was disoriented and upset at this point, and it was pretty early for her to be confused.

My mom wasn't able to get her settled. She told my grandma she would call someone who works there to talk with her.

Companions to the rescue

The staff on the supportive housing units are called companions. We went to a meeting a few days before she moved in, which also had families of people who were new to the complex and had moved into supportive housing already. One woman whose mom had recently moved in could not say enough about how the companions are wonderful.

When we walked in yesterday, the evening companion said, "She's wonderful during the day. She gets a little ehhh at night."

This was why when she was upset at 4:10 today, we were a bit thrown off because it was early for that level of confusion. But, after she got off the phone with my grandma, my mom called the companion, who said she'd have a chat with her.

These are the people we need: not to replace us, but to give her the support she needs in the right ways. They probably know not to tell their residents they are home.

Promoting a sense of independence

And that lady at the presentation was right: the companions are wonderful. High energy and enthusiasm but in a measured and calm way. They help cue for activities, meals, and personal care, reorient, get the residents' snacks between meals if requested, and offer special treats. As the person at the presentation said, "This is independent living with cueing and reminders."

And that makes a lot of sense to me - 24-hour support is available but not always immediately present. The unit is locked, so residents can't wander alone. It gives people with dementia a lot of autonomy, but with support for the things that need doing.