You Need a Support Network When Helping an Alzheimer’s Patient
By: Andrea Aikin
Tags: Health, Mental Health, Family, Relationships, Alzheimers

When we finally found a memory care home for our mother, it was such a relief. We had looked at a lot of places and some of them were scary. There was the place where the entire time we talked with the manager a woman was standing by the glass doors twenty feet away from us taking off her clothes and no one did anything. Nurses walked past her.

I mean, no one did anything.

My sister and I couldn’t get out of there fast enough.

I thought that the price would correlate to the level of service you received. The really nice places were $5,000 per month, but surely there were okay places for less than that. (This was a while ago, I know costs have increased.).

I was wrong. The scary places cost the same as the nice places.

It was kind of spooky. Did people do interviews by phone and not physically visit these places? I couldn’t figure it out.

Be wary of who you speak to.

It was such a relief when we found a program that retrofitted homes in residential neighborhoods as care homes with four to five bedrooms with round-the-clock care. Finding a place and feeling good about it felt fabulous in the midst of all the stress.

I naively believed my friends would share my positive feelings.

Boy, was I wrong.

Before I learned to not talk about it I identified themes to the criticisms. They fell into these three categories:

I was a terrible person for taking my mother’s free will away;

I was a terrible person for thinking I should make choices for my mother;

I was a terrible person for making these decisions without my mother’s input.

Well, rereading that, I guess the main theme was that I was a terrible person.

What’s the real take-away?

Be very wary who you talk to about Alzheimer’s disease care.

This time it is all about you.

People who aren’t directly impacted by Alzheimer’s are uninformed about the real issues. I had people tell me it was unfair that my siblings and I made decisions about what furniture to move to the care home without asking our mom.

We were talking about a person who didn’t remember she had seen you yesterday. The furniture was really not the problem.

People tend to be so caught up in their own issues they forget yours aren’t the same. They worry that as they age, they will also lose autonomy and people will try to take away their choices. They personalize your story to themselves.

That is so unhelpful.

What would help you is if they could acknowledge that you are stepping up and taking care of your relative. They should be hoping that if they slide into dementia someone will step up and take care of them, but that isn’t the first thought.

Create your support network.

Identify the people you know who have dealt with Alzheimer’s for a relative. Start with them and narrow down your search until you find one or two people who get what dealing with Alzheimer’s is all about. Unfortunately, there are a lot of us out there.

Once you find those one or two people, talk to them when you need support or advice. Otherwise, be very cautious about sharing.

If it’s a stretch to find someone that close to you, look online for a support group. The Alzheimer’s Association site links you with local chapters in your area and most chapters offer support groups in person and online. Finding someone to talk to and support you is critical to being a successful caregiver.

You need to take care of yourself so you can take care of the person with Alzheimer’s.

It’s like the airplane lecture — put the oxygen mask on your own face before helping others seated around you.

In all the stress of Alzheimer’s, remember to take of yourself!