Wednesday, 8 July 2015

Carepartner Wednesday--The Carepartner's Alphabet--U

U is for usual.

We all have "usual" in our lives. "Usual" is the routine we follow in the morning to get ready for work. "Usual" is the same commute every day. "Usual" is the tent peg driven into the ground of our lives that anchors us.

If "usual" isn't "usual" it doesn't ruin our day. Sometimes it's annoying, like the day the subway broke down and my commute was longer and harder. Sometimes it's fun, like the ice cap I bought today instead of my "usual" coffee.

For someone with dementia, "usual" becomes their salvation. Within the familiar places and the comfortable routines, people function fairly well. They move around the same house they have lived in for thirty years, performing familiar tasks in the same way they always have. Many times, families are fooled and don't pick up on the changes and losses, because they are functioning so well in the "usual." Let them go outside of that, and they flounder.

Because their comfort zone is the familiar, this is also a way to help with the agitation, anxiety and even aggression that sometimes accompanies the disease. There are many causes for these behaviours, but often they are grounded in the fear that comes from unusual situations where they feel out of control. If I am in a place where I feel lost and unsure about what to do and where to go, I will probably experience anxiety, I might lash out, or cry, or wring my hands. I'll definitely want to get back to my "usual" where I feel comfortable.

There is another aspect to "usual" and in my mind, this is far more insidious. It occurs in the mind of the care partner or family member who mourns the disease. It's alright to mourn, and is necessary for a period of time, but sometimes this longing for the "usual" steals everything that is left.

Here are some of the statements I've heard or read:

"Alzheimer's is a horrible disease that stole my mother."
"I lose a little more of her every day."
"We used to _____________(fill in the blank) but now she only_________(another blank.)
"I get so angry/sad/upset that she doesn't remember me or the things we did as a family."
"She's not my mother any more. I don't recognise her."

It takes every ounce of control, when I hear these kinds of things to not shout, "GET OVER YOURSELF!"

Yes, it's a horrible disease, and it's hard to watch someone you love struggle with it. But don't make "usual" your god. Don't mourn what was, so that you miss what is.

Here is what is true:
Alzheimer's is a horrible disease. It hasn't stolen your mother. She has changed and will continue to change, but she is still there, and is a gift to you. You can focus on the disease and your losses, or you can focus on the gift.

Your choice.

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