Adjusting to Dementialand

Flashback to the early 1990’s. I am sitting in the basement of my family home. My parents have just told me they are getting divorced. My dad is sitting on the couch. “Nothing is going to change,” he says. Yes, he actually says this.

Nothing is going to change. It’s not true. He knows it’s not true. Even as a kid, I know it’s not true. But he says it anyway.

Why? Because when life threatens to rattle the very ground we stand on, we cling to normalcy. In this case, we cling to normalcy even when normalcy isn’t all that great.

I have the privilege of talking to a lot of families who have recently had a diagnosis of Alzheimer’s or a related dementia. What they want to hear is “Nothing is going to change.” I won’t say it. It’s not true. They want to know that Grandpa will still be Grandpa, but I do to little reassure them of this.

They cling to their traditions, even when they don’t work anymore. They’ve always had Christmas at Grandma’s. They’ll do it again this year, even though it leaves Grandma stressed and frazzled. Grandma loves making the stuffing…except this year she can’t do it. But we still expect it. After all, she is Grandma. It’s what she does.

Mom loves visiting Hawaii. She and Dad go every winter. She’s a little different this year, but she enjoys it there. They’ll still go. Except that flying can be terrifying for someone with dementia. And waking up in an unfamiliar place can lead to panic attacks. Not to mention there’s always a risk that she gets confused and wanders off, looking for something that makes sense.

People with dementia are different than they were. We struggle to accept these changes, so we continue to try to stuff people into the same roles that they’ve always fit into. But they don’t fit anymore. They are different, so we have to be different.

We have to change our routines and our expectations. And just as we adapt to those changes, we must make new ones.

For the record, life did change when my parents got divorced. And I changed with it.