Whenever my nieces or nephew come for a visit, they always arrive with toys in tow. They come bearing dolls, Legos, stuffed animals, books, fidget spinners, balls, Star Wars characters, Trolls, Shopkins and anything else that will fit into their backpacks. A visit simply isn’t a visit without their stuff.
Adults are really no different. We just cleverly tote our stuff around in “e-backpacks”. Our phones and tablets are full of games, pictures, movies, videos, music, magazines, fitness apps, books and much more. People carrying their stuff with them is normal. It ensures we don’t get bored and perhaps for some provides a layer of security. We feel safer when we have our stuff with us.
This desire for an inanimate entourage also holds true for people with dementia or Alzheimer’s.
Before his diagnosis, my Father would spend time in his beloved basement workshop repairing or building things with his vast assortment of tools. As the disease progressed and his cognitive skills decreased, he would retreat to his workshop to take stock of his tools and write numerous notes to himself so he wouldn’t forget what needed repairing.
In the last couple of months, his workshop behavior has changed even more. One afternoon I came home from work to find him putting tools in large buckets. I peered inside one and saw a sander, a drill, a hacksaw, some drill bits, sandpaper and a utility brush.
“What are you doing Dad?”
“I’m getting my tools together so I won’t forget them when we go,” he answered.
The first time I heard this, my heart sank. We had finally reached the point where Dad didn’t think where he was living was home. I know this is very common behavior for people with Alzheimer’s, but this tool hoarding caught me off guard.
“Dad, you are home,” I responded.
Since that day I’ve learned that is the wrong thing to say. In his mind, where he is living is not home, even though he’s lived here for 35 years. He’s just visiting and that is his reality. If he thought he was in a spaceship that landed on Mars, that is his reality. And the last thing I should do is try to alter his reality, unless of course he’s about to harm himself or someone else. Instead, it is better to ask him questions about “home” to comfort him and help him feel more secure.
I wasn’t ready for this. You can know the diagnosis, read all the Alzheimer’s books to help you prepare for the changes that are coming and still not be ready when your loved one says or acts differently than before.
With each behavioral change or any measure of loss of my Father’s independence, I cannot help but grieve. I grieve that piece of my Father that is now gone. Although it is good to grieve, I can’t stay there. Because if I stay lodged in that place of grief, I am truly unable to help my Father where he is. He needs me to love him where he is now, not where he was.
At first when I came home to see those tools piled high and sitting next to the back door, my mind immediately thought I’d stepped into one of those ‘What is Wrong with this Picture’ puzzles. The tools go back in their respective spots and my Father goes back to the belief that he is home, in the same home he had built when we moved to Georgia.
But he has changed. And so must I.
When my nieces or nephew bound up our porch steps to come inside, never in a million years would I say, “You can come in but you have to leave your backpack outside.” What kind of aunt would I be?
So what kind of daughter would I be if I gave my Father the same ultimatum?
On those days I come home to find buckets full of hacksaws, brushes, drill bits, flashlights, screwdrivers and hammers, I focus on my Dad and not his tools. I ask him how his day was and try to determine how long he’s been in his workshop and if he needs to return to his chair in the living room to rest a while. Thankfully, when he leaves his workshop, he often leaves behind the idea that he is just visiting.
We really have a lot more in common with people who have Alzheimer’s than we might think. We like our stuff; they like their stuff. We need to feel secure. And so do they.