“You don’t have to do that for me, I can do it!” I lost count of the times I heard my dad say this to me during the 10-plus years that I was his primary caregiver. He had Alzheimer’s disease.
Another common remark, in a more demanding tone: “Stop it! I can do it myself!”
It took a while but I finally learned to take a step back and at least let him try. I worked hard at letting him maintain his independence for as long as possible.
The reason letting go became so difficult, I believe, was because I’m a mere mortal. My human nature kept kicking in and I would feel a sense of desperation to somehow safeguard him.
Far into the disease I daily would take him to work at our bookstore to make him feel he still was part of our business — and of value. I set up a table for him behind the counter so he could process books all day. I built a wall behind him of boxed books. This worked well to prevent the customers from disturbing him and raising his level of confusion.
The way he priced everything, it was as though every book had the value of a rare collectible! Although I had to go back and change the prices, it was worth it. The main thing was it kept him calm. This was good for both of us.
One day, out of the blue, he glanced over at me and said, “Take me home. I can’t do this anymore.” Of course 20 minutes later he wanted to know why he wasn’t at the store.
The point I am making is that we should let them attempt to do things on their own for as long as they can, unless it becomes a safety issue. Naturally, I’m not saying they should use power tools or drive, but keep them involved with everyday life, to keep them feeling useful and needed.
I have a friend with dementia who tells me that every morning he spills his coffee all around his house. This upsets his caregiver, causing more work for her. Granted this might sound minor, but from the point of view of caregivers everywhere this is just one more thing to handle.
The caregiver in this circumstance might say, “Why don’t you sit at the kitchen table and I’ll bring you your coffee?” But that most likely will leave the patient feeling defeated and depressed.
As caregivers we should train ourselves to hold off jumping in and “fixing” everything. Let people with dementia try to succeed at what they’re attempting to do. Sometimes we need just to keep that watchful eye on them from a short distance. Forget about what they can’t do and leave that as part of the past, concentrating on what they still can do.
Let’s take up residence in their world, moment by moment.
For a decade Gary Joseph LeBlanc was the primary caregiver of his father, after his father was diagnosed with Alzheimer’s disease. He can be reached at firstname.lastname@example.org. His newly released book “Managing Alzheimer’s and Dementia Behaviors,” and his other books “While I Still Can” and an expanded edition of “Staying Afloat in a Sea of Forgetfullness,” can be found at www.commonsensecaregiving.com.