Dear Readers,
For some time now, I have been thinking of writing a chapter for my caregiver blog about the challenge of working with a demented patient.
Well, time's up. This is it.
Mind you, it will not be studded with medical terms or psychological analyses.
I'm certainly no medical professional. I'm a retired advertising copywriter who was asked in late 2014, shortly after losing my wife to cancer, to travel from Michigan to Wisconsin to serve as live-in caregiver for a family member.
This will be the story of an average human being, now 83 years old, who has learned some valuable insights into making life a bit better for his kid sister (now 80), whose mind is crumbling faster than his.
My sister's recorded first name at birth was Robin. But at age 2, when she was learning how to talk, it came out “Rawbaw!” Everybody in the family loved it — and her.
Earlier chapters of this blog have attested to her goodness, her intelligence, and her saucy wit. They've also related how she lost a foot to diabetes in mid-2015 and has since suffered a number of other physical challenges attributed to that disease.
Rawbaw was still pretty sharp when I got to Appleton and moved in with her to lighten her load.
Recently, though, I have seen her lose a lot of ground mentally as well.
Rawbaw is asking me repeatedly if we have both gotten our two Covid-19 vaccinations, and I am telling her repeatedly that we have. She also now often says she will take lunch at the dining room table but ends up in the living room. (The kid can really scoot around in that wheelchair — anywhere on the ground floor.) Particularly irksome for me, she is forever putting things away, never to be found again. Important things, like the menu for Dong Po (a fabulous Chinese restaurant that delivers), or our only roll of Scotch tape, our only box of Band-Aids, or “the good scissors” we had been using to cut each other's hair.
At first, I found myself thinking she was being difficult, maybe even dumb — although I had it on good authority that she was demented. A physician had told me so when she was hospitalized after having her right foot amputated.
It is clear to me now that I have been on a journey of understanding. And, based on what I've experienced, I think I can safely assume that a whole lot of people out there in Caregiver Land are feeling very frustrated, then very guilty, about “dumbness” in a loved one that I believe we can all eventually accept as something else entirely.
Dementia is not a plot to drive us caregivers crazy.
It is a terrible illness that robs many wonderful people of their memories — and can make them feel as insecure as a child lost in the forest.
Someday there may be a pill for it. Or an innovation in brain surgery. But until such time as the medical community serves up a breakthrough medicinal or medical solution, the mission for us caregivers is to make our demented patients as comfortable as possible with their failing minds.
This, of course, will require us to be more understanding, more loving, more sympathetic, and even more cheerful than we ever thought we'd have to be when we signed up to look after another human being.
Holy smokes.
We have to be wonderful.
Well, I'm willing to try.
Hey, the bright side of this is that I always wanted to be wonderful. And now I've got my chance!
This pep talk to myself is really working for me.
I sincerely hope it works for you, too!
—Michael E. Hearons
