When You Love Someone Who Has Dementia
A little headache. I’m wondering if it’s barometric pressure.
A sunny day, then boom! a cloud and sudden splats of rain, then the downpour.
Yesterday I was drenched walking back to the car at Walmart.
Memorial Day weekend. The parking lot, filled to the brim. And what was I thinking, going to the store before my meeting?
Magical thinking. I needed a couple of things, and Walmart was on my list. I thought I could make it in and out of the store and then move on to my meeting before the rain hit.
I made it to my meeting but arrived as a drowned rat.
They laughed. I laughed.
Then we got down to it—the stressors, concerns, worries, how to cope. At Searching for Light Group (a group of people who are supportive of those struggling with grief, dementia, Alzheimer’s), we do not waste our precious hour.
The people in this group are kind and caring, and they are real, not plastic. Frustration and guilt are part of their stories. Always, they want to fix things for those they love.
An impossible task. We learn that. And learning that, we are led to coping skills, how to become resilient, how to fix ourselves.
Before we can do any of that, though, we have to understand our experiences. Not easy to find in the case of dementia, when a loved one is here but not here.
Whatever you thought you had a grasp on becomes confusing.
Mixed emotions. Like walking in a hard rain and asking why you are doing this.
Typical when you love someone with dementia. Best thing you can do is name those wretched feelings. Then you don’t have to wish it was all over, that someone would die. Yes, that happens. And yes, it is normal. Guilt, of course, follows. Typical, typical, typical.
And who is suffering—the one with dementia or the one with the responsibility? Hard to get honest sometimes. But in time....
The pain of the patient is our pain. But we must manage our own pain, too.
Suffering is a part of life, inevitable when we love another person. Whenever we suffer, we need resiliency enough to withstand the pain.
Dementia does not go away. (Oh, I wish I could say it did.) There is loss after loss.
That means there is grief after grief, coping after coping.
What we hear in our group is that the relationship has become one-sided. Yes, it changed from two-sided to one-sided. Connection is difficult. No closure. That loved one is here and gone.
So do we give up that person in our lives, or do we settle for a partial relationship? The people in our group are settling for a partial relationship, less than ideal but full of humanity.
Not the ideal, but you continue to visit, talk to, care for the person. No one is at fault. We manage the guilt, and we brainstorm with others who walk a similar walk.
Another goal of the group: to make peace with the ambiguity in the visits and in our lives.
A payoff: deepening in the spiritual realm and becoming more tolerant of the unknowns.
God is certain. Not much else is.
What I see in this wonderful group of people: they are able to laugh at the absurd, they are growing less controlling, and their patience is spreading.
Some losses are just incomprehensible. Utterly senseless. We work to accept this fact.
It’s a balancing act: caring for another and taking care of ourselves.
I learned this with my own mother again and again. I was a mental health counselor, but I learned what to do and not do by living it out with my mother. She lived in a nursing home. I was the visitor. I wanted a support group and did not have one until after I wrote the book Lights and Shadows in a Nursing Home. Now, I facilitate a meeting group called Searching for Light.
In this group, I’ve heard people say such things to each other: go out with your safe friends, go to the gym, call me when you get that sad, go play bingo, treat yourself to a dinner out, keep your job, see an attorney about that issue, get out of the house.
More advice: Catch your breath and stop trying to be perfect. Stop trying to control what cannot be controlled. Stop feeling guilty. Find a way to get a good night’s sleep.
If you need additional and professional help, go get it.
Our group meets every 2nd and 4th Fridays at 2 p.m. at Good Samaritan in Mountain Home, Arkansas. For a grief group in your town, check with your local hospital for information.
Outside the window on a low hanging branch, a cardinal is ruffling its feathers, and the sun has come out.
P.S. – You all have my permission to share my posts, the blog, or my website on Mondays or any day of the week!
Photo of a road beside the Sylamore National Forest, near Norfork, Arkansas, taken by Pat Durmon in 2015.