Not me! For too long no one heard me speak this four-letter word
Several years ago, even when the pernicious effects of Alzheimer’s and Parkinson’s began changing our routine, I thought I could handle them. I didn’t ask for help, because I didn’t think I needed it.
Again and again as time went on, the disease effects grew greater. But I accepted assistance from paid or volunteer caregivers only when they came to me without my asking.
Lisa
It started with Lisa, a friend from church who had stopped by a time or two for a friendly visit with Evelyn. Lisa is a professional caregiver, and a friend said to me, “Why don’t you pay her to visit Evelyn? That way, Evelyn will get used to her being there.”
With that prod, I moved forward. Lisa came one afternoon every week. Sometimes she and Evelyn just talked. Sometimes they watched a video. Occasionally they made cookies or cleaned out a drawer or did some simple art project. Lisa loved to sit with Evelyn in the sunshine on the deck.
After a few weeks, I asked Lisa how she thought it was going, and she said, “For the secondary caregiver and the patient to bond well, it’s best for the primary caregiver to be gone.”
Oh. From then on, I left each week when Lisa came.
Often I took my computer and worked on some assignment at Panera or the library. Usually I also got groceries or ran other errands. It wasn’t long before I started looking forward to those precious four hours, and Evelyn was glad to see Lisa coming, too.
As it turns out, I really did need her.
Jessica
I wasn’t so sure when a friend told me about Jessica. “She’s really good, and she has lost a client. She has Mondays free.”
Sweet Jessica was willing to come just four hours on a Monday, even though she was available all day. I didn’t think I needed her, but something (or Someone!) told me it would be foolish to let her get away. Never have my instincts been more accurate.
Jessica was a force for good at our place—cooking, cleaning, and straightening, all while interacting with Evelyn in all kinds of creative ways. And now she sees Evelyn four hours several days every week at Artis. Her love shines through in the texts I shared last week. I’ve never been happier about acting on a friend’s recommendation.
Many others
Later Tory came, again after someone from church recommended her. What would I need with three helpers every week? I wondered. But Tory was available not only on her assigned day but at other times when I needed or wanted to get away. One Saturday morning I called her and asked if she could come anytime that afternoon so I could get to the store and run a couple of other errands. She made a way to be there.
All of this was in addition to other women from church who loved Evelyn and wanted to see her and help me. Melinda, Karen, Sarah, or Shirley came, and I left them with Evelyn to go to the dentist or attend a funeral.
Evelyn’s dear friend Cindi had retired and told me she wanted to come help me one day a week. This allowed me to keep volunteering on Friday mornings after Evelyn started wandering and I decided I couldn’t leave her alone. God provided Cindi just when I needed her. And if she was busy on a Friday, she arranged for Evelyn’s longtime friend Jan to take her place.
(And Jan was there for special needs several more times than those Fridays.)
Not enough
I now see how even all that help was sometimes not enough. As time wore on, I was on task and on guard every minute I was home. Sometimes Evelyn would take an afternoon nap. But just as often she was up and down and around every room in our small house, sometimes moving from bed to bed for her naps.
Once I left her resting on the couch in the living room while I cleaned the deck outside, a few yards away. After 30 minutes, a neighbor came through the patio door to tell me Evelyn had showed up at her front door, confused about what to do next.
I had put an alarm on the front door so I’d hear it if Evelyn opened it in the middle of the night. Later I started activating it during the daytimes too if I left Evelyn out of my eyesight.
Too soon?
One day I was talking with a friend about the possibility of finding a place where Evelyn could stay briefly so I could have a break and go visit friends out of town.
“Mark, you really need a break,” he said.
I learned later that many in my circle were concerned about me. I didn’t realize I looked tired and thin. I should have known I was not always a good judge of what I really needed. \
By the time we found respite care for Evelyn, I decided it would be permanent. Did I really need the help we’d get with her in residential care? Even as we moved her, I wasn’t sure.
But, of course, now I know I could never care well for her at home by myself or afford 12-18 hours of in-home assistance every day. Evelyn and I desperately need the care she’s receiving where she’s living now.
Strong . . . or just proud?
I’ve come to see that asking for help is a challenge for many. We think we’re being strong or responsible when the real issue is our pride. Men my age are haunted by images of John Wayne or James Bond facing down every foe or the Marlboro man totally in control as he rides into the sunset.
And I’m learning this problem is not just with men. Especially longtime homemakers, accustomed to keeping the house together by themselves, sometimes cannot admit the task has become too great to handle alone.
For both men and women, waning energy, failing eyesight, or fuzzy hearing can increase our anxiety when the demands of caregiving increase.
I’m grateful for the gentle prods and kind offers from friends close by who nudged me toward accepting help. I can see now I needed every moment of it.