Okey-Dokey Advice from a Surprising Source
Dear God or Divine Guidance or Jesus, Mary, or Joseph:
Please help me stay optimistic.
Please don’t let me become bitter and brittle.
I struggle every week to be caring, patient, kind, compassionate, and a good listener like all the Parkinson’s and Alzheimer’s associations recommend. I struggle not to morph into a victim. But man, oh, man, some days are really hard.
His hallucinations are usually nice monkeys or children, but those snakes last week were violent. He threw his iPad across the room to “get ‘em.” He installed security cameras outside and inside the house.
He keeps accusing me of being the cause of all his issues and discomfort.
Then there’s obsessive spending on sump pumps, hoses, and replacement parts for the sump pumps. We’ve never needed to turn the sump pump on. We now have three sump pumps installed. Jesus, please never flood our yard.
Then there are the denials. “I’m fine,” he says when I try to pick him and the rollator up off the floor at 2:30 a.m. This is not fine.
And, dear God, I hate that edge in my voice when we have visitors.
“Wow,” they say. “He is doing great. I thought he’d be in worse shape after all these years with the disease.”
“He is not doing great,” I correct them. “You have no idea.”
My response makes them feel uncomfortable. Maybe they think he’s right when he tells them I’m going crazy, not him.
Thank you, God, for sending me good friends going through the same things with their husbands. They’ve taught me so much, and they never judge my despairing outbursts and stories about what’s going on with Greg and me.
I’m so sorry these friends’ spouses have been sick for so long, God. They’ve told me about their angry, bitter years and how they’re behind them now. These caregiver sisters are amazing people. Please, God, make me more like them. Help me get beyond this bitterness. The sooner, the better.
Lois
***
Dear Lois,
This is God. I’ve reviewed your many letters and want you to know that I have love rays beaming into your house.
I overheard you telling your sisters that you’re finally settling into the new place, making it a home vs. a temporary place to live until he dies. This acceptance you’re feeling is from one of the love beams. Remember last week when you thought the moon was lighting up the pond outside your bedroom windows? Those were my love beams.
In addition to the love beams, I’d like to suggest a few things.
I want you to let him go down to the cellar and play with his new sump pumps. Stop nagging him with “Be careful!” whenever he goes downstairs. If he falls down the stairs, you call 911.
If he buys too many hoses and sump pumps, you eventually call JD Junk Dog, and they’ll take them away in their trash trailer. No big deal.
I also want you to practice using a new word. Every time you mutter “fuck” loudly or in your head, replace it with “okey-dokey.”
’Cause, honey, it will be okey-dokey. You’ve got so many good friends. You’ve got enough money to hire some help. Whoa, whoa, do I hear you pushing back on that statement? I know you worry incessantly about money, but there will be enough. Not gobs for National Geographic trips or a house in Woods Hole, but enough to hire help so you can get away for a couple of days.
Know that winter will be hard again. Your friends will be heading to St. John, Florida, Portugal. You’ll be putting ice melt on the driveway.
I’m absolving you of all Puritan guilt about being lazy in the dead of winter. Read, binge on those series, sleep late. When you’re rested, you’re much less likely to be bitter.
You can do this, my love. There is nothing good about this situation with your husband. Know that I am not testing your goodness nor making you do penance for that which will not be written. It’s just the end of life on Earth, the wearing away of minds and bodies. This is not to be feared.
Others will have their challenges, too, so don’t think you’ve been called out in some special way. You’re just walking through this earlier than your friends.
You do know, I hope, that your friends have always looked up to you, especially your bravery. Show them how to care for a partner bravely. Let them in on the struggle for love over bitterness. You don’t have to hide the ugly and put a smiley face on things. We don’t give sainthood to martyrs.
Things will get worse — you know that. I am here for you, as are your sisters, cousins, friends, neighbors, and 911 EMS professionals.
Now go take a shower, put on your favorite fleece sweater, turn off the computer, and relax.
Okey-dokey?
***
Dear God,
Okey-dokey? For some reason, I thought you’d sound more dignified, like a British Shakespearean actor. But roger on the relaxing and not becoming oh-woe-is-me all the time.
Lois
***
Excerpted from “Slow Loss: A Memoir of Marriage Undone by Disease,” by Lois Kelly. September 2024.