“Is there such a thing as psychic exhaustion?” a friend I’ll call Shelley asks. She’s caring for a husband who suffered a stroke. He keeps falling. He’s depressed and angry. She’s having to do all the work they both once did. She sleeps as fitfully as a new mom, listening for him to try to get up, so she can rush to help before he falls again.
His condition is not improving.
Shelley’s love and loyalty are real. So is her pain. Dwindling hope takes a toll, emotionally and spiritually. Resentment creeps in. Then she feels guilty.
I understand. I loved my parents and took care of Dad until he died. I loved my husband Jerry deeply for 56 years. I don’t regret a single day of caring for him at home. But when he passed after two years of increasingly demanding needs, I wondered if there was such a thing as Caregiver PTSD.
Sure enough, it’s a real thing. Read about it here. Six years later I still have flashbacks and bad dreams.
Other friends have borne far more than I. One cares for a husband who lost both legs to amputation after a series of strokes and infections. He can’t sit up, talk, or feed himself. Three people I know tended to spouses with ALS.
Suggestions are plentiful but often unhelpful:
“Make time for yourself.” Thanks. Now tell me how.
“Get outside help.” Good idea, if you can afford the $25 an hour it’s likely to cost, with a four-hour daily minimum. Night shifts (so you can sleep) are more.
“Use your long-term care insurance.” If you have it (We did). But the first 90 days were on us. Unpaid service doesn’t count. Jerry died in the final week of his 90 days, so we paid a lot and never collected a penny.
“Seek help from family members.” This would be a natural, but it assumes family members are willing or able to help. Either because of geography or lack of desire, they may be scarce.
“Can’t you use assisted living?” In some areas the costs exceed $100,000 a year. Medicare doesn’t cover. Medicaid will pay after patients completely impoverish themselves by private pay care. And… the patient may resist leaving home.
What does help:
A support group led by a trained counselor. I attended one at Iona Senior Center in Washington, DC. for caregivers and patients with dementia. After an icebreaker together, the caregivers went with one counselor, the patients with another. My group included spouses and adult children caring for aging parents. People felt safe to let it all hang out – the darkness and the light. You felt heard and understood. Not judged.
A new story. My mother had Alzheimers and my Dad, who cared for her, had 4th stage prostate cancer. When he fell and I had to fly to Florida, Jerry and I insisted they move in with us. My American friends said things like, “Are you sure you want to do that? Maybe you could rent them an apartment nearby?”
But my Latina and Ethiopian friends all said, “Oh, you’re so lucky! I wish I could do that!” Some shed tears. It helped me see how I was culturally biased toward rugged individualism. I told myself a new story.
Community. Let friends, neighbors, people in groups you belong to know your needs when they ask. Caregiving can be lonely and hard. This is not the place for a stiff upper lip. People often really want to help. Let them.
Faith, if you have it. “Jeanine,” an Iona group member who attends daily mass, said, “I’m peaceful. This is what God has called me to right now.” Margaret Hodge, an 80-something evangelical Christian in Oklahoma and an ALS spouse, was preparing her husband’s funeral when she received word that her grandson was struck by a train and was in a vegetative state. As soon as the funeral ended she drove to Tennessee to help with his care. Back home, she has opened her home to children, college students, and foreign young people. Giving herself is part of her faith.
I invite your stories of surviving caregiving and dealing with its inevitable aftermath.
I don’t know how to do this beyond taking it a day at a time. I am younger and much healthier than my husband and he is determined to maintain as much independence as possible. Still, the responsibilities, worries and limitations grow. Luckily, dementia is not an issue for us–I am not in this alone, we are in it together. As a couple, the keys to our survival are a good sense of humor and considerable openness. Mutual kindness and understanding. I was overwhelmed and disappointed by the return of extreme COVID restrictions during the holiday season and told my husband that all I wanted to do was spend two days in a cabin in the woods totally alone! He completely understood and was not upset or offended. What a gift that is!
Carolyn Parr says
Thank you, Rebecca for that good word. “We’re in it together” is such an appropriate reminder.
Hildy Cardaci says
Carolyn, this essay speaks truth! It is so hard and lonely to care for a beloved spouse until death comes. All your observations sound true. And the options are limited and often painful and in many cases financially destructive as well. After it was done I felt as if I was slowly resurfacing from a deep pond and reaching the surface for a gasp of fresh air. I had survived!
Thank you, Hildy. It’s not a happy dance, but we do it because we love them.
Thank you, Carolyn. Very true. I’m glad I had all the help I did.
Carolyn Parr says
Martha, I know your life has not been easy. You gave so much. I hope now you can pamper yourself for a little bit!
Lois Fussell says
Thanks for the article. When my father passed away, my mother came to live with us. After a short time I realized how much he had been caring for her. (He died from a sudden heart attack.) It was stressful. A friend told me of a group at the Unitarian Church who was giving a program on caring for aging parents. We met bi-weekly. It was a supporting group and was most helpful at a very stressful time.
Carolyn Parr says
Lois, I found my support group very helpful also. It was the one place I could be totally real. Thanks for writing.