Robrt Pela: 8 Things No One Tells You About Being A Caregiver

Published: Friday, February 21, 2020 - 9:28am
Updated: Friday, February 21, 2020 - 9:33am
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Friday is National Caregivers Day. Writer Robrt Pela has been taking care of his mother, who has late-stage Alzheimer’s disease, for the past 15 years.

Before she began losing her mind to dementia, my mother was a champion list-maker. She made shopping lists, Christmas lists, lists of people she was angry with, and lists of people she used to be angry with but now was praying for, because she didn’t like to hold a grudge. Mom’s daily to-do list always began with the same item: 1. Wake up.

Today my mother, who celebrated her 95th birthday a few days ago, can no longer make lists. So in honor of her birthday, and National Caregivers Day, I’ve made a list I’ll call: "Things No One Tells You About Being a Caregiver."

1. You can’t have a second glass of wine with dinner. You’re a caregiver now. Someone might fall and break a hip, and you’ll need to be ready to drive them to the hospital.

2. You will miss your old life. I have never once woken up thinking, “Oh, good! I get to go change adult diapers today!” I used to awaken when I was done sleeping, and not because it was time to fight with another insurance company about renewing the prescription my mother needs to get through the day.

3. You’ll fight to remember not to take illness personally. My mother has a disease that has ruined her brain. It has nothing to do with me.

4. You’ll have to rethink your relationship. I keep hearing about how I’m my mother’s parent now, because I’m in charge. No. She’s still my mother. It’s more a passing of the reins. I’m not raising her. I’m helping her die.

5. Your family won’t necessarily be there for you. I’ll just leave that one right there.

6. Insurance goes only so far. You’d think that a combination of Medicare and Medicaid and health insurance and a long-term care policy and a pension and 60 years worth of savings and a couple of good VA programs would come in handy — and you’d be mistaken. Elder care is seriously underfunded in the U.S., and home-health care is nearly impossible to cover.

7. People will remind you to take care of yourself but may not understand that caregiving doesn’t come with a lot of built-in “me-time.” Eight hours of sleep and three square meals can be a challenge when the person you’re looking after won’t stop crying or keeps trying to eat a desk lamp.

8. Give yourself a break. I start every day with a list, and at the top of that list is a trick I learned from my mother: “No. 1,” I always write. “Wake up.”

One Source, My Connection!