I’m writing this in November, which is National Caregiver Month. It’s also Alzheimer’s Awareness Month. But regardless of when you’re reading this, if you’re a caregiver, every month is “caregiver month.”
Ironically, it’s also just a few days after the former first lady, Rosalynn Carter, passed away. She was acutely and astutely aware of the role of the caregiver and the toll that it can take on you. She so insightfully pointed out that we’re either going to be caregivers or in need of one at some point in our lives. She was diagnosed with dementia fairly recently, so she, too, experienced both ends of the caregiving spectrum. It’s difficult when those roles overlap. For example, you might feel under the weather, but you have to follow your Alzheimer’s-ridden mom out the door when she has a sense of wanderlust, whether or not the weather is conducive for a walk.
I became a caregiver when my husband and I took care of my mom for five years when she had Alzheimer’s. I encapsulated this journey in a book entitled, My Mother Has Alzheimer’s and My Dog Has Tapeworms: A Caregiver’s Tale. There are millions of caregivers worldwide. Although each person’s story is unique to them, many of the emotions are the same: stress, fatigue, and sometimes feeling overwhelmed, being at the helm of a sinking ship.
Since Thanksgiving is also in November, let’s talk turkey, shall we: Caregiving is stressful, that’s a given. But when you’re giving of yourself, you’re sometimes unaware of your own stress levels. In a way, that can be as detrimental as when you’re overwhelmed by it. I had breakfast with some friends one day when Hubby was watching my mom. We hadn’t seen each other in a while, and it was so nice to catch up. Later that night, one of these friends emailed me, saying that she had never seen me so stressed. I was surprised at her observation, in that I wasn’t crumbling, crying, or complaining, but apparently, my rosacea, a reddening of my cheek, revealed my stress. My rosacea acted up when my mom acted up.
About a week later, I was talking to an administrator at an assisted living facility, inquiring about a possible short-term stay for my mom, and we got to talking about hospice. He told me that hospice would provide some respite for me, the caregiver, for a certain number of days per a certain set time frame, and if it was an emergency, I could request more time. I told him that respite care for me wasn’t an emergency, and it never would be, and he said, “The way you sound, it was an emergency yesterday.” I guess stress in my voice gave me away, although I wasn’t aware of it. History, or should I say “herstory,” since it was really my mom’s story and mine, repeated itself, when I spoke with a hospice administrator a few days later, and she reiterated the availability of respite, stressing the ability to request more time if it was an emergency situation, and I told her that it would never be an emergency on that score, and she said, “Honey, the way you sound, it was an emergency yesterday.” Again, my voice gave me away. As caregivers, we are the voice for others, but we also need to be a voice for ourselves. In my Alzheimer’s book, I have a page entitled “The Caregivers’ Commandments” (with thanks to the “original author”). One commandment is “Thou shalt respect thy father and mother, but not at the expense of the well-being of other family members, including yourself.” I got run down, running down the street chasing my mom. At the time, I had no time to wonder and ponder why she’d wander. When I had a sinus infection, the doctor said, “You have the mother of all sinus infections.” Achoo, I mean Amen, to that.
I wasn’t prepared, as many people aren’t, for the fiscal and physical aspects of caregiving. As for the former, a friend had called me a while ago and said, “Have you seen the price of eggs these days?” A month or so later, we were talking again, and she said, “Have you seen the price of assisted living these days?” (for a family member). Yes, I have, and it’s not chicken feed. Regarding the physical aspects of caregiving, you might have to help “the patient” up and down stairs, up and down from chairs, etc., all while trying to be patient. (And this can try your patience, try as you might, not to let this get the better of you.) When I changed my perspective from “I ‘have’ to take care of my mom” to “I ‘get’ to take care of my mom,” that made all the difference. Since I could spend some “quality time” with my mom when she had moments of lucidity, I viewed my caregiving role as more of a privilege than an obligation. Even with a change of view, I always had to keep her in view because she could slip or slip out the door at a moment’s notice. “No rest for the weary,” clearly.
The toll that caregiving can take is often underrated, understated, and under-appreciated. It’s not as if one member of the family having a health issue exempts others from having the same. It’s hard when you’re spread too thin. (Well, my hips would disagree, but that’s another tale.) We caregivers step up to the plate, even as we have a lot on those plates. It reminds me of entertainers of days gone by when they would spin several plates on poles, high up in the air. They’d run from pole to pole, keeping those plates spinning, but it’s hard to do that as a caregiver without having your head spinning as well, trying to attend to everyone’s needs at “home plate.”
Rosalynn Carter was known as a “Steel Magnolia,” showing the same inner fortitude and mettle, combined with grace, of the main characters in the film of the same name. I think all of us caregivers become steel magnolias. It’s not that we deserve a medal for our actions; we just deserve a little peace. One of the songs that was sung at Mrs. Carter’s funeral was “Let There Be Peace on Earth and Let It Begin with Me,” (written by Jill Jackson-Miller and Sy Miller). As a caregiver, I guess I’d tweak those lyrics to say, “Let there be a little piece of peace, reserved just for me.” Here’s wishing all of you the same.
R. Lynn Barnett is the author of What Patients Want: Anecdotes and Advice and My Mother has Alzheimer’s and My Dog Has Tapeworms: A Caregiver’s Tale. She can be reached on Twitter @rlynnbarnett1.