Self-care when there’s no time for self-care: What do you do when you feel like you've lost yourself in caregiving?
by - Julie Fleming
Over the weekend, I found myself feeling disconnected from my Self. Like most of us, I wear a lot of hats: I’m daughter, primary caregiver for my dad (who has late-stage Alzheimer’s and vascular dementia and has been in hospice since December 2014), responsible for family finances and running the household, business owner, active church volunteer, and the person behind the Alzheimer’s Caregiver Minute website, Facebook page, and Facebook group. On top of all of that, I took an emergency trip to support a dear friend and help with her kids as she moved her husband (who is also a dear friend) into hospice, and I ended up sick for the better part of a week. A lot has been going on… Topped off with the ordinary-for-an-Alzheimer’s-caregiver stress and grief, even stronger because of my friends’ situation.
I noticed that I was feeling exhausted, weepy, and short-tempered. Pressing on through everything on my to-do list didn’t help. As I was driving to church for the third meeting of the week (late, as usual), with a burning in my gut, I realized that I felt like a robot, not like myself. My Self. The person I was before the moment when I realized that something was wrong with my dad, before I realized that my plans were about the go on the shelf because I needed to care for him.
And I fantasized for a few couple of minutes during the drive about things I’d love to do.Escape to the mountains or the beach for a vacation. Just keep driving—nobody would know I was gone for a couple of hours, at least. Curl up in the sun and read a good book and nap. Go for a long day trip, driving somewhere new and fun. Go out to lunch, or dinner, or lunch AND dinner. Things that aren’t impossible in themselves, but they are not possible right now… Not without a lot of advanced planning, budgeting of time and/or money, and either a much bigger chunk of clear time or irresponsibility than I can muster.
I looked at my hands gripping the steering wheel, and they didn’t even look like my hands. That’s when I decided what to do for myself: a manicure. Of course, I didn’t have time to go to a nail salon and get a real manicure, but when I got home, I took a shower, pushed my soft cuticles back with the towel, and slapped on some red fast-dry nail polish.
Red nails remind me that I am still my Self. When I looked at my fingers (a long shot from being perfectly polished, but still pretty) I could remember that caring for my dad is who I am, is my choice and privilege, and that many of my other activities are a commitment to having a life outside caregiving and a life to return to when my caregiving duties are complete. Even today, with my polish chipped and battered, I feel a connection with methat keeps the endless task list from feeling quite so smothering.
Isn’t that what self-care while being a caregiver is all about, finding the things that remind us of who we are other than Caregiver? It’s easy to let our plans, our needs, our wishes, even our selves subsume into those of our loved ones. And because of the nature of Alzheimer’s and other forms of dementia, loved ones quickly lose the ability to remind us. The disease becomes all-consuming for those who are diagnosed and those who care for them.
Long-term self-care is critical for caregivers. Not only does us make us better at caring for our loved ones, but I also see it as a flag in the ground, a declaration to the disease: You are claiming my loved one, but you won’t get me too. I won’t let you take me. I will fight for me just like I fight for my loved one. If you need ideas on how to build self-care into your day-to-day life, click this button:
-by Julie Fleming
I recently shared this image on the Facebook page for Alzheimer’s Caregiver Minute:
It is, hands down, the most popular image I’ve shared, with (as of today) over 1100 likes on the Alzheimer’s Caregiver Minute page, 33 comments, and 2435 shares. I’m not surprised, because Teepa Snow‘s quote is a direct challenge to the often-expressed belief that dementia robs a person of who they are, makes them say and do things that they’d find humiliating, and leaves them essentially as an empty shell. A secondary belief is that the way we as caregivers and bystanders react to someone with dementia can give them as much dignity as possible despite the disease.
Honestly? Even typing those sentences makes me sick to my stomach. That’s how much I disbelieve those perspective.
Here’s what I do believe:
As I came to realize that those and other behaviors (eating with his hands, for example) were driven by the disease, I realized that he was doing the very best that he could with his eroding brain. When he says or does things that aren’t appropriate according to our ordinary social mores, I might explain so that others can understand that we are seeing a disease in action, but I no longer apologize. My father is disabled, and his disability is not inconsistent with dignity.
So, what does it mean to treat a
person who has dementia with dignity?
Author: Julie Fleming
Julie provided love & care for her father, who was diagnosed with Alzheimer's Disease in the fall of 2011 and with vascular dementia in 2014, until he died in 2017. And she had to learn it all the hard way. Sound familiar?
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