The daily reality of caregiving can be monotonous. Tasks don’t change. Pressure doesn’t cease. Then a sudden event like a holiday, an illness, or a weather crisis throws us for a loop. Labor Day made last week difficult for me. Yet I wonder and worry about caregivers in the hurricane states.
A little Extra Stress on Holidays
When there’s a holiday on the calendar, it usually means I do more work instead of less. Last week was no exception. I had a deadline for an important writing project. To finish on time, I had to write over the weekend even while I had family visiting. When people visit, I have to cook and clean more. Plus we just painted the ceiling in the front of the house. I wanted to improve the space before the cold weather arrives. That meant moving furniture and getting rid of junk. I felt like I was working every single minute.
My sister helped with my mom, so that did free up some of my time. But I find that my role as #caregiver never diminishes. I must literally leave the room to restrain myself from doing tasks I normally carry out alone. The #caregiver sense of responsibility is relentless.
A long bike ride was my one holiday treat. We live about 10 miles from the #D&L trail which runs along the Lehigh River. It’s a 22 mile path following the old canal and rail lines that carried anthracite coal across the state. I wish I could take more bike rides but, as a #caregiver, I can’t be away from the house too long. Having another family member at home gave me some liberty to take care of my own health.
Grateful to be safe
As I complained to myself about toiling during the holiday, I watched the news of Hurricane Harvey. The sight of the flood waters and splintered houses made me see how much I have to be thankful for. Old friends of mine who live in Houston were lucky they didn’t have home damage. But they were surrounded by many people who lost everything. I saw photos and stories about children and pets, immigrants and refineries. No news of caregivers crossed my screen. How does a #dementia caregiver cope in a storm like #Hurricane Harvey? Our country has a limited support system for us in normal times. What happens to people with #dementia during a crisis of that magnitude?
These are times to be grateful for whatever peace and support we have in our chaotic lives. If you are a dementia caregiver living in the area affected by the hurricane, please send a comment. If there’s a way we can help from afar, let us know. Labor Day will now mean something new for people in the communities destroyed by these hurricanes. For most of us, dementia changed our definition of ‘labor’ a long time ago.
Caregivers lose memories, too. We don’t lose them the same way #dementia patients do. Instead, our duties make it difficult to keep track of our own lives and what makes them meaningful.
Our role as #caregivers gives us chances to transform ourselves through service to others. While doing this work, we often create new memories. But the never-ending list of duties makes it hard to enjoy special moments from other periods of our lives. Forgetting the past can erase too much of our true identity.
This loss of identity can also happen during other phases of life. When parents have their first child, most experience a tsunami of change. They know they’ll be responsible for the health and safety of a tiny vulnerable creature. But they also expect their child to be the focus of happy memories they will create together as a family.
Unfortunately, the transition to the role of #caregiver is not accompanied by so much hope and joy. We become guardians of a person in the midst of steep decline. This demanding role absorbs our full attention. It’s easy to forget we had pleasant times in the past. My sister recently accused me of forgetting a nice memory we discussed a few weeks ago. I told her candidly, “My mind seems to reject any information that is not essential. Every day I’m trying to keep track of which bills need to be paid. When I finish thinking about that, my mind fills up with a mental picture of what we need from the supermarket. Then I have to worry about who will be here to provide support each day.” This never-ending list of worries takes up room that could be dedicated to happier thoughts.
Remembering who we used to be
I want my life to be more than a to-do list. Fortunately, we’ve had a few days of fantastic weather in our slice of the Poconos. As I sit on the porch writing on my laptop, the occasional breeze makes me close my eyes for a moment. The green smell of the forest takes me back to my childhood in a small Pennsylvania town. I used to lie on our front porch swing and pretend I was asleep. To make sure no one would bother me, I’d put an open Nancy Drew book across my face. [When I added that Nancy Drew link just now, the sight of those book covers brought back ten years of my childhood.]
Thoughts of Nancy Drew take me further into the past. We had a large maple tree in front of that porch where I passed countless days reading or playing with friends. At certain times of year, the wind sent little seeds flying to the ground. Kids from my block called them pug noses. We opened them in the middle and used the maple sap to stick them to our noses. The Internet did not exist. We invented every interesting thing in our lives.
We built doll houses out of tissue boxes and played Monopoly for days. If someone was on the verge of going broke, one of the other players handed them money so they could stay in the game. Our goal was to keep the game going. No one ever felt entitled to own everything. Now our world is being managed by billionaires and corporations that won’t be satisfied until they own every resource on the planet. It’s a sad commentary on how the world has changed. But it’s also a good reason to take time to treasure your memories. No one can raise the price on the life you’ve already lived — and they can’t repossess your recollection of living it.