The Daily Reality of Caregiving

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.

the daily reality of caregiving

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.


Lost Memories take Strange Forms

Lost memories take strange forms. Sometimes you don’t even know what’s missing until you find clues that have long been stashed away. In recent weeks we’ve discovered things we didn’t know were gone.

Lost Memories take strange forms

During August, we began looking for the title to my mother’s car. She bought a golden #Nissan Maxima  in 2000. This purchase was her last big splurge before retirement and the car had every bell and whistle. Mom drove it with pride until we had to take her keys. Emotional alarms go off when a #dementia patient must surrender driving privileges. If they can drive, they can maintain the illusion that they’re in charge of their lives. Mom felt she’d been demoted to a lower caste when she gave up control of her fast sedan. It was a difficult transition for everyone.

Getting rid of the Maxima was like losing another piece of our mother. But years of road salt and slush damaged the car’s undercarriage so it was not going to pass inspection. No dealer or junk yard would offer any trade-in value without the car’s title. So we had to sort through boxes of Mom’s neatly organized documents which were jammed into the back of a large closet.

Pieces of our lives

We searched for hours. My sister and I sifted through piles of receipts and records Mom had labeled with care. That afternoon we discovered a trove of photos we’d never seen before. We found pictures of my mom with her mother. Both of them were wearing leather coats and looking tough in a way I don’t recall. There were tiny snapshots of my older cousins during their first years in school. They looked so sweet and innocent. Today they are grandmothers. More lost memories came surging back when we found Mom’s registration log and notary equipment. I had completely forgotten that my mother was once a notary.

Some items in the giant pile made us stop and weep. Examples of her neat, precise handwriting moved me to tears. I sat on the floor of that closet and remembered her incredible efficiency. We took a moment to grieve the loss of the tiny woman who managed payrolls and corralled CEO’s. Mom was terrific in the workplace. Each time her company was purchased, the new chief executive kept our mother on as gatekeeper.

When #dementia patients reach a certain stage, it’s easy to see them as a ‘vacant room’. But the evidence of their true character is all around them. Many lost memories are hiding in plain sight. We just have to open our eyes to them.