Tag Archives: dementia and holidays

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.

 

Part IV Christmas for Caregivers

Part IV Christmas for Caregivers may surprise you by appearing in mid-January. But if you’re a #caregiver, I don’t need to explain. Our endless stream of duties (doctors’ visits, insurance claims, meal prep, pharmacy…) turns each day into an endless to-do list. Throw in tree trimming and gift wrapping and it suddenly feels like December might kill you.

Part IV Christmas for Caregivers

For me that feeling was becoming too real. My shoulder had been injured more times than I could count and my back was aching. I knew I couldn’t make it through the holidays unless I took some kind of break. Mom’s aides could see that exhaustion wearing me down. More than once they heard me say that I might have to move my mother to skilled nursing because I just couldn’t manage anymore. They worried for me, for Mom, for the future.

My support team is an odd mix of single moms, retirees, teenagers, ex-nursing home aides, a sister, and some friends. They are very loyal to my mother who can still charm people without being able to speak. Some have been helping out for more than a year, a few have been with us longer. I didn’t know they were having a private discussion about my situation until the day I returned in tears from a second nursing home visit. Two of them were standing in the kitchen waiting to learn if I found a site for respite care.

“It’s not gonna work,” I told them, “That facility specializes in diabetes care and they were not prepared to provide advanced dementia care. No place is going to take her because she needs two people for every transfer from her chair.”

I was ready to accept our sad fate which would probably include another move for my mother. This time to a skilled nursing home.

Part IV Christmas for Caregivers, the Real Gift

One of our aides stopped me before I could say one more thing.

“We have it figured out,” she said, “You can take your vacation.”

“What do you mean?” I asked, “There’s no place for Mom to go while I’m gone.”

“No,” the aide told me, “There are enough of us here to cover for a week without you. We just need someone to be you.”

I still didn’t get it, “What do you mean? How could someone be me?”

She laughed, “One person has to stay here every night, like you always do. The rest of us will just come in and help at our regular times to give the night person a break. That way your mom can can keep the same routine, with people she already knows, and you can take a real vacation.”

I considered this for a moment and realized that we might actually be able to work it out. Of course I would pay the person who took over my duties and stayed overnight, but that wouldn’t cost more than respite care. With this arrangement I wouldn’t spend my whole vacation worrying because I already trusted the people involved.

It took a few hours of strategizing to create a schedule for everyone. Once I did it, I felt tremendous relief. For the first time in years, I started looking online for cheap airfares and hotels. I decided to go back to Santa Fe, New Mexico, a place full of creative traditions that always revive me.

The people who help my mom every day gave me the best gift anyone could possibly offer a #caregiver — real rest. In my vacation week I read a great book (The Round House, by Louise Erdrich) from start to finish. The Santa Fe Film Festival was underway so I saw a few movies. I got therapy for my back and shoulder. By the time I got home, I felt like my old self — the person I was before #dementia struck my mom.

Mom is still content in her chair.  We have no idea how long she’ll be here, but I’m so grateful that our support team helped me get a second wind. For right now, that’s enough.