Christmas for Caregivers
It was mid-November, a time of year I usually love. The Thanksgiving holiday, which falls just before my birthday, always brings me a sense of contentment. My sister comes to visit and my Mom (who can barely speak) is overjoyed when she’s got both daughters within arm’s reach. She smiles when we’re all together and always finds the strength to say, “The two! The two!’
But even the thought of autumn togetherness could not lift my mood. I felt worn and ancient. On a physical level, my body seemed beyond repair. After two years of lifting my mother five times a day, my spine was angry and resentful. Five times may not sound like much, especially since she’s only 92 pounds. But without time to restore myself, each lift was like hauling bricks. In two years, my only real vacation had been a three day summer break.
My back was aching more than usual because I had been working on a series of writing assignments that were all due the same day. My bosses needed me to produce three 70-page beauties for a deadline after Thanksgiving — on my birthday! Writing at my computer for hours on end left me stiff as a rusty gate. When I stood up to take a break, I walked like a tired granny.
The Search for Respite
Most #caregivers know about this kind of pain. It comes from being on call physically and emotionally 24 hours a day. We seldom get the deep rest needed to heal. But I had reached the point where I was determined to get that rest. I knew if I didn’t get some kind of caregiver respite I would injure something besides my sense of humor — which already felt badly sprained.
My search for help led first to a cozy personal care home that rejected my mother because she was too frail. A second facility made the same decision. Mom’s condition was too fragile and no one wanted the liability of caring for her. Tears rolled down my face as I thought about her weakness and my own. The steering wheel was wet and I couldn’t find a tissue anywhere. I felt awful but I knew we had made it through painful trials in the past, so I tried to remember how we survived before. Some of those memories gave me some strength.
[Part I of IV]
Caregiving and cooperation go hand in hand. We aren’t good at caregiving if we can’t get loved ones to cooperate with us. We also have to coordinate care from many people to keep dementia patients healthy. Our conflict-ridden country could learn something valuable from our approach.
I tried to carry the entire burden of my mother’s care for a long time. This is a common theme with caregivers. Some are reluctant to invite others in because they think they have the right answers. Maybe we also fear losing control when more parties get involved. Last week’s rocky election shows that people resist cooperating on an even larger scale across the country. Everyone believes they know the correct approach so they won’t listen to different views. This type of stalemate doesn’t enhance dementia care and it won’t help our nation evolve. A research project at the University of North Carolina School of Medicine shows how cooperating more can offer benefits to people with dementia. It might provide an example for other aspects of modern life.
Caregiving and Cooperation Among Providers
Students in different training programs at the UNC Department of Allied Health were required to complete a joint project. They had to create a plan to address unmet needs of elderly people. Some students were studying physical therapy. Others were training to become occupational therapists. The group also included speech therapists. Students had to develop a menu of activities that would engage elderly participants, including people with dementia. Together the groups created a plan that offered physical activity, sensory stimulation, and discussion of current events.
Dementia patients worked with physical therapists on tasks like kicking or throwing a ball. Elders worked on conversation skills and memory strategies with speech-language pathology students. Occupational therapy students used newspaper articles to get elders talking and tackle cognitive tasks.
Near the end of the project students taught participants and staff members how to continue the activities. Their collaborative work impressed the staff enough to keep it going. In a follow-up survey, 43 percent of staff reported they were still using the strategies of the cooperating students. Families of the participants got some benefit from the project, too. Students made videos and recordings of personal stories collected from participants with dementia. They gave copies of these stories to the families so they could use them at home.
Why Cooperation Matters
Sometimes it drives me crazy when I have multiple therapists scheduling visits with my mom. I feel like I need my own secretary to manage her care. But I have seen first-hand that therapists get better results when they coordinate their efforts. Mom is more limber and relaxed when the nurse, physical therapist and occupational therapist work together. Wouldn’t it be great to see our nation reject the conflict model and work cooperatively to solve problems? It takes more time to listen and plan together. But in the end everyone gets to make a contribution and outcomes improve for us all.