Planning is not my strong suit, but you have to look ahead when someone in your family has dementia. Unfortunately my forecasts are as dicey as the weatherman’s. Whether you listen to scientists or the Farmer’s Almanac, predictions about the future are often incorrect.
Because my mother’s condition continues to defy expectations, I have to look for stability elsewhere. We live in a place filled with natural wonders so I observe changes in the plants and animals near our home. The first leaves have dropped from the giant elm in our yard. A flock of wild turkeys chattered in a field as I drove home this evening. These signs tell me that summer is drawing to a slow close. Some of the beauty around our home is about to wither. Nature provides me with reliable information that I can actually use.
Doctors and nurses try to do this, too. They use their experience, observations and research to help us understand what’s most likely to happen next. The trouble is that variations of dementia are hard to diagnose and changing symptoms bring one set of problems after another. My mother also seems determined to live through this disease her own way. The same person who appeared so feeble nine months ago, now looks charged up and cheerful.
I love seeing my mother strong again. But sometimes her strength makes me more aware of my own weaknesses. As the evenings grow cooler, I ask myself if I have the vigor to make it through another winter while continuing to provide good care. My memories of last January weigh on me like nightmares from a battle front. Summer has been so peaceful by comparison. I don’t want it to end.
Many caregivers out there face worse challenges than I do so I try to focus on the positive elements of our situation. I chose to carry out this tour of duty and it has been rewarding in a hundred beautiful ways. My battle scars are piling up, however, and I don’t want to become one of those caregivers who lets their health crumble while they support someone else. The only actions that really help us are the affirmative ones we take to make sure we can stay strong. I made an appointment for a physical this week. This is about as far as my planning goes at this time. What plans have you made to ensure a healthy future for yourself?
Caregiver experience can be acquired by anyone working with a dementia patient. Caregiver wisdom is something else entirely. People can learn the mechanics of the job without getting any wiser about the disease or the human condition. How can we transform our experience into wisdom?
Can you find the hummingbird in this photo?
Merriam Webster says experience is “something personally encountered, undergone, or lived through.” Caregivers experience the challenge of communicating with those who can’t speak. We feel the exertion of helping people who can’t move. The smelly reality of incontinence is part of daily life. But just witnessing these things doesn’t make us wise. Some get the job done by going through the motions without ever seeing the deeper truths in front of us.
The word wisdom has many meanings. But the definition of wisdom that applies here is the “ability to discern inner qualities and relationships; insight.” In the past eight years, I’ve observed aides in residential care settings, senior programs, and in my home. I’ve also tried to examine my own behavior as my mother’s disease progressed and I logged years of “experience.” The wisest, most effective caregivers are often people with a personal connection to someone with dementia. Their workplace compassion has deep roots.
About a month ago, an aide visited my mom. She was subbing for someone who had a sudden emergency. Before I explained anything about my mom’s routine, she sat at my mother’s side and held her hand. This simple gesture was so calming to my mom. It was like the aide performed a magic trick. I later learned that for years she’d taken care of a grandmother with dementia.
Something happens when you’re close to this disease for a long time. If you really pay attention, you can see behavior patterns occurring below the surface of basic interactions. You start to notice how subtle changes in your behavior can have a deeper impact on the person in your care. My mom, for example, really trusts me and will often cooperate more if I reach her through touch and tone of voice before attempting some task. I was not always so careful with her. But over time I’ve learned that she responds much better when I’m truly attentive.
It’s very hard to give that much focus to an entire unit of patients with extreme needs. I feel sorry for caregivers employed in overcrowded settings. Many of them are too overwhelmed to provide the proper level of care. But I don’t have a lot of sympathy for slackers working in a situation that could make them much wiser if they paid some attention. There are definitely employees in elder care settings who neglect vulnerable people without thinking. Given the rising number of dementia cases across the country, I think we need to start asking public officials and health care policy makers to hold providers to a higher performance standard. As the number of dementia patients increases, our society must develop a system of care driven by wisdom from families and professionals who truly understand the disease. Are there any signs of progress in your neck of the woods?