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?
Laughter may seem out of place when you’re caring for a person with dementia. Things turn awfully grim when a loved one gets an Alzheimer’s diagnosis. Yet patients often find ways to show us that laughter is the best medicine. My mom can barely speak, but she’s found many ways to make a joke.
I often hear her laughing in the morning when I go to get her up from bed. We have a very sweet aide who visits on weekdays to help me with this process. It’s physically difficult because I have to transfer my mom from her bed to her wheelchair, then from the chair to the bathroom, then back to the wheelchair after we get her washed and dressed. You’d think Mom would just groan and complain the entire time we’re shifting her around. But she tries hard to get the aide and me to laugh with her. She has the full-on demented laugh — like a crazy sanitarium patient in an old movie. Sometimes she gets us going so hard, the tears roll down our face. Mom is happiest if we offer some true belly laughs.
“Janet,” I say, “Were you at a party last night?”
She looks around and giggles as if an invisible person is telling her jokes. We have a pet name for Laughing Mom. She is “Two-Martini Janet.” My mother never drank hard liquor but she cackles like a tipsy lady at a wild cocktail party.
My mother’s attachment to laughter may be extreme, but it’s not unusual for people with dementia to retain a good sense of humor despite their circumstances. The authors of The 36 Hour Day remind us that “a dementing illness does not suddenly end a person’s capacity to experience love or joy, nor does it end her ability to laugh.” Laughter, the authors say, is a “gift to help us keep our sanity in the face of trouble.” Humor also has therapeutic value. In an Australian research project on 400 nursing home residents (called the SMILE study) scientists found that “residents who received regular visits from a humour therapist saw a 20 per cent drop in agitation levels compared to those receiving standard care.”
What can you do to encourage laughter with your loved one? Try some ideas from the SMILE study. The “humour therapist” used a combination of games, jokes and songs to promote laughter. They also had a “laughter boss” work with caregivers to find ways to inject more humor into their daily routines. During stressful times, it can be hard to find the lighter side of dementia, but with the help of Two-Martini Janet, I have learned to become my own “laughter boss.” I worked hard to earn this title and I won’t leave this job unless someone has the nerve to fire me!