Tag Archives: dementia families

Dementia and Planning

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.

Dementia and Planning

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?

Dementia Families: We Accept that Our Lives are Different

Are you tempted to compare yourself to other people? Last week I almost made the mistake of comparing Mom’s 75th birthday event to other people’s parties. But that’s unwise. Having a mom with dementia means that our family experiences are always different. Mom is unique and her illness makes our lives distinct.

Between the Pond and the Woods

It was challenging to organize a gathering that would truly feel like a celebration. Many of our friends haven’t seen Mom since her condition began to slide. I felt the need to prepare people for the big changes that have occurred: the wheelchair, the lack of speech, the chronic sleeping. I have come to view these things as normal. But for most people they aren’t normal at all. Guests needed to understand that they would not be visiting the person they knew before.

Despite many logistical challenges, and the stress of making a party right after Christmas, I was happy with the way things turned out. Old friends came to visit, some neighbors brought their children. A few guests we barely knew showed up to help us celebrate. Mom wasn’t too, too alert. But she was aware that the candles and Happy Birthday song were meant for her. One of the sweetest scenes of the evening was our neighbor’s eight-year-old daughter blowing out the candles to help Mom. That was the signal to get out the handkerchiefs.

Given the choice, I’d do it all over again. You could feel so much love for Mom in that room. Even when their words have been erased, people with dementia retain a strange ability to sense the feelings of those around them. Although she was exhausted, Mom went to bed smiling that night. As for me, I was totally fried, but definitely pleased as I surrendered to sleep.