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.

Birthdays in a Dementia Household

After recent health set-backs and a borderline hospice evaluation, my mom has had a slight rebound. She is on course to celebrate her 75th birthday next week. Somehow Mom found the energy to outlive her original diagnosis and make a winter comeback. We’re now buying candles and silly hats for a party.

Between the Pond and the Woods

Birthdays are strange when you’re caring for someone with advancing illness.  They may be more complex when the illness is dementia, since our loved ones lose ground so gradually. But I’m sure these celebrations are hard for families caring for someone with cancer or another excruciating disease. You hate seeing a person suffer so much; their quality of life declines in a million tiny ways. Yet, watching them find the strength and dignity to live through terrible problems brings some weird sense of achievement.

I get the opposite reaction from another person I know. He keeps saying he’d like his life to end when he’s 70 years old — he’s perfectly healthy, by the way. But he doesn’t like watching his mom and dad go to the doctor all the time to manage chronic illnesses. He hates that fact that they don’t seem as happy as they once did. I can’t share this attitude.  I get so much pleasure from small things in life. I love morning coffee and the sight of deer on my lawn. I’m delighted by the sounds of children playing in the snow and the shifting December light that makes everything seem mysterious.

I don’t know when the aches and pains of aging begin to trump small daily pleasures. It probably depends a lot on how you manage your health as you approach the golden years. But even with great care, your destiny is subject to many random influences. My mom took a walk every day and ate very nutritious food. She didn’t smoke or drink and never had diabetes. Then one day the doorbell rang and dementia arrived! The devastating news was very unexpected.

None of us get to choose the circumstances of our arrival or departure from life. You just need to pack your toolbox and be prepared to work with whatever fate brings. In the past three weeks I’ve gone from morbid speculation to buying confetti and birthday candles. I just keep looking for the silver lining. Here’s hoping you find silver linings among your holiday gifts!