I do my caregiving in the Pocono Mountains of Pennsylvania where the four seasons are usually quite distinct. It’s Christmas today. Though we have no snow for the first December in years, I don’t miss the shoveling and bitter winds. Caregiving makes me feel like I’m going through four seasons at once, regardless of the weather.
Being a caregiver for someone with dementia complicates your emotional life. This is especially true around the holidays. I get a warm, springlike sense of gratitude while reflecting on the fact that my mom has made it to another Christmas. It’s great to witness the small pleasures she still enjoys. The lights around our patio imitate dripping icicles. They fascinate Mom. Her eyes sparkle with delight when my sister hugs her. No moments are warmer than these.
But at the same time that I feel this rush of happiness, I also have a sense of autumnal sadness. Mom’s lost so much of her capacity to live a full life. She can barely walk, even with lots of assistance. Her eyesight is almost gone. What else can she lose, I wonder? Is there a line past which all pleasure in life disappears?
Nothing about this melancholy feeling is surprising. Who wouldn’t be sad watching the slow decline of a loved one? The bursts of hope are what really shocks. After eight years, wild fits of optimism overtake me when Mom is having a really good day. Once in a while she utters a complete, logical sentence and my heart just soars at the sound of her rare words.
The problem occurs when you leap from the hope of spring to the sweet summery expectation that things will get better. You start to believe the skies will be blue again and the sun will warm our skin. Maybe that’s true for us, but probably not for our loved ones. There is no setting back the clock on dementia. One good day or even one good week will not regenerate the skills of someone with grave neurological problems like my mom’s. Our future is more likely to be full of rocky weather and worsening symptoms.
In the end, it doesn’t matter much what emotional season we find ourselves in. We have to do our best to hold it all together and keep the ship afloat. May the winter holidays offer you hidden joys, sparks of hope, and a sense of peace to help you steer through every struggle and find happiness wherever you are.