Category Archives: Ideas to Float on

Four Seasons of Caregiving

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.

Four Seasons of Caregiving

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?

Four Seasons of Caregiving -- Fall

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.


Giving Thanks Despite Dementia

Mom joined us today in giving thanks despite her ongoing battle with dementia. She has struggled with her disease for eight years but I learn a lot from her every day. Thanksgiving 2015 finds me grateful that she is with us and still capable of setting a good example. Here are a few things she’s taught me.

Giving Thanks Despite Dementia

  • Don’t hold on to bitter memories — My mom has lost almost all short term memory as well as the majority of her long term recollections. You might be tempted to interpret this loss as a full-fledged tragedy. But the erasure has left her free of many bad memories. She has forgotten how to carry grudges and can’t summon up any reason to hate people. In her current state, she is a truly liberated person living with an open, loving heart.
  • Be truly grateful for the simple pleasures in your life — My mother can’t feed herself and it takes her a very long time to finish a meal. Nevertheless, she relishes each spoonful of soup and every last crumb of a chocolate chip cookie. You don’t have to eat 10,000 calories or spend a fortune to make your holiday meal special. Slow down. Appreciate what you have and savor what you love.
  • If you have only one phrase to say, make it “Thank you” — Mom can barely speak. Half of what she says sounds like a language from another galaxy. Yet somehow, every once in a while, she still manages to say thank you. When those two little words come out whole, I feel like I just won the lottery. Her example makes me want to try harder to be gracious. If she can do it, anyone can do it.
  • Laughter lightens every burden — Each morning, the first sound we hear from my mother is laughter. Sometimes it sounds crazy, demented. Then other times it’s an expression of engagement with whatever is around her. When she laughs, we laugh, too. It’s incredibly therapeutic. A good laugh does a lot to clear away pain.

It’s hard to be a caregiver.  I get tired just thinking about all the stuff I need to accomplish each day. But when I examine my deeper feelings about the situation, I see that it’s also a privilege to make this journey. Maybe there are other ways to learn these lessons, but for now I am giving thanks despite the daily ordeals that come with dementia.