As the snow banks retreat and the first nibs of grass appear, it’s easy to see why this time of year is revered as a season of miracles. When ancient people observed their first celebrations of Easter and Passover, the changing world must have seemed remarkable indeed. The spinning of the globe was not fully understood; the world’s position in the grand universe was still a mystery.
Rare and Elusive Easter Bears
Life must seem just as magical to someone with advanced dementia. Once the symptoms get to a certain point, a person has no real control over what happens to them in the course of a day. Physical and cognitive limitations keep them from exercising free will. Yet, in most cases, their needs are met. Hunger rises and then food arrives. Someone helps them get nourishment. Teeth are grimy and a mysterious hand brushes them. Clean clothes appear; dirty ones get washed.
There’s no joy in being helpless. But there must be tremendous amazement at how this process of life continues to take place, despite so many obstacles. My mother is so delightfully happy when the sweet icing of coconut cake crosses her tongue. She is so grateful when we dress her in a favorite soft shirt or tame the cowlick in her hair.
Making it through the winter was a struggle for both of us. Hoisting bags of coal and dragging ash cans. Shoveling snow and hacking ice from the walkways. My mother got treatment for the wound that sidelined her from walking. Now, as the geese return and the robins make an appearance, it does seem like the world still offers small miracles if you’re really paying attention. Mom had some kind of Renaissance that is allowing her to witness another spring. I don’t know what tomorrow will be like. But today is a beautiful example of why it’s not wrong to be hopeful, even in bleak times. No more coal, no more snow. Just a couple of Easter eggs and a sweet sense of relief. May each one of you find a moment to sense it, too. Peace be with you all.
Winter took another swipe at our happiness this week. Instead of counting robins on the first day of spring, I was shoveling snow. There were many traffic accidents near our home, and not for lack of preparation. Drivers have simply run out of patience. If you’re a caregiver, you know that’s a big mistake.
Everything about dementia forces you to learn patience — panic attacks, toileting, repetitious chatter. Adding patience to your toolbox really enhances your ability to provide care. The first time I took care of my mom — in the early stage of the disease — I was a total failure in the patience department. I was often frustrated by Mom’s slowness or her repetitive behaviors. My lifestyle was built on speed, not steadiness, and I found it hard to slow down.
At this stage of caregiving, I feel like the disease has re-shaped my attitude toward almost all of my mother’s behaviors. I used to cringe and wring my hands when she would grind her teeth (is anything more annoying?) But this morning, I stood beside her and massaged her shoulders and jaws until I could get her to relax, rest and stop. She hasn’t changed, something inside me is different. Meditation helps a lot. Opening your heart helps even more.
There have been many occasions over the past few weeks, when snowstorms kept family members and aides away from our house. That put on me duty for feeding my mom, which takes a very long time. This often forced me to shave my work hours. At first I felt so frustrated I wanted to shout. Somewhere in the process, I realized that the day will come when she isn’t here to share meals with me. I decided that I had to find the patience to feel the contentment that comes with feeding someone you love. It’s a decision that helped me do better by mom — and get more meaning from the caregiver experience.
Which aspects of care are the most frustrating for you? Which dementia behaviors force you to find the extra helping of patience that seems beyond your grasp? If you can identify the things that are most trying, you will also discover new opportunities learn from the disease and add something else to your toolbox. These challenges are not fun. But I do believe they make us stronger.