I sent Step-mom Karen off to get her nails done and have some “me time” while I watched my dad. She definitely deserves a break. Dad is slowly slipping further away. It is not only a physical toll on her from having to care for him, but it is even more so an emotional toll to watch this once strong, brilliant man forget our names and call himself stupid when he gets confused. I couldn’t have done what she has done. I’ve only been home a month, and it’s already worn on me beyond imagining.
There are moments though . . .
Like when I learned to find humour in the midst of sadness. Dad is prone to forgetting things, imagining things, and getting confused. It can be so sad. My grandma tears up every time it happens. It can be frustrating. There are times he sets his mind on something and nothing can change it. Yet there are precious moments that bring him, my step-mom, and me to giggle fits. There was the time Rosa Parks came to visit in the back of our kitchen. There was the time dad kept trying to run away from my cooking. There was the time he thought he was Bond, James Bond and the nurses were building a bomb. Little things he says, faces he makes, and the way he answers questions could bring tears to our eyes if we focused on why it happens, the illness. He, however, has taught me to laugh and take joy in all the small moments.
Like when I learned to follow a simple schedule. Dad does best with a routine in place – Breakfast, a nap, a movie or puzzle, lunch, exercise, a nap, some quite together time, supper, an activity, get ready for bed, TV, sleep. This has required Karen and I to follow a simple schedule too. We do chores that require us to go outside or in the basement when we know he will be asleep. We sit down to meals together. We keep things simple so he can be the focus of our attentions. We take some time to also care for our own well being. I’ve learned that having structure and setting priorities really are important and make life much less stressful.
Like when I learned to let people and relationships change. Dad has actually been sick for over seven years now. It took a long time for the doctors to figure out what was wrong, and in that time he has changed. He went from being a strong contractor with the mind of a religious scholar to an emotional man with weak muscles and confusion. I grieved for years as I tried to hold on so tightly to the dad I had always known. I wanted him to be as he was. I wanted our relationship to remain the same. Letting go of that was one of the hardest things I ever had to do, but it was so freeing in the end. I learned to let our relationship evolve and to enjoy new aspects of his personality. I learned that people and relationships are meant to change. He cared for me when I was small, he taught me, he held me when I cried, and now it is my turn to do the same for him. It is a beautiful cycle of life full of love.
Karen and I don’t know what 2014 will hold for dad or us. The doctors cannot give us a timeline or even what to expect because Lewy Body Dementia is still so unheard of in the medical community. We know things will get harder until the end finally comes. We’ve already made plans if something happens while I am finishing school. It scares me so much getting on that plane tomorrow morning, but there is one other thing dad has taught me . . . We are never alone. I know God will be with all of us through the next months or maybe even years. He will give us strength and continue to teach us how to live a life of grace and love.
I know I will cherish every moment I have this year as I now also know that we don’t know how much time remains. Life is hard, precious, painful, beautiful, and just a shadow of what is to come.