Holidays were big for my mom. She loved to decorate the house and cook and make special outfits for the two of us. I think that’s why holidays can be so bittersweet for me these days. I’m relating to the person my mother was and trying to celebrate in the way she loved, but the person she is today oftentimes doesn’t want to participate in any activities which makes me feel sad and miss her the most. Does anyone else feel like this on holidays?
Today is Easter and I wanted her to participate as much as possible. As children, we always went to church with new Easter outfits (I remember a lot of bonnets) and then received the much anticipated Easter basket. Being a chocoholic my mom always filled mine chocolate bunnies, chocolate eggs and chocolate lambs—no peeps or jelly beans for me!
We do an egg hunt with my caregivers kids and I showed my mom all the candies and toys and plastic eggs I needed help filling and placed a handful on her bed tray so she would help me. Last year closing the plastic eggs really frustrated her and she stopped right away claiming a headache. Surprisingly, this year she was able to close them easier and when she couldn’t, I had her fill them and hand them to me to close.
She even did more than I thought, which reminded me not to have expectations, but to keep offering activities. What works one day won’t the next, and that our expectations are what causes us frustration and stress, not the reaction by our loved ones. That’s one of my biggest lessons with this disease. Likes and dislikes change from one day to the next so staying open to new things as well as trying the old again is really important. Don’t be surprised if the long standing favorite food is suddenly disgusting. Don’t throw out all the Cheerios until you try again in a few weeks. One day she can perform a task easily and the next she refuses, but accepting that moment and not fighting is key to a little bit of harmony.
So, the egg filling went well and the next morning the kids would come over to hunt. I planned to take her outside in her wheelchair which I knew she would initially resist but then be distracted by the kids running around. The weather was lovely and she would enjoy the sun and having the kids run up to her showing her the eggs and the treasures inside.
Remember what I said about expectations??? The caretaker and I put her in her wheelchair as she complained non stop. Once outside the complaints turned to rage. “I’m cold, the sun’s in my eyes. I hate you, I’m hot, I’m tired….” You get the picture, so back inside she went agreeing to at least sit in her recliner instead of going to bed. The kids came in and gave her chocolates which always makes her happy.
When things like this happen the guilt tape starts in my head. Should I not force her to do anything? Why am I doing this to her, I’m making her worse. Who am I really doing this for? For her or to alleviate my pain of watching her lay in bed watching the same tv all day. To recreate the past that will never come back? Do any other caregivers feel this constant yo-yo of emotions?
Later I gave her an Easter basket with a stuffed bunny and new shirt which she loved. In dementia world, you learn to take the good with the bad.
Lesson of the day:
ADAPT & ACCEPT, ACCEPT & ADAPT, ADAPT & ACCEPT.
Comments