Alzheimer's: The shame when things are too hard
A story on NBC’s Today Show earlier this summer caught my attention. Hard.
Tallulah Willis was talking about her dad’s dementia and her shame at being unable to handle it early on. She also talked about how she took things personally before his diagnosis.
When I turned 40, my mother did not call me. I was crushed. This was shortly before her dementia diagnosis. She kept getting confused about dates when she was to come help with my daughter; Mom would often come stay for a few days when I had work events. I thought she was no longer interested in helping.
On that milestone birthday, I finally called her at the end of the day, to say "hi." She did not mention my birthday. At all. This was a woman who had insisted on having a family birthday at a fancy steak restaurant for my 30th, even though I was in the middle of dealing with an abscessed tooth and could barely chew. She wanted things to be special.
When we finally realized what was happening, everything made sense. But those early days, especially because Mom was so young to receive an Alzheimer’s diagnosis at only 64, were confusing and hurtful.
As the disease progressed, I experienced many of the difficult feelings Tallulah Willis expressed about her famous dad.
Sometimes I had to stay away. I felt so guilty. My dad did not have that luxury. He had to face mom’s dementia every single day, oftentimes alone. I’m so grateful he does not hate me for that.
As I mentioned in a previous blogpost, at times I could sense seeing my mom was too hard for my daughter. I made sure to back off during those phases, paying more visits alone without Alicia. I learned that having an activity to do together helped. Many times Alicia spent hours calmly looking through photo albums with her Nana, something they both enjoyed.
And I made sure to space out the time expected of Alicia. There were times when we visited Mom when Alicia mostly sat in the corner focused on her sketchpad; art has always been a comfort for her. I came to understand that she was actively aware of us but needed not to be expected to be actively engaged. Her presence was enough.
I think we all had times when we were all over the place. I found it so comforting that my dad and brother and I never judged each other. We respected where we each were on the path. I think that space enabled me to see Mom more. If I had gotten too tangled up in guilt, a lot of my focus and energy would have landed there, instead of enjoying the moments I was able to have.
Space and grace are two words two which I returned many times throughout our journey. I’m thankful both were given to me and learned, in turn, to make sure to give them to others.
Helpful Resources:
- Dementia Alliance of NC
- Teepa Snow’s Positive Approach to Care
- TODAY.com: Bruce Willis’ daughter Tallulah pens essay on dad's health battles
Andrea Osborne is Capitol Broadcasting Company’s director of content. She has a daughter in college and recently lost her mother who had been diagnosed with Alzheimer’s. She will be sharing her family’s journey here on WRAL’s family section.
