When we did the last interview In August 2020, I had just moved Mom, Mary Alice, from memory care into my townhome. During that time, my husband and I decided to build a house with a room for her. We did not know how long we had with her.
Mom actually got better for a while. She started eating, and gaining strength and her voice got stronger. I remember walking into her room early in the morning before starting work upstairs, and she would say “good morning,” “how are you doing,” or “thank you” after I gave her a cup of water.
One morning, her strength allowed her to move to the side of the bed. I smiled and said “Mary Alice, where are you going?” She looked at me and paused as if she thought “I have no idea.” And then we both laughed. She was funny and appreciative for whatever anyone did for her because she believed in doing for herself.
We celebrated her 83rd birthday on December 6. Around Christmas she started holding her food in her mouth. She just stopped eating. When I realized she was slipping away, I surrounded her with sounds of names of people she loved and happy times. “What a great time you’re going to have when they see you coming!” I combed her hair and made her feel safe. I knew I was getting her ready to go.
Right after New Year, on January 5, on my Father’s birthday, Mom slipped away from me. A week later the house was ready, but I could hear her voice saying, “you go on.”
My heart aches for my fellow caregivers who are not able to touch their loved ones or feel there is nothing more that can be done. You are not helpless. They still need you to make them feel safe. LBD can put them in a scary world. I urge caregivers to realize the difference it makes to enter the room with a smile, soft spoken tone, and gentleness. People with LBD do not remember a lot, but they understand what makes them feel safe. Even when Mom no longer knew I was her daughter, she knew I was someone she loved. I believe she felt safe, and she felt loved in our home.
