In my ongoing “Face of Lewy Body” series, I want to talk about two very important concepts to the person with dementia. Identity and relationship.
The diagnosis of dementia can literally make a person feel as if they have lost who they are. Sometimes it seems that those around them reinforce that by their reactions and dismissal. I recognize this and seek out friends and experiences that will lift my husband up and help him feel embraced and loved.
Here’s a photo from his recent monthly USNA alumni luncheon. When we arrived last week and I was helping him get his coat off, I saw everyone stop and watch us. But, it wasn’t with judgmental eyes. I believe they were trying to understand. John got up and helped me get Bill situated and seated among his friends. I can’t tell you how much this time together means to me (and to him:-)
The guys spent two hours sharing books, war stories and all the wild shenanigans they had done as young men. What a brotherhood! Through this wonderful group, Bill has retained his identity and has certainly found caring and loving relationships that I know will persevere.
Here is “The lesson: Preserve identity, celebrate personhood and create meaning in the moment” ~ Dr. G. Allen Power.
In my ongoing series of the “Face of Lewy Body”, this week’s insight is all about holiday celebrations.
Someone with dementia may be overwhelmed by all the people, noise, and change in environment during the holidays … things that we take in stride. A little stress for us translates into a lot of stress for them. But, with planning and oversight, we can create wonderful experiences and memories for them.
My husband Bill had 2 amazing experiences during the Christmas holiday, and I must say the friends who were responsible had no coaching from me. They have my admiration and gratitude.
First, Bill’s caregiver Sandy gave him a personalized ornament that she hand-painted. This meant the world to her and Bill.
And, then there is our friend Karen who invites us to Christmas dinner every year. This year was a little unique in that there were more people at the gathering, including 6 year old triplets as well as 4 dachshunds! I didn’t tell Bill about this because I knew he would say, no, he would not go. After we arrived, I stayed close, watching for signs of fatigue or frustration. But it worked out great, a day of fun and joy. The house was large so Bill found a comfy chair by the tree and gentle Stella climbed up in his lap. Good food and conversation was exactly what he needed.
Lesson learned: accept invitations, celebrate together, knowing that if you need to, you can always escape to a quiet room or go home early.