He sleeps today. It's almost 1 p.m. on a Saturday. Isn't there a song with a similar line? Yesterday was a good day. I'm learning to rest on the "sleeping days." We sort of slow danced a few days ago. Our granddaughter had bought vinyl records for her player and brought them in the sitting room to share with us. Nat King Cole sang,
Fred put his arms around me as I pulled him to his feet. As he lay his head on my shoulder, I held him up while we gently swayed to the music for a few precious minutes. Just a month ago, he was standing by himself and we would slow dance for awhile. Our last Shag dance was in November no special occasion, just heard the beat and began to dance.
Our days are filled with each other. Life does come around, doesn't it? Our first years, we were inseparable except for work. So much energy and desire for each other and for life in general. Today, our time with each other revolves around when he wakes, where he is cognitively and physically, and moving from the hospital bed to the recliner in the sitting room. Once he's settled in the recliner with all safety measures in place, I fix his main meal of the day. When I return I feed him the portion for that time frame to a background of Perry Mason reruns. Then, we sit. Together. Sometimes holding hands, sometimes not. Sometimes he speaks in sentences, most times not. His meal is broken into small groupings to aid digestion. Reading body language has become the norm. If I leave the room, I take him with me on the monitor in my pocket. Often in order to rest, I will open the door that adjoins the sitting room, lie on my bed with the monitor in view. Evening comes. Each week his time for bed becomes earlier. Ben, Jo, and I will get him to the bed, clean him up, and get him ready for sleep. After he takes his medicine, and I've tucked him, the monitor goes with me and I can look at him the rest of the evening while I go about the necessities of his care and mine.
I do have some alone and self care time Monday through Thursday now with Ashley, our Health Aide here for 3 hours each day. That is amazing!
I keep a daily log of tasks completed, what's happening with Fred, medical and legal notes, food that Fred and I eat. It's like keeping the notes I used to write Fred 3 years ago. The log lets me keep track of what's happening in our lives.
About a week ago, I turned a corner. The one I've been waiting for since 2016 when Fred was first diagnosed because we were seeing early signs of dementia. These dementia diseases are fatal. The same day I was having a particularly emotional time getting through, one of the husbands on the website for Caregivers wrote the statement speaking of Alzheimer's that it is a fatal disease. That one statement helped me put Fred's condition in the category of Stage 4 cancer. I am never getting my Fred back full time. This body houses the man I have loved for over three decades. And somewhere in there where I cannot access, he resides or has moved to a peaceful state biding his time until his body says it's had enough. Until then, I am the guardian of the man I love. I am to care for him and nurture him to the best of my ability given where he is. That helps. I have more peace now than I have had since we knew we were on this journey.
The time we met that I remember was dancing at a nightclub after Guard Drill. We didn't arrive or leave there together. We didn't even speak. He looked at me, held out his hand, and we danced. Then we parted. The rest of our story resumed a week or so later. Dancing has always been a part of us.
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