The wheelchair is in the usual place beside the window. The view is the same. It is that very narrow slice of the world comprised of the patio, the gardens, over the street to the restaurant, a parking lot and backyards. The passing vehicular traffic provides the only change in scenery.
Walking up to the wheelchair I see my Bert, head upright with eyes closed but not asleep.
“Good morning my darling. How’s my Bert today?” The eyes open slowly. I smile and a tentative smile is returned. I whisper “I love you” close to his ear and he nods his head.
My Bert no longer utters even one word. He no longer speaks. The man who would laugh when I told him that one formula for our happy marriage was that he talked and I listened is now muted.
I begin to describe the scene in front of him as with advancing macular degeneration I am not sure that he sees even that narrow world with any clarity. He reaches for my hand and then we play the usual game. As I try to take my hand away he tightens his grip. He smiles when I cannot get loose but this game is no longer usual. There was a time not long ago when I had difficulty loosening his grip. Now I am half pretending. I still my hand and he hangs on now rubbing my thumb up and down, up and down.
He has said nothing. He is permanently muted.
The birthday balloons are still hanging by the window. They hover half-heartedly. I had wanted to discard those two weeks before but when I told him I would put them in the garbage my Bert shook his head.
Today as I look at them and see the slow seeping out of the gas, look at their wrinkling softness and see them drooping towards the ground, I see them as a metaphor for my Bert. He too is losing his gas, his vitality; he too is wrinkling, shrinking and losing weight. He too is losing strength and settling into an unhealthy softness.
I am seeing Alzheimer’s Bert today. The disease is taking my Bert. He does not walk, he does not talk and he lethargically succumbs to having everything done for him and to him. He understands when asked to open his mouth for the next drink or spoonful of food. He nods, he shakes his head he clamps his teeth when he does not want to eat. He is not eating well anymore so he gets meal replacement supplements. He drinks better than he eats. I am grateful for that.
I find that living in ‘smalls’ is becoming more important as the ‘smalls’ are getting smaller. Just six weeks ago the small joy was the brightening smile and the shout “That’s my wife. That’s my Paula” as I entered the room. Now it is that tentative smile and the holding of hands.
I am getting used to Alzheimer’s muted Bert. I am getting used to Alzheimer’s Bert who can hardly keep his eyes open and the Alzheimer’s Bert that is the epitome of weariness.
I sing to my Bert and show my love the best I can. I overreact at the smile, the nods, the eyes that open one at a time or together. I praise a clean plate and emptied glass. I compliment his attire, his hair, his clean shaven face, his smile.
And I grieve.
My Bert is fading.
The Meander: I am beginning to wonder when enough is enough. The heart and the mind are in a constant battle.
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Am praying for your strength my friend.
Thank you, my friend.
So much appreciated. Thank you so much.
Paula, my beautiful friend and brave soul. It has been too long.
I am so sorry to hear about the decline of Bert. I can only imagine your anguish.
I too am in a similar boat only my mother still has her mobility, for now. I fear the days when her speech disappears and he body stops moving. I saw it happen to my grandmother and I fear the same for my mom. I don’t think I will be able to bare it. It’s hard to see her and have her not know me. It’s hard to see the lost look in her eyes. Bit by bit it tears at my heart. I only pray that she won’t suffer or struggle the way others have.
These days are unbearably painful and filled with stress. I don’t know truly how much more I can bare. I only hope that one day I will have the strength you have. Good luck to you my friend, stay safe and God be with you.
Don’t be afraid. Just pray for strength to cope and accept as there is nothing we can do to stop the steady decline. Bert is comfortable and gives me so much joy with his tentative smile. It is the lack of quality of life that makes me angry. Bert and ‘docile’ is an oxymoron.
Thanks for your kind words and good wishes. I am here should you need to talk. Blessings.
Oh dear! Can’t find the appropriate words. May you find strength to keep on keeping on.
Thank you, Erma.
My dear very long-time friend Paula, your “muted and failing” rang a bell for me (twice, in fact). One month ago this happened to Ms Mac (widow of Mr Dooley), and I played at her funeral. Two weeks ago I visited Desreen (laodice’s sister) and I watch her husband “muted and failing”. He died and I am to play at his funeral.
However, as I read your “muted and failing” latest Meanderings about Your Bert, I Thought of Psalm 90, verse 10. The “Message Bible” version puts it this way: “We live for seventy years or so (with luck we might make it to eighty), and what do we have to show for it. Trouble. Toil and trouble and a marker in the grave yard.”
My immediate reaction to this was – that is just not true for Paula and Bert. You two have had all these years together in love and a wonderful mutual caring life with all kinds of adventures and travels. Memories to last you for ever. Ups and downs – of course, since this is part of the life of all of us, but come on, writer of Psalm 90. you didn’t know about Paula and Bert!
Blessings Paula. you have been and always will be deeply loved.
How lovely. Please pass on my condolences to Desreen. If you were close by you would be tapped for my Bert’s funeral (or mine) as you must know.
This downturn has been hard and though I am now looking at ‘small’ mercies I must remember it has not reached the smallest as yet. The quality of life makes me angry as there is none. So now as I try to find my Bert within Alzheimer’s Bert it is my memory that is making me sad.
Thanks for this. I am seriously thumbing my nose at that writer of Psalm 90. He/she does not know us like you do! Hugs.
Paula Dear, thank you, thank you, thank you. I feel some of your pain, and I thank you very much for sharing these personal and difficult moments with us. Prescott and I hold you, Corbert, and Amy, up in prayers. We are here for you. Love you, and God bless.
Thank you. So good to know you are in our corner.
Dearest Paula,
It is so important that you write and share this. Thank you.
You are not alone but surrounded by a loving community of friends who are right by your side.
Warm hugs,
Bonnie
Friends like you sustains. I am grateful. Hugging you back.