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The Autumn of our Life Together

September 22, 2014

I have always enjoyed autumn. A beautiful season with a myriad of colors…the smells of baking, wood fires, spicy candles. Warm afternoons with cool breezes. Autumn this year feels different. I feel more like it the autumn of our life together. The changes are subtle but noticeable. I can’t deny the problems that torment him. The awful night terrors despite medications…the kicking, screaming, punching….I am more frequently driven to seek sleep in another room beginning about 4:OO AM. The droop of his eye, his slack jaw while watching TV or other activities, the problems word finding, the anxiety and depression. They all combine to remind me daily that this is the autumn of our life together.

Yes, we take walks, embrace, smooch,talk about our children, go to church, shop together and amazingly still make plans and decisions together, but more often than not, he says “Okay” when I know he couldn’t repeat the question. He has more difficulty following the plot line of a TV program or movie. He asks questions that seem very odd at times. Lately he has been a bit more prone to sadness and I think it is because another summer is gone. It is autumn and I believe the realization that he now has one less summer to look forward to before his death is haunting him. Of course that is true of all of us, but it seems different when one has a terminal disease. When you don’t just look in the mirror and see yourself age, but see your face is expressionless, your mouth is slightly turned down on the right and your right eye droops a bit….your neurologist tells you it is simply part of the disease of LBD. You get a new LBD journal which again reminds you that your life expectation is 5-7 years from diagnosis. You feel yourself slump…defeat edges in.

He is more apt to fall these days if he is not very cautious. My simply drying him after his shower could tip him over if he doesn’t hang on to the glass blocks of the shower or the hand rails. He did fall off our pontoon boat….no harm except some bruises and the fact that my oldest son had to dive in to rescue him. No more boat rides. He has taken a couple of tumbles in the garage…again bruises only but it is frightening for both of us. Osteopenia (precursor of osteoporosis) makes him more vulnerable to fracture and fractures in LBD (especially hip fractures) can be deadly. I notice he eats less, but his body has changed. His arms and legs are thinner…his waist bigger and his shoulders more hunched. He looks at himself in the mirror and growls “I look horrible”. He really doesn’t look horrible, he is a handsome man, but the changes are marked.

He seems happy to be listening to and contributing to the planning of our oldest son’s wedding next summer. He is very happy for that our son has found his soul mate, but adds, “I hope you go ahead with the wedding at our house even if I am gone”. I just look into to those beautiful green eyes filled with tears and can see he is serious and that he knows exactly what he is saying and what he wants.

I love autumn. If this is the autumn of our life together, I love it too although it is profoundly sad. In many ways we have never been closer. I can almost anticipate everything he wants and needs…he feels my pain in ways he didn’t 15-20 years ago. We hold each other and feel no embarrassment at kissing the tears off the others cheeks. Together we try to shake the dark hitchhiker Mr. Lewy off despite his long sharp talons and continue to travel this journey with as much grace as possible. We will use our resources for what is important to us, we will continue to hope and pray for the health and happiness of our family and friends. We will try to make our lives meaningful for ourselves and others. Despite sadness and the dark shadow that hangs over us, we will look for glimpses of the sun….I see it now…”You are my sunshine, my only sunshine”…I can almost hear my mother singing it to my father and then singing it at his funeral, I love my hubby and I love our life…he is my sunshine, Even if it is the autumn of our life together, I will take every opportunity to reassure him that he is loved by many and particularly by me!

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6 Comments
  1. Kay permalink

    What a beautiful, poignant description of your love and life. The tears flowed as I read this. Despite the terrible disease you live with every day, you are lucky to have one another and the love you share. Love, hugs and blessings to you dear friends. Love you both!

  2. Love you, dear heart. You and Greg are a comfort to us both…..always know that.

  3. Karen Ford permalink

    What a gift to have the ability to write so beautifully! Your life continues to follow the same pattern as mine…….just enjoying every “I love you”!

    • Thanks for following along, Karen. Wish this was spring….but in reality it is not. We will keep in touch.

  4. Susan Mazique permalink

    You are so right. Even with charges Gary is still a handsome man. Every so often the real Gary shows thru with a real laugh or a smile. Some how I have always loved sunsets,the colors are so real!!! Remember sunsets in the Southwest. Think about the ones you two have shared!!! Hold them close and share them with Gary!!! Love you both!!!

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