Tearless Testimony

I don’t cry much any more. I can tell our story without so much as a tear. It just is what it is. I explain the facts: the history, how we found out, the testing, the continued medical challenges, the medications, and our current plan. Each subtle decline brings a deep breath, a momentary tear, and some heart ache. Then I say a quick prayer, refocus, and keep going.

I shared our testimony with a young lady that I met yesterday. She asked me how I do it. My answer: “I have deep faith, and I am determined to make every day count. I am determined to find joy, and to make him happy. If he wants to go to the coast every day for a walk, drink boatloads of coffee, and eat sweets for breakfast, he can. I want no regrets at the end, whenever that may be.” She cried and I felt terrible. I didn’t mean to make her sad.

“How’s he doing?” is a common question. It’s hard to answer that one. It honestly depends on the day, the minute, and the hour. One day, he is sitting in church with his fingers in his ears, rocking back and forth, or standing in line at the grocery store flapping his hands and stuttering, while staring at the lights. The next day, he’s running power tools and doing a great job. One day he is running electrical wire in the basement. The next day, he can’t figure it out for the life of him. Yesterday he was mowing lawns at the farm, and started out strong. By the time I got back from running three errands, he was a hot mess. He couldn’t come up with the words he needed, couldn’t give me eye contact, and he looked terrible. He isn’t sleeping again so his eyes are a mess. He looks exhausted. It’s the dementia. It is common for people with dementia to be up all night wandering. He’s not wandering, he just isn’t sleeping. He lays there and stares at the ceiling, or watches every minute of every hour turn on the clock in the corner of the bedroom. We’ve tried Tylenol PM, Melatonin, Essential Oils and he is mostly decaffeinated. Nothing helps for long.

“How does he feel? is another common question. He complains that his head doesn’t feel right. You know how you hold down on the camera button when you are taking a picture, and it takes multiple pictures really fast? That’s what it feels like when he turns his head. He said he has to move it slowly because he just wants the camera to hold still. He is often head achy, despite Botox injections every three months. The rotator cuff is still torn, but he cannot be medically cleared to have it surgically fixed. So I took a half day off from school for a ten minute appointment with the specialist, to which we returned with a list of exercises to try. He is tired, and he is frustrated that his stamina has decreased. He can only work in 2-3 hour increments before being absolutely exhausted. He misses his active life when he saw people, which is strange, because he mostly likes being in the quiet of our home. It is familiar and feels safe. Going out into the world is terrifying, even if it is to the farm that he lived on for 25 years. It is a strange disease. He misses people, yet he prefers to be left alone.

“Is he safe to be left alone?” is another common question. The answer is “mostly yes”. The problem is that you never quite know when, where, or how things are going to change. He has poor judgement. He thinks he can do everything that he has always done. I liken it to a car. The car looks great. It’s perfect on the outside. BUT, it can be glitchy. It can cough a little, sputter, or catch during a shift change with no warning. It can flash every light on the dash and quit, but it always looks good on the outside. That is how dementia is. You cannot plan for what is going to happen moment by moment. He may “look great”, but that is not the part that is sick. As a result, we made the decision to move our daughter and her family into the basement so that I could go to work without worrying, and he could stay home as long as possible.

We are told that the dementia is progressing quickly, which seems weird, because he truly has more good days than off days. He is mostly home where he is happy. He does what he wants and is enjoying the company of our daughter and our granddaughter during the day. He putters and she keeps a watchful eye from afar, because “I am a grown man and I don’t need a babysitter.”

To make him happy, makes me happy. Maybe that’s why I rarely cry any more. I have chosen to be joy-filled, by focusing on all the wonderful times we are having, and have had together. My desire is to be his memory and to tell him about the people, places, and adventures that he has forgotten, even if over and over again. We “became one” 30+ years ago, and I am determined to share my heart, my soul, and my mind with my favorite man until the day the Lord calls him home. I love him so much.

 

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5 Comments

  1. Your spot on. Your doing a great job leaving him alone is tricky. I never realize what my hubby was doing until I retired. I know your young so that’s not an option. I am glad you have a daughter that is looking after him even though its afar. I always use to say he has more good days then bad so keep saying that. My hubby is a picture of health and looks it but most of his body parts don’t work anymore. It was devasting when I had to put him in a facility but he is where he is loved and cared for. I am still his caregiver but mostly his wife now. Bless you and love to you and your family.

    Liked by 1 person

  2. In 2009 when the unbelievable happened and my husband had seemingly lost memories overnight, I was devastated. How did I miss it? When did it happen? Once testing, doctors, second opinions, third opinions, shock, tears, denial, studying, reading, trying to fix it, I finally broke and knew I had to move forward for my husband. I likened it to a war and I had to surrender before I became a casualty. It was a surrnder in a begrudging way at first. I knew that whether I realized this or not, Parkinsons with LBD had been part of our lives since we said “I Do”. I recently left a job I loved to take a position closer to home where I can apply my skills and work 7 minutes from home in the event I have to be home quickly. I am lucky to have been introduced to a support group of new friends with Atypical Parkinsons and my husband looks forward to seeing people who experience a journey not unlike his. There are stories, experiences, laughter, sadness, changes and sometimes tears and best of all, as we move forward, my husband looks forward to spending time with these amazing people.

    Liked by 1 person

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