Six words.
“You have early onset Alzheimer’s Disease.”
It only took six words to immediately and irrevocably change my family’s life.
After almost a year of searching for answers to why my 48-year-old husband was forgetting basic things like what day it was, whether he took his blood pressure meds, how to get to the feed store we had been shopping at for years, there it was – Early Onset Alzheimer’s Disease.
We are struggling with coming to terms with this diagnosis. Reading every book we can find. Searching every website available. Asking questions of all the professionals available to us. Still, we know the two most important questions of all can’t be answered.
Why him?
How long does he have?
David does not have a family history of Alzheimer’s. So the best the doctors can determine is that his Alzheimer’s may be due to the large number of major concussions he has sustained in his lifetime. Traumatic Brain Injuries can cause lasting damage. Seven TBI’s build on each other, limiting the ability of the brain to fully heal. Currently, there is no medical test that will tell us whether all his head injuries have brought on the AD-like symptoms and brain atrophy. The only way to know for sure is through a brain autopsy.
No matter the cause, he will progressively lose his memories, his ability to think clearly and his ability to care for himself.
Other conditions he has had for years like depression/anxiety and insomnia will also worsen. At this point, his symptoms are so bad that he won’t be going back to work or driving a car, again. There are no adequate words for the fear, anger, frustration, and worry that is going through all of us. Our kids are young. They have their whole lives ahead of them. Will he be here for their graduations, weddings, grandkids? And even if he is, will he still know who they are or why we are celebrating?
Many times at night or early in the morning when the kids are still in bed, we talk about things like what they might be when they grow up or how we want to expand our family farm. Now, our conversations include things like possessions he wants to sell or save for the kids and his ongoing plea that I, please, no matter how bad it gets, never put him into any kind of living facility.
My heart is breaking for him.
For the life as a farmer that he hoped to retire to. For all of the years working for a company that never appreciated him and took him away from us so often. For the beautiful music that he no longer remembers how to play. For the grandkids, he may never meet.
My heart is breaking for my kids.
For having to learn, first hand, what this disease is. For having to watch him change from this smart, witty, loving father they have always known. For having to grow up faster than they should to help me care for him. For having to think about what life might be like without him by their sides.
My heart is breaking for me.
For the decisions and responsibility that will soon fall on me. For the lost dreams of traveling together. For the loss of a partner and friend that I thought I would grow old with. For having to find a way to love our kids enough for both us.
My heart is just breaking.
Editor’s Note: To learn more about the conditions impacting the author’s family, please refer to the links below.
My heart goes out to you. I hope you are also getting the support you need during this time and the future.
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