As some of you may know, I have decided to take that step into attempting to write a book. While there are quite a few books about Alzheimer's out there, I don't know of any that are about someone being diagnosed as young as 36, nor a family who had decided to care for their loved one at home until the end. The combination of those two unique issues helped me decide that our story should be told.
For the last few months, I have been collecting my thoughts on a tape recorder. I sometimes find my self rambling about one issue or another and it's only then do I realize all that we have been through as a family. Some painful memories have taken up residence in the recesses of my mind, which I can only assume is my mind's way of coping. Thinking about diagnosis, hospitalizations, set-backs and fears made me realize very clearly there are unsung heroes that don't get the full attention they deserve.
They are.....COURTNEY and BRANDON.
Do you remember what you were doing when you were 7 & 9 years old? Our children were being told that their dad "had a disease in his brain that may cause him to do funny things. He may forget things, or act confused, but he will always be their dad". They were being asked to understand a disease so many adults don't understand. They were asked to help out when most adults ran away. Mike functioned pretty well until 2003/2004 - when Courtney and Brandon were 9 and 11. What were you doing at that age? Going to friends houses, parties, being a kid? Our children were asked to help put their dad's shirt on, lead him to the bathroom, cut up his food, tie his shoes - all the things that a dad is supposed to do for his children. I will not say that Courtney and Brandon missed out on everything, but I WILL say they missed out on alot.
At this time Mike was beginning his anger/agitation stage. I remember the four of us in the supermarket. Mike began to get agitated and confused with all the bright lights, music, people talking etc. With a cart full of groceries, Mike started yelling and becoming combative. We got alot of stares from strangers. Instead of our children retreating, they helped me control the situation. Courtney took Mike outside to the car to keep him calm, while Brandon helped me pay and bag our groceries. It was after that outing that I decided Mike was no longer able to go with us anymore, It wasn't worth him getting overwhelmed, or the kids being embarrassed. Strangely enough, neither one of them was embarrassed, but Mike's days of going with us food shopping were over.
This leads me to to next obstacle. Because Mike couldn't go many places, and someone had to be with him most of the time, Courtney and Brandon couldn't go many places...unless of course a kind friend offered to drive them somewhere. They never wanted to ask their friends for rides, they didn't want to feel like a burden, so instead, they missed out on alot. Something as simple as meeting with friends at another friend's house, was impossible unless they got a ride. Going to the movies, parties, it was all the same.
As the kids got older, and Mike's disease progressed, their responsibilities with their dad changed. Now they were feeding him, bathing him, shaving him and help with changing his diapers. Is that something you did when you were 12 and 14? Did you spend countless hours after school in a hospital room wondering if your dad would survive another medical issue? Were you more often than not, dismissed by professionals who thought you didn't know what was going on, just because you were too young? Would you be able to keep up good grades (mostly A's and some B's) while your life was turning upside down? Courtney and Brandon did. They excelled in High School despite all that was going on at home. When I think about the nonsense that most teenagers complain about in their life, my heart breaks. My children have gone to hell and back and very rarely do they ever complain. They are NOT PERFECT, they fight with each other and that does cause some added stress on me, but I am glad they can still act "normal" in the face of all the "craziness".
When you were a teenager, were you aware of mortality? I remember back to my youth and specifically being asked to write a paper in English senior year, "If you had six months to live, would you want to be told"? It was a lesson to make us think about life and the pros and cons of knowing (or not knowing) when we may die. That was probably the first and last time I thought about death. Courtney and Brandon have been dealing with their dad's terminal illness for almost 11 years! They lived through the horror of Mike being given Last Rites and going home from the hospital that night thinking they were never going to see their dad again. Most kids that age are lucky enough to not have to think about these things. My children do.
Courtney and Brandon are my unsung heroes! Their childhood was destroyed by Alzheimer's Disease. The only clear memories they have of Mike are from early in his diagnosis. He never made it to their Confirmations, Graduations. He never got to teach them how to drive and he surely will not be at their weddings.
Courtney and Brandon definitely inherited the best part of Mike. They are caring and loving individuals who look for nothing in return.
THEY ARE MY UNSUNG HEROES!!!