I could hear his last words echoing in my ears as I hung up the phone. "Holy Shumoly," he said with an upbeat anticipatory voice. He had just learned of our plans to have a family get together at our favorite Aunt Patty's on this upcoming Saturday for the first time today. And he is as excited about it as he was when he learned about it yesterday. This is good news. It gives him hope every time he hears it.
As I relayed in an article recently published at http://practicalalzheimers.com/which-bill-will-we-get-back/, we've been through some very intense ups and downs in our journey with Alzheimer's. One of the very difficult questions I have had to face is, did I do enough? And then he said there was a cure.
I've been approached by many well meaning and hopeful individuals who have shared products that offer miracle results such as slowing the process and even claims for stopping the process. My reasoning in the past to dismiss these well meaning individuals was based on my appall of Bill lingering in his current state where he remembers just enough to cause him to suffer grief for all that he has lost. I've seen myself as being there to help him feel safe as he goes through the transitions until he is, in my hopefully mind, finally at peace in his mind. If Bill could just forget that he forgets he would be so much happier from my perception. He grieves not being able to work, to teach, to be at home with his family. We go as often as we can, but even minutes after we leave (or if I move away for a bit and return) he has forgotten I was there.
This sick, suffocation begins to drip from my head, down my shivering spine, and deep into my gut. I wonder if I will ever feel relief from the heat that is rushing me.
Which Bill would we get back?
Or would we get the restless, caged, angry Bill, confused with all the change, the loss; angry at the world. Could we really understand the monsters he would perceive in his world?
Shortly after the diagnosis, I moved my family to back to my origins in Kansas. I love our life in Michigan, but caring for Bill was becoming far too much for me there, alone. Bill was showing signs of progression in cognitive loss (early onset of Alzheimer's). We were experiencing changes in personality. More violence and emotional upheaval began to emerge. We both were experiencing loss of career in order to move closer to family for support, violence as the disease progressed and financial loss. I was trying to find my own identity again, trying to be both mom and dad, helping my son sort through his grief, etc). He had major personality changes and became very jealous of our son. We were coping, but I decided to move us back to Kansas so my son could be surrounded by our family. As for my spouse, it was a scenario where I thought I would be able to handle him at home for the rest of his life.
Then the unthinkable happened. He refused to take his medications. We were turned down for help by psychological professionals, veterans groups, and law enforcement; literally everyone. It was a treacherous and unbelievable experience. I was advised to remove myself and our son from the family home until we could get help.
Bill had friends step in and assisted him in filing for divorce. They placed a restraining order on me. Two days later, I received a letter from the district attorney to return home or to be prosecuted for abandonment. I couldn’t believe what was happening.
Thankfully, adult protective services and a wonderful attorney helped me have Bill assessed and placed in a nursing home.
The state then stepped in and reversed the divorce (my head was spinning) and instated me as Bill’s guardian.
I am now rebuilding my life. While I am court-ordered to be his guardian, I have made the choice not to abandon him. He has no memory of all we went through. I am trying to be the kind of wife I would have wanted in a spouse.
I am working through my fears. I know I have to give him the opportunity to be whole again.
If a treatment emerges that really does work, I guess we’ll see which Bill we get back.