Inside My Dad’s Shoes
There are some sad thoughts that come to mind for me when I think of my dad and Alzheimer’s. Changes. Helplessness. Loneliness. Trapped. Anger. Alzheimer’s made my dad’s journey lonely as he was trapped inside his mind, then inside his body. He was helpless to stop it. He could not control the changes.
My dad before Alzheimer's
My dad was a skilled tradesman by schooling and occupation. More specifically he was an instrument mechanic. He was good at his job. He was a very smart man. Alzheimer's robbed him of those things and much more. Alzheimer’s began after he retired. At first, it didn’t seem like he was trapped. He could still do so much. Dad’s body worked just fine for a long time. He could eat, he could drink, he could go for walks, he could keep up his personal care. He could carry a conversation. There were holes in some conversations but we assumed somewhat it was age related.
Very slowly, his mind began to shut down, to stop doing what it was designed to do. It was an unraveling of sorts. When the brain is affected, the body will follow. The devastation was beyond the physical. We had no real understanding of what the future would hold, how devastating this disease would be for him on so many different levels.
Walking a mile in Dad's shoes
I have tried to put myself in Dad’s shoes knowing I could never fully understand what his journey would be like.
The changes. Things are changing. Is it me? No there is another explanation. It’s not me. It’s age related. I’m too distracted. I’m too busy. Hmm, I can’t find my keys. Think hard. Oh yes, now I remember. Later on, I don’t remember. I need help finding them but I don’t think I need help finding them. Someone must have moved them. Of course, someone moved them. Oh. How did they get there? I don’t remember, no matter how hard I try. Everyone is telling me things I don’t remember. There must be something wrong with me. I can’t let anyone know I can’t remember things. I will fight back against those changes.
The helplessness. I feel helpless. Things are changing and I can’t control them. But everyone is telling me things that I don’t believe. I can still drive my car. Who is this doctor to tell me I can’t drive? You can’t take my license. How can you take my license, you don’t have that authority! Well...I’ll get it back. So Doctor, when are you going to give me back my license? You took my license. I’m ok now. I can never get it back? You can’t do this to me. Now I have to have someone else drive me. Well, I’ll make sure she knows what I think while she drives me places. Do it my way because I still know how to drive.
The loneliness. How come nobody understands that I’m still ok? My wife...where is she? Why isn’t she here with me? Who are these people in my home? I know some of them. Some of them look familiar. Some of them I don’t know at all. How come the kids never come to visit me? I’ll ask them when they’re coming. No, you weren’t here the other day. I still don’t know where my wife is? Who is this lady? No one I know is here. My mother has died? No. My sister has died? No. Where’s my wife? I am alone.
Trapped. My mind doesn’t work. I cannot do the things I could before. I cannot feed myself. I cannot bathe myself. I cannot dress myself. I cannot walk. I have to sit in a wheelchair. I want to get up. I keep trying to get out of the chair. I cannot recognize the danger in getting up. I fall again. I get hurt again. Now I can’t get up. I am trapped. Now I don’t even know I’m trapped.
I know my dad was 'in' there
Although I try, I could not possibly understand what was going on in Dad’s mind as it changed, as it degraded. I believed dad was still ‘in’ there right to the end but he was trapped. There was nothing we could do to free dad. He fought all the changes that were happening to him right to the end until his mind was so far affected that there was little to no cognition. We felt helpless but that was nothing in comparison to the helplessness I think Dad had to live with. He was lonely even with his loved ones around him. And I know he was angry. Who wouldn’t be?
My hope for others living with Alzheimer's
I know there are things in our lives that we have no control over and must journey through. If I could hope and pray for something, it would be that no one feels helpless, lonely or trapped inside their mind or body. My heart still breaks for my dad and for others who are going through this devastating journey.
But this is Alzheimer's and it sucks.
Do you find legal and financial jargon in dementia care confusing?