“Do you remember when your mother died?”
I found this to be a particularly troubling question since my mother was sitting in the next room.
“Dad, what makes you believe that she has died?”
I am still naïve to the appropriate protocols. I know that challenging one’s reality can create greater stress, so I choose to ask questions. I ask him about the nature of her death, where it occurred, etc. Naturally, there are no answers to these questions. When he has no memory of the specifics, I ask him if he finds that odd. I also ask about why (if it happened so long ago) I would not know anything about it. Wouldn’t my sisters also know?
“You know how you told me that you get confused sometimes. Is it possible that this is simply a part of that confusion?”
“I know what I know and you can believe what you like. Some things I KNOW.” His eyes turn black and are filled with fury and hate. The energy in the room literally shifts. I change the subject, but I feel sick inside.
My father had four strokes last year. The brain scans showed no permanent damage. Aside from the necessary physical rehabilitation, the memory issues were nothing that caused great alarm. He would forget what things were called from time to time, etc…and so do I! They were all things that were understandable (things that the brain could regenerate and manage with time and effort).
The initial physical rehabilitation was slow and taxing. My father is a stubborn man (and it is not the kind of stubbornness that aligns well with a determination to overcome physical challenges). He took long term disability from his job and (after returning to work for a few days once he was physically able) he decided that it was time to retire. He worked in Compliance, so an inability to focus and memory challenges were not conducive to performing well in his work.
He knew that he would need a focus for his energy, so he decided to be a volunteer delivery driver for Meals-on-Wheels. It only required one day of commitment per week to start, so every Friday, he delivered the meals on his assigned route, happy to be of service in some small capacity. For that one day every week, he had an obligation; it was a comfortable routine.
Then, one Saturday morning, he did not remember how to dress himself. He could no longer walk well. He asked when he was going to be able to go home. He became convinced that his wife of 53 years was a woman that has been hired to care for him (and he was not happy with the selection). In the course of 24 hours, his ability to manage many of the normal tasks and responsibilities of his life were no longer within his capacity.
No more driving. No more Meals-on-Wheels. No more autonomy.
It has been four months and there has been no official diagnosis. My mother and I have concluded that he has vascular dementia. This is apparently not unusual in Type 1 Diabetics like my dad. It can appear suddenly, with little warning (often after a series of tiny strokes in the sleep).
If you do not ask the right questions, you would never be aware of my father’s condition. He has logic. He reads the newspaper every day. He will discuss current events and even correctly answer “Jeopardy” questions and solve “Wheel of Fortune” puzzles. He simply appears like a frail, old man (much older than one should for the age of 76).
He knows me when I call. He knows that I am his son. He knows everyone when they call. He has no difficulty identifying friends or relatives by sight or voice--except for my mother. He calls her by name, will refer to her as “your mother” when speaking to me and will act as if she is his wife in every capacity (except in sporadic instances when they are alone). In those moments, he will tell her that he is going to put her out on the street and that she has not fooled him like she has managed to do with everyone else.
At times, he becomes angry and threatening. The intensity of his acrimony is palpable and frightening. There is a bubbling rage beneath the surface that sometimes comes spewing out without warning. I am frightened for my mother.
It’s all so new. It is all so unexpected (as these things always appear to be when they show up in YOUR life). It is the “new normal.” I do not know what to do with it. I have done the reading. I have spoken with the incredibly kind and resourceful people at the Alzheimer’s Association. I have identified multiple potential resources for potential support and care.
My inclination is always to fix, solve and untangle. I see the nature of a problem, the contributing factors, effect on the “big picture” and create strategies to produce the desirable alternative. It is my gift and my work. I am very good at it. This challenge is beyond my current capabilities and way outside of any level of perceived comfort.
I am angry. I am frightened. I am sad. For the first time in my life, I am able to see the potential ending to chapters, rather than the beginnings of new stories that I wish to live.
This is an outcome that I cannot control. I find myself aggressively asserting myself, directing my mom in an attempt to move things effectively to a desired outcome. At times, she simply needs compassion and a level of emotional support that will enable her to believe that she is not alone. I cannot give that to her right now. If I open that door and expose that vulnerability to her, I fear that I will be unable to be of service to anyone (including myself). In my mind, one of us needs to be strong, logical and directed. So, I propose alternatives, actions, strategies. I push. I push when I know that I should not even speak.
I must surrender. I must find a way to be at peace with the uncertainty and seemingly unjust developments that are now my life. I must refrain from trying to control my mother’s actions in regards to her choices and my father’s condition. I must be present, to listen, love and truly support her when she needs it. That is the strength that she needs.
I must be willing to accept that the father with whom I had become accustomed may never return. I must be willing to accept that the connection that I desired with that incredibly difficult man will most likely never happen. I must be willing to accept that a man that resembles and shares his mannerisms is still physically present, but his personality may no longer be accessible. I must be willing to accept the departure of the man that was, to make room for the one that is still present.
I must be willing to accept the truth.