It came on slow, this madness, this unreal new normal. That is what they call it, “new normal.” They, the smart ones, the people who think they have arrived at this enlightened spot, call it new normal because that is how they cope. It is easier to coin an expression for a disease or a disorder so that we can sleep better at night; it is how we get through things in this Oprah age. We all strive for enlightenment with our Tolle’s on the nightstand, Dr. Dyer inspirational quotes on our Kindle and meditation in the morning with Deepak. But what does it all mean? Why does my father forget me? Why is he so tired? Why am I so angry?
At first we thought he was faking it, at least I did. And then the stories came out. Everyone in my family had a different story to tell; and the stories were not all pretty. For some reason because were are all brought up on fairytales, we think that is the way our lives will ultimately be. The circle of life includes: mom and dad getting married, having lots of kids, kids moving on and doing the same, mom and dad retiring as empty nesters and then they happily fly off to Florida in the winter. In our story, everyone laughs and sings and remembers nothing but good times and the bad times are long forgotten or swept under the rug. But then a wrench is thrown in to the fairytale and someone – the patriarch – gets sick. No one knows why really, but we speculate and we speculate some more. The ending of the story may not be a happy ending and we begin to play the blame game. We start to remember the bad things in the fairytale as if that might be the reason the father is sick.
I wrote a play about my father as a strong and capable hunter and man of the woods. He will never see or read the play now. It showed him in a good light, almost on a pedestal. I am glad I wrote the play then because lately I am feeling very different about him. I am being honest when I say his illness irritates me. I am angry that he is sick because he is not himself. He is not the warrior that I thought he was. Every day I struggle with this human side of me and my lack of compassion. I know it is wrong and I also know that I will come out on the other side of this with a clearer understanding of dementia and with my compassion fully intact. But I really do not want to sugar coat this. It is time for honesty. I do not want to pretend there were not some very bad things that shaped who I am and sent my anger into a slow burn.
I would say my childhood was good, but there were things that could have been better. It is so easy to gloss over the uncomfortable, questionable times. Deny, deny, deny. Then it will all go away, for a time. But denial will then come out in different ways. I think it can even come out in the form of sickness, sadness, anxiety and even disease. When we appreciate the mind-body connection and when we learn to forgive ourselves we can move to an enlightened space, but it takes time.
Perfect timing occurred for me when I enrolled in an eight week course on hospice and palliative care. My father had just moved into a facility because my mother found she could not care for him herself. So, while my father settled in to his “new normal” and my mother to hers, I learned to forgive and accept and celebrate a life that was.
The journey continues on a daily basis. Do we ever reach the destination? Perhaps not. I speak to my mother every day about the weather, her life alone, and my father. Now, as I write this he is fading, he’s grown thin, a shadow of himself. My mother is strong and she hides the devastation and sadness of this. She is lonely already, and her house has become too big, too haunting. But she does not complain; that and her children will be her legacy. She accepts and moves forward even though the world she knew is crumbling.
I call my mother every day because I have grabbed hold of her lifeline. I try to steady her from a distance and carefully breathe air into her lungs. I don’t know how she will breathe when he takes his last breath. I don’t know how it will even be possible for her to wake in the morning, but she will. And I will call her. And we will talk about the good times, the profound moments, the man who was her best friend and the love of her life; the man who she says “could do anything,” the man who adored her and who would always light up when she entered the room, even after he had forgotten his children.
Dementia, the slow burn into oblivion and we are all left behind. The challenge is to remember the good times and accept what is. If you cannot remember your own “good times” remember them for her and tell her that it was perfect, tell her that her life with him means the world to you. Tell her that you loved the man he was, with all his imperfections and flaws because his love for her was like a fairytale, a perfect dream come true. And then she won’t hurt quite as much, the pain will eventually subside and she’ll know she has done something spectacular with her life; she’ll know that she made good and honorable children who really loved their dad – her forever husband.