The Worst Part of Alzheimer's

Last night as I was drifting off to sleep, I was thinking about the worst part of being on the Alzheimer's Journey with Gregory. At first so many visions assaulted my mind that the answer to my own question was one of numbness. The losses? The frustration/confusion? The sorrow/loneliness? The joys/sorrows? The inability to understand, and at times even to know how to understand the trajectory of the disease?

Then, like a flash, the answer/insight came to me: Life. Living. Being alive ... that was and is the worst part of the Alzheimer's Journey. 

"To be alive is to suffer" according to Buddhist understanding. In part we long for something, feel pain and loss in our lives, look for stability and predictability. We want things to always be the same, the good life; but in fact things change and what is ... is ... and it is not always good. 

Our lives are defined by dissatisfaction. We want better and we want good. Those are not bad expectations but it is not possible to hold on to them forever either. So dissatisfaction is how we deal with the reality of being alive. Things change, things are not always good, everything dies. Everyone changes, everyone dies. Dissatisfaction arises out of our own ignorance of our reality, wanting it to be something other than what it is. Our longing, craving, thirsting is what dissatisfies us as does the changing of our reality.

The study of Buddhism tells us that if we are able to sit with our dissatisfaction, look closely at the reality of life, live in the here and now; we can learn to accept this human dilemma and live wholeheartedly in the here and now, in the face of impermanence, knowing that some day we are all going to die, and that is part of life. We can increase our tolerance of instability and change and learn to appreciate today!

We are different people than we were when we went to sleep last night. We will be different people when we go to bed tonight than we were when we woke up this morning. These differences, at the basic level, are due to sloughing off cells and growing new ones. These differences are also based on our experiences as individuals: what was done today, what was seen today, what was heard today, what was said today.

These differences are what make life and love interesting and vital and in turn make relationships interesting and vital. There are failures and there will be successes. There are illnesses and there will be wellnesses. There are problems and there will be solutions. There are arguments and there will be "making ups." There are tears and there will be laughter. There are sorrows and there will be joys.

Even armed with this knowledge, I so still lament not being able to hold on to the physical interactions which Gregory and I used to have. This part of Gregory's death has been the most difficult part for me to let go. I want to kiss his lips, look into his eyes, smell him, tell him in person that I love him. I want to hold his hand, talk with him, share, hear his voice, walk along the beach together. I want to buy things for him, cook dinner for him, get him flowers and dark chocolates.

But those things can only exist now in memories and when I visit those memories, at times, I panic at the finality of these physical interaction losses. I want to hold on to them and not let them go but that is not within my control. Death arrived, in Gregory's case bringing completion and peace for him as well as for me. In my case it also brought deep grief for the change of a deep love, and is a constant reminder that nothing is permanent. Everything changes! The love has not been lost, but is has changed.

I have learned to "be with" Gregory physically in new ways: I talk with him at bedtime. I still bring him flowers and chocolates (which I eventually eat.) I acknowledge him as I pass his photograph which sits with his shrine in the bedroom. I sound a Tibetan Prayer Bowl to say hello. And periodically I dream about him. 

In my heart I celebrate holidays with him. I buy myself little gifts from him (which I used to do with his permission while he was alive.) I tell his stories and I tell our stories. His name lives on with family and friends, at Chicago Children's Museum, in my blogging, in the More Than Ever Education Fund, in the documentary Alzheimer's: A Love Story which has been accepted to over 75 film festivals worldwide and has won over 35 awards including two from the most prestigious American Pavilion of the Cannes Film Festival. 

So to be alive, to live, is to encounter changes including the ones death brings, including the ones Alzheimer's brings. We will all die. That is not a profound statement. We will also live and hopefully learn to accept that everything changes, that the reality is that we cannot hold on to things permanently, hold close for ever anything, except in our memory while we still live, and that is profound.

Living with Alzheimer's teaches that lesson so well and if you do a good job of giving and receiving unqualified love during the journey you will survive. You will suffer but you will survive, until it is your time to move on. 

In some ways the most important part of the story of Gregory's and my life together is what happens between the lines of: Gregory was born. Gregory lived. Michael was born. Michael lived. Gregory and Michael met each other. Gregory and Michael loved each other.  Gregory lived with Alzheimer's. Michael chose to walk the Alzheimer's Path with him. Gregory and Michael continued to live and to love and received many gifts of understanding from each other. Gregory died. Michael grieves but continues to live. Michael will die. 

That is the reality, so why waste time being dissatisfied? You are doing everything correctly. Be forgiving if you back-step knowing you will again move forward. Observe, acknowledge, accept your reality, and get on with the miracle and joy of being alive, no matter what it may bring!