Colorado blue skies and Rocky Mountain Highs have nothing on the glorious Hudson Valley today. It’s a crisp, clear, wonderful sunny day and the sparkling water,colorful sailboats and majestic Palisades framing our wonderful waterfront walk are spectacular. As I walk along alone with my thoughts and bundled up against the breeze from the west, everyone and everything seems to be dancing to the same drummer and life and beauty are in synch. I find myself out of that rhythm and need to force myself back into it.
John’s dreaded Parkinson’s is progressing more and more rapidly these past several months. It seems he goes deeper and deeper into his inner self to some kind of special place where no one from outside can enter. He lives there most of the time now, by himself, and is less and less communicative. He’s beginning to look like any one of the old men in nursing homes around the country sitting in his chair and staring out the window as he drums his fingers on the arm of his chair to some strange melody that only he can hear. We can t begin to imagine what he is looking at or thinking but I guess in a way it really isn’t our business. We can only hope they re happy thoughts and pleasant memories!
When he was first diagnosed with Parkinson’s seven or so years ago he was only minimally influenced by the abnormal tremors and slow movements. We used to laugh and refer to his Tim Conway shuffle and tell him to stand up straight and pick up his feet. We d walk along beside him and count off hep 2, 3, 4; left, right, and he d move right along. We knew Parkinson’s was a progressive and degenerative disease but we were always hopeful. Over the past few years he’s progressed from walking with shuffling feet unaided, to a cane, to a walker, and finally to a wheel chair. Now he’s unable to navigate on his own at all and is totally dependent on those of us who love him.
I know it’s time for me to go back in time and relax and “smell the flowers”. I need to laugh out loud at least once a day and get outside myself and see the world around me. I’m losing my perspective as John’s disease progresses and I find myself more focused on what we’ve lost than what we have. This is not like me as I’ve always been an Up kind of person. My glass has always been 1/2 full instead of 1/2 empty!
These last few weeks and months as things have deteriorated steadily have been an epiphany of sorts for me. I m realizing the hardest thing for me to give up is the expectation that things would get better; that John would attempt to do more; that we d glide into a peaceful and content ending to a happy and fulfilled life. Lowering those expectations is hard and painful but I need to reprogram myself to expect little and take pleasure in the occasional hints of a smile or joy or some kind of engagement in the moment. I can no longer expect him to respond or react to the things that used to please us both. His muddled brain seems to pick and choose only a very few things and only now and then will it generate a response of any kind. When he does talk, the thoughts are usually disjointed and hard to understand. He’ll ask if MY kids are coming over and when I tell him OUR kids are coming over he’ll smile and say good and then his eyes fill with tears and the veil is ! pulled down again over the windows to his soul. He looks vacant and confused and a few tears flow and slide down his cheek. All I can do is give him a big hug and sit gently and silently with him until he dozes off to sleep. He has vanished back into his own private universe where no one is allowed to enter. It’s hard not being able to share thoughts and feelings with him but it becomes easier if I no longer expect that privilege. I m grateful for whatever he’s able to give me. I fought giving up the hope for many months but it’s clear and present a little more each day and the reality must be faced. Yesterday he asked me out of the blue .. “where are YOUR kids now?” “what are they doing these days,” so only God and John know where he is at those moments!
Dying is a natural part of life but the slow deterioration of this damnable Parkinson’s disease and other dementia causing illness is indeed like a long slow goodbye. The sun rises and sets and the seasons come and go. Like the leaves on trees, when we’ve had our time in the sun we fall to the ground. It’s to be expected and is part of the natural process. It’s painful for us who love them so much to lose the brilliance of their spirit a little each day. We endure the loss a little at a time when what we really want most and feel so conflicted admitting is their peace and serenity. We want the pain and suffering to end and to help them get through this process of dying with peace and dignity. We re tired too and exhausted and worn down by witnessing their slow journey toward peace. We re exhausted caring for them and the gut wrenching feeling of loss we must face every day creeps up little by little. It could destroy us if we allowed it. We need to give ourselves permission to go on by ourselves while we still attend to their needs. We cannot allow the pain of loss to become so intense as to consume us. We can miss them, grieve for them, and never, ever get over the loss or forget. Or we can begin to move forward and remember the unique and wonderful years we shared. The worst part is the lack of companionship and the silence of their imprisonment. We will forever miss that sharing of intimacy and closeness.
Life is as consistent and eternal as the waves in the ocean, as the stars in the sky, and as the change of seasons. My resolution for the future is to trust the power of positive thinking. I resolve to be courageous and to change and improve each day. I will be grateful looking back as I try new things. I will meet new people, ask lots of questions and keep myself mentally and physically well and healthy. I will acknowledge that I and I alone am responsible for my well being. Only I can control how I feel. And because I want to feel challenged, respectful and happy, I will focus on the positive things in my life now and in the past. I will work every day to remind myself that my good fortune is in having had John as my partner and soul mate for so many happy years.
And most important to remember is that together or apart, we are only but a small part of this magnificent universe. And an absolute must is a faith in a merciful God who will walk with us through this journey.
I apologize for rambling on. I find comfort in putting my thoughts and emotions in writing and don’t often share them with others. If any of this helpful to any one, I’m grateful; if it’s difficult for anyone, I am deeply sorry. It’s been a bad couple of months and will probably not get a hell of a lot better any time soon. But I love the old guy, and am grateful that I’m around to take care of him. I pray and believe it brings him comfort even if he’s unable to express it very well.
Editor’s Note: Guest commentary foreshadowing the loss of a PWP.