PAIN AND RELIEF

The day is crisp and clear and the rays of sun dance a peppy ballet over the soft white caps as they bob in and out of view atop the grand and glorious Hudson River. Meandering along the ragged shore I am consumed with conflicting thoughts and emotions. Colorado blue skies and Rocky Mountain Highs have nothing on the glorious Hudson Valley today. The beauty is breathtaking and a rare gift. The wonderful sunny day, the sparkling water, colorful sailboats and majestic Palisades framing this special place are indeed treasures. Walking alone with my thoughts, bundled up against the gentle breeze from the west, everyone and everything seems to be dancing to the same drummer. Life and beauty are in synch. Yet, I find myself sad and out of that rhythm. I need to force myself back into it.

My beloved husband has Parkinson’s, a progressive and degenerative disease with no cure. The previous slow advancement accelerates a little more rapidly with each passing month. As it continues to extract its toll, John goes deeper into his inner self to some kind of special place where no one can enter. He lives there most of the time now, by himself, and becomes 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 to some strange melody that only he can hear. We can’t begin to imagine what he is looking at or thinking. I guess in a way it really isn’t our business after all. We can only hope he’s thinking happy thoughts and enjoying pleasant memories.

When he was first diagnosed with Parkinson's seven or so years ago, abnormal tremors and slow movements only minimally influenced him. We used to laugh together and refer to his “Tim Conway shuffle.” We’d 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, 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 advanced from walking unaided albeit with shuffling feet, to a cane, to a walker, and finally to a wheel chair. Today he's unable to navigate on his own 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. Most important, I need to remember to give John a hug every day. I’m losing my perspective as John's disease progresses and I find myself more focused on what we have 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 ½ full instead of ½ empty! What is happening here?

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 will get better; that John would attempt to do more; that we would glide into a peaceful and content ending to a happy and fulfilled life. Lowering these expectations is hard and painful. Perhaps less painful if I am able to reprogram myself to expect little and take pleasure in the occasional hints of a smile or joy or some sort of momentary engagement. 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 occasionally will it generate a response of any kind. When he does talk, the thoughts are 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 then his eyes fill with tears. That damned veil is pulled down again over the windows to his soul. He looks vacant and confused and a few tears may flow and slide down his cheek. All I can do is give him a hug and sit gently and silently with him until he dozes off to sleep. I know 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 reality cannot be denied. Yesterday he asked me out of the blue.. "where are YOUR kids now?" "what are they doing these days." Only God and John know where he is at such 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 to, 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 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 chang

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 hope for the future is to trust the power of positive thinking. I resolve to be courageous and to grow and improve each day. I will be grateful for being able to look back with a smile 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, are 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 this wonderful man 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 for me is a faith in a merciful God who will walk with us through this journey.

I find comfort in putting my thoughts and emotions on paper. I don’t often get the opportunity to share them with others. If any of this is helpful to another, I am 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 this man with a passion and am grateful that I'm around to take care of him. I pray and believe it brings him comfort.

When John died a big part of me died along with him. He left his footprint on my heart and soul and I am terrified that I’ll forget the exquisite love affair we had for 55 marvelous years.

My beloved John died as he lived, peaceful and serene, surrounded by his loving family. We knew the end of his long struggle was near. His poor tortured body was beginning to shut down. He was tired and worn down by infection and weakness. He fought with great strength and courage until he had nothing left to give. He was finally ready to put his head back and say goodbye. And he did so with peace, dignity and acceptance - no twisting, no turning, no agitation, no anxiety.

He had been in and out of consciousness for several days. He knew we were all there with him as we talked gently and reminisced about the many good times we shared. I held his hand, gently stroked his head and shoulders, gave him ice chips to suck, and wiped his eyes and face with cool cloths. He would open his eyes, nod his head and smile at a special memory. It was about noontime on the day he died and someone mentioned there was soup in the kitchen if anyone wanted something to eat. He indicated that everyone should leave him and shooed them out with a weak hand gesture and a mumbled “Go – everyone.”

Then he reached out and pulled at my hand “No – not you – you stay,” he mumbled.

He pulled me close to him and I thought he wanted to tell me something. Instead he weakly guided me to him, chest-to-chest, heart to heart. He kissed me slowly and deeply as if we were new young lovers. His kiss was so loving, so sensual, so deep; so strong yet so gentle that it spread warmth and passion throughout my body. It literally took my breath away. He gently broke that connection, opened his eyes, and looked straight into the windows of my soul and kissed me again. We both knew we were saying our final goodbye. I gently stroked his face and he closed his eyes. I put my mouth next to his ear and said almost inaudibly

“Oh Johnny G, are you going to go and die on me?”

He nodded a careful slow and tender response.

I could only whisper softly …

“It’s O.K. love … I’ll be sad and will cry … but it’s O.K. … I’ll be O.K. You’ll be O.K. You can go my love … just let go … I know how tired you are … so very tired ... you’ve worked so long and hard for peace ... It’s O.K … I’ll cry … I’ll be sad … I’ll miss you every day for the rest of my life … but it’s O.K. … Go now … I’ll love you forever … now go and rest … you deserve it my sweet, sweet husband.”

He died that evening at 11:00 o’clock, very quietly and I think, untroubled.d. I do cry; I am sad; and I will always miss him.

He always said he wanted to be buried at sea and the kids and I determined we would honor his wishes. His body was cremated and we took his ashes to the ocean at Long Beach Island for one last visit to the sea he loved so much. Each of us carried a small container with a bit of his remains and stood together at the edge of the pounding surf. The never-ending waves washed over our feet and just as quickly returned to the sea again and again. It was a mystical, undisturbed moment to think private thoughts about this wonderful guy and the unwavering love connecting us to him. As we silently tossed his ashes into the pounding surf, we were filled with love and homage for this gentle warrior of a man.

We watched quietly as bits of his ashes were gently swooped up and carried out to sea by the ocean breeze. We had nothing left to do.

My comfort now? Perhaps death is not a sad ending —- it just might be a joyous new beginning.