 |
 |
I am forwarding this on behalf of Joy Graham Dear List members This is my second attempt at sending this. Many of you have written of your love and admiration of Peter Kidd. I mentioned this article which Peter wrote for me - the idea was that I would publish it in the WA Parkinson's Association Newsletter. However, I felt it was so good that it should go to the National Magazine, and I was waiting for them to find the right occassion to use it. It has not been used anywhere, and this was a great pity, because Peter did not have the opportunity to see it in print. I do know that writing this article helped him to come to terms with the loss of Moira. I do not know if his sons ever saw this article, and since I have not heard from them, I am going to send it to you all anyway, with a copy to Peter's old email address which I hope is still operational. I hope it may help them to come to terms with the loss of both their mother and father. Sincerely Joy Graham (Perth WA) From: "Peter Kidd" <[log in to unmask]> To: "Bob & Joy Graham" <[log in to unmask]> Subject: Cargiver article Date: Mon, 19 Jan 1998 12:10:55 -0400 Hi Joy and Bob, Here is my attempt at pulling some thngs from my brain about cargiving and Parkinsons. It is still not exactly what I want, but the idea or message is fairly simple in reality -- caregivers may only come to really understand their role after it is too late. It really is a three-way partnership. As I said earlier, feel free to edit, cut, delete or reject (if it does not suit your needs). Best to you both & TTFN Peter ============================== Afterwards: A Caregiver's Sense of Loss by Peter Kidd My wife, Moira MacPherson died of cancer on April 17, 1997. She had Parkinsons for 18 years. Almost nine months after her death, I am still coming to terms with my sense of loss. I write now in part to try to understand it all better, but also to share some thoughts about caregiving and Parkinsons. I have been trying to sort out why my sense of loss is so deep and so fundamental. I realize, of course, that the loss of any loved one is always a difficult challenge. I try to remind myself that I am not the only person to grieve. It is part of the human condition. I have a suspicion, however, that Parkinsons and my role as a caregiver added a dimension to my grief. (Perhaps this may be true of all chronic illnesses.) Before going further, I should raise a caveat for the reader. In one crucial respect my role as Moira's caregiver was somewhat different from most. I was Moira's primary caregiver, her husband and partner for only eight and a half years of her Parkinson life. Moira had been married previously and was a single mother with two young boys, Kelvin and Cameron, when I first met her. We fell in love and were married in 1989. So, I came to Moira and Parkinsons quite knowingly. For most Parkinson caregivers, the condition arises at some point during the relationship and poses some unique problems that I probably never experienced. Nevertheless, Moira did forewarn me about what her future with Parkinsons meant. I as not naïve or ignorant about what was to come. However, the depth of discomfort, the frustration and the pain of advancing Parkinsons can only be understood as it happens. In this, all caregivers share a common experience. My life with Moira came as the condition began to drastically affect her quality of life. Moira often needed help to turn over in bed, to get dressed and undressed during severe 'offs', and to have help to get going during freezing spells. I massaged her neck when she suffered from extreme dyskenesia,. I comforted and held her during frequent panic attacks. I tried to understand what was happening to her during a hallucination. I assisted her during bad bouts of constipation. I tried to support her with encouragement when her meds just refused to kick in. I had to deal with my own frustration and anger at her when she was stubborn or angry with me. I had to cope with my own sense of failure and guilt when I was tired or busy with things I wanted to do. Every caregiver knows all of this and more. In May of 1995 we travelled to Loma Linda in California where Dr. Iacono performed a very successful bilateral pallidotomy. We both felt that the calendar had suddenly been turned back ten years. Moira's meds now began to work again and she had much more predictable "on" time. More importantly, she could be spontaneous again. Spontaneity is a highly undervalued part of our lives and it was a treat to see it returned. A little more than a year later our lives were turned upside down. Bowel surgery in August 1996, revealed a malignant tumour of the colon. Worse, it had spread to the lymph nodes. Moira's strength and bravery during the next eight months of chemotherapy was incredible and served to give us the determination to be no less strong. She died very peacefully. We know she is still with us, but has now been released from her Parkinsons. In the months following her death, we had tremendous support from friends and family, and especially members of our Parkinson family. Dealing with grief and loss is not easy in any circumstances. It is not easy dealing with the loss of a partner. Moira made me more than I am. Parkinsons was very much part of that as a third element in our relationship. We lived with it. As Moira's caregiver, I believe I came as close as humanly possible to understanding what Parkinsons meant to her and how she managed to cope with this terribly handicapping condition. Our years together were incredibly busy and full. Moira's determination to know everything she could about Parkinsons was an inspiration to me and many others. We became a team. Whether it was working with the local support group, promoting awareness, lobbying for Parkinsons or communicating her knowledge to ordinary Parkinsonians, we were in it together. We had other parts to our life, of course. Moira's two boys were growing up and needed our time. We also shared a deep concern for the environment. Moira was always sad and moved when she saw needless and senseless harm being done to the world she loved. It pained her as much as her Parkinsons. I was not a unique or special caregiver. I had the same successes and failures and sense of guilt (whether legitimate and ridiculous) that all caregivers seem to have in common. I marvel still, when I attend our local support group, at the patience, generosity and loving care of the wives and husbands, daughters and sons, mothers and fathers, and friends and partners of Parkinsonians. It is a tremendous testimony to the enduring oodness of human nature. Chronic illnesses seem to require something more. We know, too, that caregivers need support. Here in Halifax, as elsewhere (including on the Internet) caregiver support groups have sprung up. Sharing the burden, voicing common concerns and problems, discussing the often simple solutions, and giving much needed respite time are all very important functions of these groups. o, what does Moira's death mean to me as a caregiver? If I had been asked beforehand about what I would feel if Moira died, and if I was able to be utterly frank and candid, I might have anticipated profound relief and a sense of release. A huge burden would have been lifted from my shoulders. I could now do all of the things that caregiving had prevented me from doing. Certainly, this would be a very natural and human thing to feel. Or so I might have thought. But, the reality has proved to be very different. I have had no sense of release or euphoria at being freed from a burden. True, in the months following Moira's death, my life did change. Moira's two boys are rapidly maturing into young men and have rallied tremendously in support. I no longer have to rush home fearing that Moira might be alone and in trouble. I no longer had to help her get to the bathroom when her meds just would not work. I no longer had to worry about how we would cope when the debilitating symptoms inevitably returned. I no longer had to do all of those things Parkinson caregiving brings. The sense of loss is very deep. I feel it is deeper because of Parkinsons and because of my years as a caregiver. In a curious way, I still see myself as a caregiver. It is part of my grieving. Caregiving gets hold of you and in the process deepens your relationship. Although caregivers are frequently tempted to feel guilt because we sometimes fail to measure up, we should give ourselves credit and take comfort for what we do accomplish. As a caregiver Parkinsons makes you more than you are. There is real greatness and humanity in caregiving. I came to understand this only after Moira had gone. ************************************************************************** Peter Kidd Learning Materials Consulting Services 62 Coronation Avenue, Halifax, Nova Scotia B3N 2M6 Canada Tel/FAX: (902) 443-4262 Email: [log in to unmask] URL: http://www.chebucto.ns.ca/~aa163/peterkidd.html