I heard from a mutual friend that Doreen had been diagnosed with familial Motor Neurone Disease. It was a shock, not only because I had never heard that her mother and sister had died of the disease but because only two years earlier my dear friend Kate had died of the familial form of MND. I sent Doreen a card expressing my concern. Kate and Doreen were two very different people and I hesitated to interfere as Doreen had three daughters and a wide circle of friends. Doreen rang me and we had a long conversation about the disease and her prospects but I didn't mention Share the Care.
Doreen's response to her diagnosis was to book a Russian river cruise for herself and a friend! She bought a "wheely walker" in red because the trip was to Russia and a pair of gold shoes for dancing! As the disease progressed I realised her daughters, all with young children, would need support to care for their mother. I lent the Share the Care book to one of them and her response was enthusiastic. However, she asked me to talk to her mother to see if the system was for her. If so, I could set up the group.
The conversation with Doreen was very matter-of-fact. She had been a nurse until her retirement and had watched her mother and sister die of MND so knew exactly what she was likely to experience. I left the book with her and she rang me later full of enthusiasm and I agreed to set up a group for her.
I am not going to pretend I was not nervous about doing this. I tried to recall how Kate's first meeting went and remembered how emotionally charged the occasion was. Needless to say, my anxiety proved un-necessary. The shift in how people felt at the beginning of the evening and how they felt after we had looked at how the system works, and how we as a group could organise ourselves, was incredible. Dor's Doers was a reality!
I had imagined her daughter would co-ordinate the group but Doreen was adamant she would do it herself and she did! I think she really enjoyed keeping everyone on their toes. When friends visited from the mainland they became temporary members of the team. Doreen earmarked certain people for certain jobs and was very careful to choose someone who could manage her wheelchair. A neighbour joined the group and he dealt with garbage bins, recycling and mail.
Doreen had many connections with the health care system and the hospital and some of the aides she needed arrived almost before she required them. This was partly her own organising because she knew the implications of each stage of her disease. I can still hear her saying "I am so blessed". Every time I saw her she thanked me for the group and I think it allowed her to be in control and do things her way.
Doreen and I had been asked by the Motor Neurone Disease Association Victoria/Tasmania if we would make a presentation at a forum for health professionals. Doreen would talk about Living with Motor Neurone Disease and I would talk about Share The Care. Both presentations were very well-received. Doreen, of course, had been a health professional but I had a teaching background. I lent three copies of the Share The Care circulating and spreading the word.
Not long after, Doreen surprised us all by deciding she would stay in the palliative care ward from that point on. It was a very rational decision. She argued that she had expert care, a beautiful room and she called her new home Whittle on Davey, five star accommodation. The Share The Care team simply transferred their base to the new venue and carried on with outings, visits, scrabble parties, afternoon teas, prayer meetings and so on. There were lots of visitors from the mainland and Doreen's sister stayed for a while. We had a birthday party at a local hotel and Doreen thoroughly enjoyed herself.
Doreen was happy to realise that she was going to experience one more Christmas but by this stage she was clearly not going to live much past that date. She told her family she would wait until Boxing Day and died the day after. It was a peaceful end with her family present.
The celebrant at her memorial service was one of her Share The Care group. It was as joyous as such celebrations can be. Each of her grandchildren read from a book they had made called "Why we love Grandma". They had all helped to decorate the coffin with colourful handprints. The eldest grandchild played "Farewell to Skye" on his cello. "The service was followed with champagne at Doreen's instruction. Dor's Doers were there in force.
I remembered how helpful the final meeting of Kate's support group had been so I offered to organise one last gathering for Dor's Doers a month later for breakfast on Australia Day. I introduced the programme as follows: "Even though the key motivation for forming Dor's Doers no longer applies, many important and nurturing relationships have formed in the process of caring for Doreen and today allows us to affirm them. We lived "on alert" as a group and we must accept that we are no longer needed and we have each to let go mentally, physically and emotionally to move forward. "
Then I continued "because the focus of this morning is not only on Doreen but also on us I would like you to write down the ending to this sentence 'The most important thing I have learned about myself through being part of the Share The Care group is….'
"that I was worried that I wouldn't be able to do what I had offered ie stay overnight. What if she fell? What if she had breathing difficulties? etc, etc. I was NOT called on for night duty. Lesson--live for the moment!"
"that there are always people willing to help and one only has to ask."
"that I didn't ever feel (badly) about seeing Doreen going down hill, but looked forward to my visit. It confirmed, very forcefully, that I didn't fear the dying process."
"I need to work on prioritising the things in life that are important. I need to develop more resilience in coping with the challenges of life."
"It is the first time I have spent time with someone who was dying. I was surprised that it was a positive experience and how I felt about saying goodbye to a dear friend. I could be a Share the Carer again. It is a spiritual experience as well as a practical one."
"that I am not so afraid of dying, which Doreen showed was actually living and loving to the end."
"to be able to give more freely."
"my ability to push on, to be strong and weak, vulnerable and OK in a difficult journey. The complexity of human nature!"
After reading the comments I continued, "At the end of our lives we may well ask what is the meaning of our life, what have I done to make a difference? What will I leave of lasting value? Who will remember me? These are the questions that create meaning for us and by caring and sharing with Doreen we may well have already asked these questions of ourselves.
None of our Share The Care experiences can be taken away from us and as we say the official good bye to the group, we free ourselves to respond to other needs amongst our friends and our community. We are changed people. We know our capabilities. We are better for the experience no matter how challenging it was. We got to know Doreen, each other and ourselves even better and will look at life differently from this privileged point on.
In closing I want to offer our love to Simone, Danielle and Yvette and their families and to thank them for allowing us to share intimately in Doreen's last adventure. I want to thank all of you for your part and to send us all on our way with the help of Doreen's inspirational courage, determination, optimism, enthusiasm, commitment, faith, organization and generosity of spirit."
The family then marked this occasion with a small gift for each one involved in Dor's Doers. Her daughters gave each a framed photo of Doreen and some comfort food, chocolate!