I would have come across Lynda’s book, Living Legacies, about 6 years before Yarra died. At the time it seemed likely that my wife would not be living for that many more years. So naturally we wanted to prepare ourselves for her dying.
Almost everything Lynda says in her book made total sense to me. And I love the way she is really matter-of-fact about what needs doing when a person dies, yet writes with sensitivity, almost poetic, around our feelings and needs at that time.
Yarra had severe multiple sclerosis. After becoming wheelchair-bound in 2001,she lost all movement in her limbs by about 2004. Her ability to speak had deteriorated markedly by 2002, and disappeared totally soon after. She died in 2007, aged 43.
A close childhood friend of Yarra’s, who is also a photographer, published a book of photographs, entitled LIVING, about her life as it was in 2003. I love these photo’s. They tell a part of the story of Yarra’s life, her struggles and challenges, and mostly, her acceptance and celebration, of what is.
Swallowing food and drink had become increasingly difficult by 2000, and in 2001, almost impossible. So after much discussion between Yarra, her parents, and myself, we decided to allow a direct tube to be inserted into her stomach, enabling her to have liquid food. At the same time we made legal provision for Yarra, or myself, with medical power of attorney, to reverse this intervention in the natural process of her life, at any time in the future.
And we did in fact do this 6 years later, when we stopped using the tube, ceasing food and fluids to Yarra.
Throughout Yarra’s illness, we (family/whanau on her side and mine) always tried to include Yarra in all discussions concerning her welfare ~ including, of course, her death and dying. For example: in the regular discussions with her GP. In her last year or so these included the question of using antibiotics, or not, and the big one around the use of her feeding tube.
For years, Yarra and I had regular sessions with our counsellor, and even a few including her parents. How were we doing with the many challenges in our lives?
In 2006 it looked like Yarra was heading for pneumonia, and I had to decide whether we were going to use antibiotics. I remember sitting in the garden of Motueka Community Hospital (where Yarra lived) with Yarra in her bed on wheels, beside me. We sat with this question for about two hours. And I became very clear that we would not.
The pneumonia miraculously did not eventuate. But for a day or two we were preparing for her death. Which was an amazing preparation for her eventual death, the following year. Quite some discussion took place between Yarra’s parents and siblings (in the U.S.) and myself, around everyone’s feelings and needs concerning her dying. Based partly on discussions with Yarra years before, when she was still able to speak, we had a strong sense that she was ready to move on ~ a feeling that had been growing over several years. And we were ready to let her go.
At home here in the Motueka Valley, one evening in late January (2007), Vikki and Irma (two of our closest friends) and I, sat with Yarra and we discussed together how we would like everything to happen, when Yarra would leave her body. When would this be? A sense of trust developed that the knowing would come. Simply, the knowing would come.
In June, when pneumonia again threatened, we stopped feeding Yarra.
A friend had already made her coffin, which we started decorating. Her parents and sister came over from the U.S., and we began our vigil with Yarra for her last couple of weeks. Of course this was quite an intense time for us all, but for me also, mostly, very beautiful. I shall never forget those hours and hours of sitting with Yarra, as we both dived ever more deeply. I also remember taking every care to stay healthy during this time, I wanted to be totally there with her. So I greatly appreciated her father being with her those nights, enabling me to get enough sleep.
Yarra, for the greater part, seemed very clear, and accepting of her approaching death.
Some years before, Yarra and I had met someone who had been caring for her husband up to his death. The main part of that quite brief meeting, for me, was her wonder around the TRUST her man had had in her. I have never forgotten that, and never more so than in those last two weeks, as Yarra put her total trust in me.
Although I had mostly assumed that I would really want to be present at Yarra’s actual last breath, when the time came, I realised this was not so important for me any more. About half an hour before she died, her mother and father being with her, I felt a need for spaciousness, to be outside in the garden ~ where I walked singing songs of celebration, rejoicing in Yarra’s release from her body.
Then, the silence……
At the Hospital, we had total support from the staff. With one of the nurses we felt closest to, I had made preparations for washing Yarra’s body, dressing her etc. Her body was not, of course, taken away to be embalmed. Together with her parents, I was in total control of the whole ‘funeral’ process.
When the time came, first Yarra’s mother, then her father, indicated that they wanted to be part of washing their daughter’s body, together with the nurse and me. I totally loved doing this. Sharing this simple act together was such a wonderful experience for me, to really feel the lifelessness of her body. I am sure it contributed greatly to the relative ease of my grieving, and I strongly recommend this hands-on experience. And it was yet another deepening of my connection with Yarra’s parents.
We gently closed her mouth, and held her jaw there with a scarf around her head for a day. (Though later, my sister pointed out that for many years Yarra tended to have her lips slightly open! ~ after she lost her speech.)
We then laid Yarra’s body in the coffin, and with the help of hospital staff, carried it out to her wheelchair van ~ at the same time singing together, led by the nurse manager. During the trip home, for about an hour, there
was a spectacular display of rainbows and other lighting in the sky!
We laid the body out on a bed, where it remained for two days. I was happily surprised to find how easy and fulfilling it was to sleep on my bed next to Yarra’s those nights.
June 2007 was a very cold winter, so we did not have to worry about anything like ice around the body. But neither did I light a fire those days.
Family and friends came to visit, including many children. And the coffin was decorated some more.
When my sister-in-law asked me about taking photographs of Yarra’s body I felt some ambivalence. But now I feel very grateful for those photo’s. I have looked many times at one particular photo and I am often amazed at Yarra’s beauty in death, as much as in life.
Somehow the idea arose to have the cremation of Yarra’s body before the Celebration of her life, where we had the ashes in an urn. This felt OK. Though when I went to another funeral recently, I also appreciated having the body right there amongst us, just reminding us that the person really wasn’t there any more.
Some 30-40 family and friends gathered at the crematorium, and Yarra’s parents led a short ceremony. Several of us then helped push the coffin into the furnace, 8-year old Luka pushed the furnace button, and we sang some songs as the coffin burned. It was important to me that we participated in every step of the process, not a coffin just disappearing behind black curtains.
The next day we had Yarra’s Celebration at the Riverside Community Hall (formerly a church) in Lower Moutere. Our friend Irma had offered to facilitate this event, which I was very happy with. At other funerals, I have usually not felt very connected with a celebrant who has never known the person who has died. Also, I
generally find it hard to maintain my interest with most eulogies I have heard, especially the many chronological details that are common. With Yarra, the majority of those who spoke focused on aspects of her life that had touched us most.
We released some helium balloons outside, something Yarra had thought of at my mother’s funeral. At the end, after afternoon tea there were still some 30 of us to dance our farewell, with music.
This is my story, for now, of Yarra’s dying. Obviously, there is much that has been left unsaid. I invite you to contact me about any aspect you would like to explore further.