Ending Life Well 

Making an End of Life Plan

"The weather," was Gwenda's response when I asked her what they talked about at the Seasons of our Lives meeting.  Gwenda has Down Syndrome, and I wondered whether she had been able to follow the content of the meeting, which I knew was to be about ageing and dying.  But, I also knew that she had lost important family members in recent years.  Maybe, like many other people she just didn't want to talk about death.
                        -Marni, a friend of Gwenda in L'Arche Vancouver

Conscious that several of their members with developmental disabilities and some of their older assistants were likely to die in the coming few years, the people of L'Arche Vancouver asked its coordinating team to develop a process to help everyone in the community think about their stage in life and to make an end of life plan that would express their wishes for their care, their estate and their funeral and burial.  Here is a description from two of the team members.

We encouraged everyone to choose a friend or family member to talk with in making decisions.  We developed a three-stage process, with three large meetings to initiate the stages.  The meetings were for all of in in L'Arche, people with disabilities and the longer term-assistants especially, and any family members and friends who wished to join in.

The first meeting, which we called “Seasons of Our Lives,” inaugurated a phase of looking at where each of us is in our particular life journey.  We spoke very simply about the life cycle, drawing parallels with the seasons in nature.  We spoke about some of our friends or family members who had died, and about the fact that we will all die one day.  At the meeting, each person received a one-page summary of the “Seasons of Our Lives.”  Some identified themselves as in the spring or summertime of life, and others were able to recognize that they were in the autumn of old age.  Just as important and sometimes more difficult, the process helped some of us come to terms with the fact that our parents were approaching death.  The fact that we were all sharing in these conversations together seemed to help those who had difficulty with this topic.

At the second meeting, we introduced the topic of planning for old age and death.  We invited a speaker from a funeral home to tell us what happens to people’s bodies when they die and what the options are – a closed or open casket, for instance, whether to be buried or to be cremated and where one might be buried or have one’s ashes placed.  The speaker talked simply and sensitively, and people could ask questions.  Her presentation seemed not macabre but quite natural.  Most of us, disabled or not, realized that we didn’t know much about what happens at death.

Bill Collins, a man with a mild disability who was one of the founders of L’Arche Vancouver, agreed to be the first person actually to make an end of life plan.  Bill was suffering from Parkinson’s disease and was conscious that his health was failing quickly.  In the ensuing several weeks, we worked with Bill and he helped us figure out the parts of a decision-making package that everyone could be offered.

The third meeting was a celebration of Bill and of the completion of his plan and also the inauguration of end of life planning for the rest of the community.  It helped that Bill, who was respected as a leader, had made his plan.  He lifted it up proudly and told others that it was a good thing to do.  At the end of that meeting everyone received the package we had prepared.  At this time, we also encouraged people to join a memorial society, since doing so offers substantial financial savings.

Completion of the plan can take some months as the plan has several phases – preparing a living will, choosing a power of attorney, preparing a last will and testament, deciding on and purchasing a burial site and prearranging the funeral.  People often want to indicate their preferences for visitation and the funeral service – listing songs and readings and people they would like to speak

-Laurie Duke and Denise Haskett

 
Bill Collins

I visited Bill Collins shortly before his 85^th birthday.  He was becoming quite weak and had moved into a house that his L’Arche Vancouver community had adapted to function as a nursing home for three of its senior residents.  Bill took pleasure in showing me his life-story photo album.  Some pages elicited stories he would share: “That’s Nelson Eddy – our cat.  I ran over its tail with the lawn mower.  Good that it wasn’t a power mower or it would not have had any tail left!”  Bill’s friend, Craig Herren, an assistant in the Seniors’ house, was making a video with Bill using stills from his album along with Bill’s reminiscences.  Is sensed the pleasure and pride they shared in their project.

Bill died a few months after my visit.  I asked one of his community friends, Denise Haskett, to describe his death and how his having made an end of life plan had helped.  Here is part of her account:

“Bill died on Palm Sunday, the Sunday before Easter.  Some who mourned his passing took comfort that Bill returned to his God on this special day.  He had some pain that afternoon and was taken to hospital.  He died that evening from sudden onset pneumonia.  He had been registered to go in the Sun Run that morning, although it was evident a few days before that he was not up to it.  Bill had participated annually in this fund-raiser to support Parkinson’s research and other good projects, making the shorter course in his wheelchair in recent years. 

Bill was persuaded to prepare an end of life plan because he understood it would help others when he died.  He did not like to talk about his death.  He would politely change the subject or imply that someone else was going to die but not him!  However, when asked who he would like to give his things to, he lit up and was quite clear.  ‘My electric bed could go to Guy, a good friend who has lived many years with me in L’Arche.  My wheelchair and walker can be given to whoever needs them.  My stereo can go to a drop-in centre for street people, whichever one wants it, and my CDs and tapes as well.’  (Bill had a wonderful collection of classical music, which he loved.)  He also wanted $100 to go to his foster child in Zambia.  Bill was always looking for ways to help and give of what he had.  This process of naming who would get what seemed to give Bill a lot of joy and peace.  He had great clarity about his wishes.  For those planning his funeral, to be able to follow through on the wishes he had expressed in his plan was very helpful and consoling.  For example, he wanted an open coffin so his friends could say goodbye to him, and he had named his pallbearers.  Following his wishes was a way of really honouring this great and humble man.”

 

Taken with permission from L'Arche Vancouver. 
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