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«Complicated Grieving and Bereavement - Understanding and treating people experiencing loss Published in 2000, by Baywood Publishing Company. Inc, ...»

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Article by Jane Powell published in

Complicated Grieving and Bereavement - Understanding and treating people experiencing

loss

Published in 2000, by Baywood Publishing Company. Inc, Amityville, New York. IBSN 3 0-

89503-213-9(cloth)

CHAPTER 8

Grieving in the Context of a Community of Differently-Abled People:

The Experience of L'Arche Daybreak*

Jane Powell

At the very beginning of this chapter, I want to take a risk and put forward the proposition that

people with a developmental disability, far from experiencing complicated grief, may actually have much to teach the rest of us about grieving in a healthy way. There are, of course, exceptions. But the world of death and bereavement is a world of intuition, symbolism, and ritual, and people with disabilities tend to be much more in touch with these domains than some of the rest of us. I believe that it is precisely because of the lack of cognitive ability that people with developmental disabilities can live more spontaneously from their emotions and, because of this ability, can even give leadership in the work of grieving. But this can happen only if these people are actually enabled to know about terminal illness, to be close to their friends and family members as they approach death, and to participate in the normal expressions and rituals of grieving.

My own learning in this area has taken place in the context of the L'Arche Daybreak community~ intentional faith community where I have lived for many years. Daybreak is a member community of the International Federation of L ' Arche Communities, founded by Jean Vanier. In North America, L ' Arche communities are predominantly Christian, but other faiths are also welcomed. In L ' Arche, people with developmental disabilities share a life together with those who come to assist them. We live together in households, and while some members of the community have employment outside the community, others spend their days together in day and seniors' programs or working in the woodworking shop. Mutuality is a fundamental principle of community life in L'Arche. We believe that each person both gives to and receives from others in the course of our community life. All that I say in this chapter is based on the experience that "care-giving is not a one-way street," and on the assumption that caregivers have the courage, humility, and insight to receive from those whose care is entrusted to them at some more formal level. Particularly in this most universal realm of death and grief, barriers fall away and we become aware of our common humanity.

Our community of L'Arche Daybreak is rich in diversity of age, intellectual level, religious background, and means of communication. In recent years we have grieved the deaths of several community members, family members, and friends. Because many members of the community have an intellectual disability and some have multiple disabilities, we have needed to find ways to deal with death very concretely and creatively. We have seen the importance of involving each member of our community in the grieving process, whether labeled "disabled" or not. This concrete and shared involvement has greatly facilitated our walking through grief to acceptance and consolation. I share some of our experience here, believing that it can be generalized to other situations.

I will deal with the three stages in the grief process-anticipatory grief, intense grief, and bereavement-describing the steps we have found important to take before the death occurs, the actions we take at the time of death, and the ways in which we facilitate the grieving process after the loss. I give the greatest attention to the first stage because I believe that if it is lived with depth, the actual death and later bereavement is much more likely to be smooth.

It will become clear that in each stage, while some steps may be particularly helpful for someone with an intellectual disability, many can be of value to the so-called "normal population" as well.

*This chapter has been developed from a practice report presented at the conference "Understanding and Treating Complicated Grief," hosted by the University of Western Ontario, London, Ontario, Canada, in May 1998.

WHAT CAN WE DO BEFORE A DEATH OCCURS?

Drawing from our experience at L' Arche Daybreak, I will suggest seven steps that can help the person with a disability prepare for the loss of a loved one. Everything I say here treats as fundamental that honesty will be the rule in communication about illness and impending death and all that ensues. We need to be committed to keeping members informed frankly and clearly of the progression of their own or someone else's illness. In the past, a somewhat patronizing attitude and perhaps fear of unexpected, possibly embarrassingly emotional responses, and also the mistaken assumption that people cannot understand, fed into a tendency to want to shelter people with disabilities from the truth about painful situations. It is now well known that such "sheltering" does much damage that is very difficult to undo later.

What I am saying assumes also, of course, the exercise of sensitivity in communication, as would be the case in communicating with any other person about the illness and death of a loved one.

Create a Support Group





At Daybreak, most of the seniors with disabilities belong to the Seniors' Club, which meets Monday to Friday as a social club and peer support group and to engage in various recreational and social service activities. It is the peer support aspect of this group that has proved especially important at times of loss or anticipated loss. This is a group of people who are aging together. They have known one another for some years, and, with good facilitation by a small team who knows the seniors well, they are able to share their fears, sorrows, and frustrations. It is a group where the seniors can gently cope with the variety of losses that accompany aging, and where they can prepare for their own dying and the deaths of others. It is a place to be cared for emotionally and spiritually while becoming more fragile physically.

And it is a place to give care to friends and to be respected as a wise elder.

Many in the group have lost parents, siblings, and friends; and with the aid of good facilitation have learned to support others in this situation. George knew that when his sister died too far away for him to attend the funeral, he had a safe group with which to share the story of their relationship and to help him to try to make sense of the loss.

He knew others in the group had been through similar experiences and that the moment had come for him to receive the type of support he had offered to them. When she died he brought a photo of his sister and some letters she had written to him, and the others listened sympathetically as he spoke about what she had meant to him and remembered some of the good times of their childhood. At the suggestion of one of the group, he decided to have a memorial prayer service for his sister. All his friends in the Seniors' Club and others who were close to him came to support him at the service.

This group of seniors is able to participate in rituals and to celebrate together. Milestone birthdays and their silver anniversaries of coming to Daybreak are big occasions. It is an environment in which care for others is fostered. When one of the regular recipients on their meals on wheels route died, they sought out the family and sent condolences. The seniors hope for and savor together the many little moments that keep their lives rich and meaningful.

For instance, Peggy's being able to go to her family cottage one last time before it was sold, in spite of her increasing problems with mobility, was acknowledged for the significant event that it was in Peggy's life.

A death or approaching death of a significant friend or family member can bring the loss of other activities and contacts very important to an individual's well-being, quite apart from the actual loss of relationship with the loved one who has died. Such loss can be especially pronounced when the individual is already more dependent on these others for support than might be the case among ordinary members of society. And in the senior years this experience of loss and anticipation of further loss can continue to grow over a period of months or years.

One member of the Seniors' Club, Alfred, became depressed when the death of his mother led to his no longer being able to visit the family home for weekends. Over the ensuing years, as his father became less and less able, even visits at home for a meal became impossible.

Gradually, Alfred's father began to lose both his hearing and his memory and Alfred's previously consoling phone calls to his father became a source of pain and disappointment.

Meanwhile, Alfred himself, who formerly had traveled independently by public transit to visit his parents, became physically disabled and dependent on assistants who were willing to drive him to see his father. Alfred displayed understandable anger, impatience, and frustration during this time. The team in the Seniors' Club facilitated his expressing his feelings to the others and eliciting their understanding, sympathy, tolerance, and forgiveness.

His senior friends helped Alfred not to retreat into sad isolation but to share his sadness and loss with them. Finally, Alfred's father moved to a nursing home and the beloved family home was sold. Alfred continued to be able to visit his father with the aid of assistants, but the loss of the family home was so traumatic that for a time he became quite psychologically disoriented and spent some time in the hospital. Through all this, Alfred's friends in the Seniors' Club remained a constant, kind source of support. Some of the others were experiencing similar diminishment of contact with their families and similar losses of mobility, and as the others spoke about their frustrations, the mutuality of this experience seemed to help Alfred cope. Finally, when his father died, the others rallied around him in friendship and attended the funeral to show him their support. Over the ensuing months some of the seniors joined him when he visited his parents' grave and spent time drawing him out in conversation as he processed the loss and all that his parents had meant to him.

With her friends in the seniors' group, Peggy was able to speak clearly of her hesitations about moving to a new house and to think out loud about the features she would need to help her to maintain as much independence and privacy as possible in the new home. In turn, the group was able to encourage her to ask for what she needed. She can no longer manage stairs, but she wanted, for example, to be able to get to the basement to do her own laundry.

After some discussion, she decided to ask that the new house have an elevator and this, in fact, proved possible.

With some team facilitation the group can speak together about Roy's heart being weak, and how this tires him and means he frequently needs to rest or have an easy afternoon clambering in and out of a vehicle, for instance. With this understanding, they are more able when necessary generously to let go of their own plans to accommodate Roy. And the other seniors can help each other understand why Roy is not always in the most cheerful of moods.

The Seniors' Club is a place other than Roy's home where he knows he is loved and cared for.

Undertake Life Review and Life Story Work

Life review and the preparation of one's life story is becoming increasingly recognized as important to maintaining good mental health as one ages and as helpful in coming to terms with one's own mortality and preparing for death (Butler, 1963). Life review can be facilitated as people share about their lives and family histories with a close friend or counselor or in a small group with others whom they know and trust and where a safe atmosphere can be established.

The preparation of a life story book can be a therapeutic project during the time of anticipatory grief. It can also be a very good way for a terminally ill person to integrate his or her life experiences and the book itself can be a wonderful legacy for friends and relatives.l The therapeutic effect may actually be experienced both by the helper and by the one being helped, as together they examine the many ups and downs of the subject's life journey and the experiences that have shaped who the person has become. And the book itself can be a wonderful legacy for the deceased person to leave behind for family and friends.

Life story work may be particularly important for people who are devalued in our society (Porter, 1998). It provides an opportunity for them to realize how many lives they have touched and been touched by. People with developmental disabilities, of course, are not likely to be able to write down their own memories. An approach that has been used effectively in Daybreak is to assist individuals to write letters to friends and family asking them to send letters with special memories of the person, perhaps humorous little stories or anecdotes, and pictures. We ask that the letters try to highlight the gifts of the person. Tape recordings are also an option if letter writing is difficult. Most recipients are delighted to respond. Often the letters that are sent back to the Daybreak member tell the person of his or her importance in the lives of others. Hearing and discussing these often quite beautiful letters helps the individual to integrate their life history and to see the fruitfulness of their life in their relationships with drive in the country with no others. It is generally a very positive experience for people to work on their life story book with someone they trust. At Daybreak, these books are so sacred that some people have asked to have them blessed.

I The Hospice Foundation of America provides a Life Story kit with a video tape and fill-in-the-blank workbooks for the various stages of a pcrson's life. The Foundation's address is 777 - 17th Street, Suite 401, Miami Beach, FL 33139.



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