A Hospice Client Encounter

Nick Ruiter

I met a man this summer, in his 80s, with a head full of curly white hair.


I sat on his couch with him. I knew his pain was not well controlled because the initial referral from homecare stressed that his goal was "to get the worry out of my system" rather than deal with his physical pain.


I asked him if he was experiencing pain. He grimaced and replied, "I wouldn't wish this pain on my worst enemy." Then he added, "Time's no good for you when you're sick" and he managed a smile.


Such living wisdom is not easy to come by. He has since died but he will be one of my teachers for a long time.


© Ruiter, Nick. (September 2006). "A Hospice Client Encounter" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Nick Ruiter
Spiritual Care Coordinator, The Dorothy Ley Hospice
170 Sherway Drive Suite 3, Etobicoke, Ontario M9C 1A6 CANADA
416.626.0116,
spiritualcare@dlhospice.org


Handcasting: Holding onto a Legacy

Mona Rutenberg

A few years ago, I decided to combine my knowledge of a casting and molding technique with my work as an art therapist on a palliative care unit in an acute care hospital in Montreal. I had to adapt a technical process, usually done in my sculpture studio, to be easily carried out at a patient's bedside.


I began to present casting a patient's, and at times, a family member's hands as part of an individual's work in art therapy. Basically, by the end of the process, I would be giving the individual or family member a realistic plaster copy of the hand gesture.


For some people, when initially offered the opportunity to leave this type of legacy, they cried but were deeply moved to know that when their loved one is gone, they will be able to retain this powerful keepsake. For others, they have taken the offer as a chance to leave a lasting gift of themselves ­ a quiet, powerful gesture. In some cases, just watching or participating in the process gives them a chance to be creative, discover something new, and to celebrate life.


Once, while two people had their hands clasped in the rubbery substance, one said when asked to pull their hands out of the mold, "but I don't want to let go." How symbolic of their relationship. It's not easy to say good-bye. But this process helps to deal with the inevitable parting and begin to deal with their grief.


We are familiar with the significance of photographs and how they stir memories within us, yet a sculpture can be held, touched and admired from many sides. The duplication of the hand, in this process, is startlingly real, and for some reminds them of the comfort and pleasure of having once touched and held that hand. The hand that was squeezed, tickled, stroked, clasped and belonged to someone who was cherished.


It is an honor to be part of someone's final days, where perhaps I have helped to ease the pain of saying good-bye. Casting something is not a new technique, but bringing the approach into a hospital and blending empathy, a lending ear, compassion for a fellow soul, respect for the patient and family as they wade in deep waters, gives me satisfaction both personally and professionally.


© Rutenberg, Mona. (September 2006). "Handcasting: Holding onto a Legacy" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Mona Rutenberg
5411 West Broadway, Montreal, Quebec H4V 2A3 CANADA
514.481.8314,
monarutenberg@yahoo.ca


Reconnecting to Her Whole

Mary Anne Schleinich

When I met Mrs. Dubyk, she was sitting up on her bed, cross-legged, and watching T.V. She had been hospitalized because of pain which had caused her to become largely bedridden for the past two months. Her increasing care needs were a concern to her daughter who lived with her and who also worked full-time outside the home.


I do not recall the medical details of Mrs. Dubyk but I was impressed by the flexibility, strength and energy she demonstrated by sitting in her position. I was also impressed by the great posture she held for an elderly woman and her attention to the cooking program. She did not make eye contact with me, and so I asked her about cooking and our conversation continued with her eyes fixed on the T.V.

I asked her if there were some special dishes she typically made for Easter, a holiday that was coming up. She said yes, and that she was very good at making doughnuts of her heritage. I suggested that an idea might be to make these on the unit. I asked what was needed, and wondered if her daughter might bring in the materials and ingredients.


With some surprise at the request, her daughter brought in the electric frying pan and ingredients later that week. Mrs. Dubyk joined us in the Family Room. She stood and made doughnuts at the table with enthusiasm. Her daughter exclaimed that I was getting her to do something she had never done before, which was to learn how to make these doughnuts from her mother.


The timing could not have been better. Mrs. Dubyk belonged to a group of women from her country of origin, with whom she had both danced and sang for many years. Several of these women came on the unit to visit and entered the Family Room. At once Mrs. Dubyk was connected to the many roles she occupied before her illness. She was mother, hostess, cook, and member of her women's group, linked to ancestral roots.


The opportunity for supervised activity and the Family Room as provided by the Tertiary Palliative Care Unit enabled Mrs. Dubyk to see that her roles endured her illness.


It is possible that grief at loosing her roles contributed to her pain and suffering, and that reconnecting to her whole self-facilitated pain control. She returned home soon afterwards.


© Schleinich, Mary Anne. (September 2006). "Reconnecting to Her Whole" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Mary Anne Schleinich, BScOT
Occupational Therapist, Tertiary Palliative Care Unit 43
Grey Nuns Community Hospital
Edmonton, AB T6L 5X8 CANADA
780.735.7693,
maryanneshcleinich@cha.ab.ca


Ruth: An Interfaith Encounter

Ian R. Smith

A major part of my outreach ministry in the wider community is my involvement as Pastoral Coordinator (volunteer) of the hospice in my area. I have experienced many moments of grace in this hospice ministry, but the following story is perhaps one of my most memorable to date. Any names used are fictitious to protect the identity of the persons involved.

* * *

"Ruth", in her mid-to-late 70s, was a patient in the hospice for about four months (a much-longer than usual stay than most of our patients). She was Jewish.

The first day I met her, I introduced myself as the Pastoral Coordinator of the hospice, and that I was also a full time Christian pastor. I subsequently saw her once or twice a week until about a week before her death. We talked about all sorts of things, and she was very open to sharing her spiritual journey.

During our second or third encounter, Ruth smiled and said to me, "I hope you understand that, while I accept that Jesus was a good man - perhaps even a prophet - I cannot accept him as my messiah."

I responded, "I'm not here to convert you, Ruth, I'm just here to share God's presence with you." Over the next few weeks, we had some incredible faith talks.

About a week before she died, I went into her room and she looked deeply troubled. I said, "Ruth, what's on your mind today?"

"Death," she responded in a flat monotone.

"Would you like to talk about it?" I asked. And so we did. She was greatly troubled about having to leave her loved ones behind.

And then, suddenly, she interrupted herself and said, "Will you pray for me?" ... and so, holding onto her hand, I began to pray, thanking God for the support of her loved ones around her; for all those things in her life that had reflected God's love; and that God would ease her pain at having to let go. I then began to sing a gentle Hebrew blessing in English "May the blessing of the Lord be upon you...".

Her eyes were closed, and suddenly, her hand began to shake in mine. Her family members in attendance gathered around the bed, thinking she was about to die. With her eyes still closed, Ruth looked up and began shaking her head back and forth, saying, "No, not yet! ... not yet!"

After about three minutes of this, she opened her eyes and gave me a puzzled look. I asked, "Ruth, did something just happen?"

"Yes! I saw light and what looked like blurry human shapes, and they were wanting me to go with them, and I told them I wasn't ready to go."

"How did you feel when you experienced this?" I asked.

"I wasn't afraid; it was very peaceful ... beautiful really," she responded, "but I wasn't ready to go with them."

Ruth died about a week later ... about an hour before I happened to enter the hospice for the Weekly Rounds meeting. The family was waiting for the funeral home to come and pick up Ruth's body.

One of her daughters came up to me and said, "It was amazing! My mom was comatose, and I was lying beside her in the bed, holding onto her. Dad was standing at the foot of the bed, and my sister and brother were sitting in chairs right next to the bed. Suddenly, Mom woke up with an incredible glow on her face ... looked at me and smiled ... then smiled at my sister and brother ... then smiled at my Dad ... and then looked up over Dad's head ... uttered an exclamation of wonderment and said 'Uncle Mike!' ... and breathed her last. It was so beautiful!"

("Uncle Mike" was Ruth's beloved uncle from Europe where she grew up. He had died about 40 years previously. Both of her grandfathers had died when she was little, so Uncle Mike had taken on the role of her grandfather).

* * *

Some conventional, traditional interpretations of Christianity would say that the possibility of such an occurrence is out of the question ... because Ruth was not a Christian. What has been reaffirmed for me from this spiritual journey is that, being open to encountering Ruth as she was, being open to being an instrument of God's presence, and being open to wherever that might lead, I ended up on very "holy ground" ... an experience I will cherish and celebrate for the rest of my life. Our patients are, indeed, our best teachers.

© Smith, Ian R. (September 2006). "Ruth: An Interfaith Encounter" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Rev. Ian R. Smith
30 Saddlewood Avenue, Pointe-Claire, Québec H9R 5S6 CANADA
514.626.4795,
ian.iansm@gmail.com


Coming Home

Janet Stark

Dad was dying. He was a retired farmer from Southern Ontario and he was dying of lung disease.


One spring day we got the call. It was my Mom, asking us to come to Hamilton to the hospital. Dad had gone on oxygen a few days before at home, and now his condition was worsening. At one point his heart had stopped, and with a flurry of activity he was revived. At the time, the doctor didn't know he had a hand-written advanced directive with a do not resuscitate order.


In retrospect, my Mom said it was just as well, as giving him a few more days of life allowed us to say our good-byes.


All five children made it home, and at one time all of us were in the hospital room with Dad. We're spread out now, and it's not often we are all together. Dad knew he was dying. I had written him a poem, thanking him for all of the things he taught me over the years.


Garnet Law 1925-2005

Dad
Over the years you taught me many things
To play euchre, checkers and crokinole
To dance, and enjoy fiddle music
To make homemade ice cream
To like black licorice and humbugs
How to braid binder twine for a calf rope
To swing on a rope in the barn
How to write a speech about Wilf Carter

To sing to the cows: "Mares Eat Oats," "Little Brown Jug,"
"Turkey in the Straw" and "Cheer Boys Cheer"
To enjoy a country picnic
How to feed a dog from the table
A strong work ethic; (I picked stones)
To take interest in my family history
To take pride in the love of the land.
For all these things I am grateful.
I love you Dad,
Janet


He was not an emotionally-expressive man, but as I read him the poem that night, he squeezed my hand so hard. Without words, I knew he loved me, and he had given me the blessing. He said thank you and it was more than enough.

One afternoon, we all went down to get a snack and give Dad some quiet time. When we returned, his minister was there. The minister had my poem in his hand. They must have been chatting about us kids, because I heard my Dad say I guess we didn't do too bad, because all his kids came home to see him. The minister was doing what we call in palliative care: giving meaning and purpose by a life review.

Over the next few days, there were lots of family going in and out of that room, and at one point we thought he had rallied and was improving. When the doctors discussed palliative care with my parents, it was then that Dad said he wanted to go home. The weekend was coming, and it was going to be hard to arrange his discharge with home nursing care. It was month end as well, and the doctors were on monthly rotation. He was getting a new doctor too. We promised him we would get him home.

He held on, weak with very labored breathing and not able to eat much. Late Tuesday afternoon, the ambulance brought him home. As the attendants carried the stretcher into the old stone home, he had them stop and he took a long last look at his farm. He looked at the fields and the rolling hills, the barn and the home where he had brought my Mom as a new bride fifty-five years before. Again he said thank you. They put him into the hospital bed, which had been prepared in the living room. Then it quieted down.

My Mom was with him, and also my sister, a geriatric nurse. Perfect. His breathing changed, and with my Mom and my sister holding his hands, he died, about an hour and a half after he got home. It was perfect. He had come home, to his beloved farm, to die.

© Stark, Janet. (September 2006). "Coming Home" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Janet Stark CHA
Lanark, Leeds & Grenville Palliative Care Education Coordinator
Brockville General Hospital
Garden St. Site, 42 Garden St. Brockville ON K6V 2C3 CANADA
613.345.5645 x 4414,
staja@bgh-on.ca

Touch Their Hand Gently

Anna Towers

I have a useful clinical tip for palliative care professionals! This is something that our Palliative Care Head Nurse, Rhoda Hoffman, taught me back in 1993 at the Royal Victoria Hospital in Montreal.


Often when we make our rounds on hospital or inpatient hospice patients, they are, or seem to be, asleep. We never wake patients up, but what if they're not really sleeping?


What a dilemma! Rhoda taught me to touch their hand gently. If they open their eyes, they weren't asleep, only resting. And if they're deeply asleep, a light touch on the hand will not wake them. Dilemma resolved, nobody gets awakened from precious sleep!


© Towers, Anna. (September 2006). "Touch Their Hand Gently" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Dr. Anna Towers
Director, Palliative Care Division
McGill Departments of Oncology and Medicine 1650 Cedar Ave, L10.221.3 Montreal, Canada H3G 1A4
Tel 514-934-1934 ext 43964
anna.towers@muhc.mcgill.ca


Let's Go for a Walk

Harry van Bommel

"Let's go for a walk" has started many of my conversations with family members, friends and colleagues who want to talk about their worries, questions, and feelings about the dying process. I have found that a walk (or a drive when a walk is not possible) is one of the safest ways to talk about some of our most difficult feelings and thoughts.


It is safe because we can talk without looking directly at each other. It is safe because we can walk for minutes without having to say a word. It is safe because when we want to cry, we can put on arm around each other's shoulders, stop and hug if we like, or just keep walking ­whichever is most supportive.


I remember walking with a friend whose mother was dying. We were walking along downtown streets in mid-afternoon with all the hustle and bustle that implies. Yet we were walking in almost complete isolation. We did not really see much of what was happening around us. We felt alone in a crowd and it felt comforting somehow.


Walking in no particular direction with no particular goal in mind, we talked about some general feelings, thoughts and observations on the weather, the news reports of that day, etc. The conversation slowly, and naturally, moved to where she talked about how much she worried about her mother's care, her concerns about possible pain and discomforting symptoms, and her worries of how the rest of her family would deal with her mother's death.


We took each of her concerns in turn and I gave her some ideas of what might help in each situation and we brainstormed other ideas. We discussed which local hospice program might meet her mother's needs best and how to establish a support circle of family, friends and neighbors should her condition continue on for some months. We discussed effective pain and symptom control and what barriers might exist in her mother's situation that would need to be addressed. She talked, at length, about her family dynamics and with only a few opened-ended questions on my part, she examined what was possible to achieve in the weeks that remained and what was likely not to be resolved within her family.


When we walked by an art gallery, she interrupted our conversation to tell me how her mother used to take her to galleries and museums to share her passion for the arts and history with her. She talked about her parents' lives together, their accomplishments, their difficulties and how they overcame some of them, and their love of family. There were many memories of love as well as some of disappointment. There were memories of not meeting her mother's expectations and others of moments together sharing a cup of tea or discussing a common book they were reading. Tears were often in her eyes. It was clear that her mother meant a great deal to my friend and that she would dearly miss her.


We walked in silence at various times without any sense of pressure for either one of us to talk. Silence, amid the noises of the city, was possible and necessary and comforting.


We talked about how she might fill some of her time with mother in ways that would be especially meaningful to both of them. We talked about what she might do with her mother now to provide her wonderful memories in years to come ­ memories that would provide strength, comfort and even joy when my friend might need them most. Things as simple as reviewing photo albums together, writing a poem or letters to each other, listening to music quietly while snuggling up by the fire. Holding hands. Sharing a tissue box. Telling stories.


Not altogether conscious of how our walk had turned into a circular route, we were near her home where we had started. The last half-hour or so we had walked a lot in silence. She had said most of what she needed to say and asked the questions she thought I might have answers that could be helpful to her and her family. We enjoyed each other's quiet company along the tree-lined streets in her neighbourhood ­ each deep within our own thoughts. She about her situation ­ me thinking back to times with my mother and father before they died.


In her driveway, we hugged, cried a bit at all the experiences she had gone through in the past months and the ones yet to come. She smiled and said a thanks and I smiled and thanked her as well. These types of walks are a mutual gift of trust, of sharing practical information and of listening with the heart and mind and spirit. We both offered insights and thoughts that are helpful to the other. We both accepted the help and consolation that the other offered unconditionally.


Dr. Dorothy Ley said that at the heart of successful hospice care is spiritual care. In her words, "It says we are here. We will be with you in your living and your dying. We will free you from pain and give you the freedom to find your own meaning in your own life ­ your way. We will comfort you and those you love ­ not always with words, often with a touch or a glance. We will bring you hope ­ not for tomorrow but for this day. We will not leave you. We will watch with you. We will be there."


One practical way of doing this is to say to someone "Let's go for a walk." If they can no longer walk, perhaps a drive will work. If they prefer or need to stay at home in a chair or in bed, then simply sit kitty corner to them. Be close enough to touch them when appropriate yet not directly across from them so they can look away from your eyes easily and with no guilt when they need the "space" to be alone for a few minutes with you right next to them. This is one of the true joys of hospice palliative care and I feel blessed each time I can share in such a memorable conversation. A gift of hospice palliative care is the time we give ourselves to be with people in silence, in conversation, in harmony.


© van Bommel, Harry. (September 2006). "Let's Go for a Walk" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Harry van Bommel
Executive Director, Legacies Inc.
11 Miniot Circle, Toronto, ON M1K 2K1 CANADA
416.264.4665,
harry@legacies.ca

Selected Journals of Successful Hospice Care


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