Volunteer Help For The Terminally Ill
The Pilgrim Project trains volunteers to provide emotional support to those living with life threatening disease.
The Pilgrim Project (TPP) is a non-profit community group in Montreal, Canada. Trained volunteers provide emotional support to those living with terminal disease.
Why would anyone volunteer to accompany a stranger towards certain approaching death? With my mate’s 100% support, I quit my job and became a Pilgrim Project volunteer.
In May of 1999 I phoned them, offering to be a volunteer. The next training session would be held in the fall.
In September they called me. Was I still interested in taking the training course?
Before the course even started, I had my first patient.
Following is a condensed “journal” of visits with “Grant”.
Tuesday, September 27, 1999 was the date of our first meeting. I was accompanied by the V.O.N. nurse (Victorian Order of Nurses) who was caring for “Grant” in his home. She informed me that he suffered from prostate cancer, which had metastasized, to his bones. A complication was insulin dependency to control diabetes.
All treatment, radiation and chemotherapy had been stopped. The cancer was deemed incurable.
For the next few weeks I visited him at home every Tuesday. We spent our time going out for walks and doing jigsaw puzzles together. On these walks he complained about soreness in his right leg.
On Tuesday, November 2nd his wife Erlene called to ask me to meet them at the Montreal General Hospital. He had a sore ankle and could not walk. I spent six hours there with them waiting for tests and doctors. He was admitted. She took time off work to be with him.
He has a tumor on a nerve affecting his ability to walk. He will start radiation on Monday for that tumor. We discussed activities we could do. He would like to learn checkers, so I went to the dollar store and bought a checker game.
He showed me where the targets had been painted on his chest and stomach for the radiation. He’s in much better spirits since the physiotherapist got him walking up and down stairs. He’s getting a lot more visitors now.
I took him for short walks with the walker. He got tired quickly. Erlene expects that he will soon be transferred to a palliative center.
By the end of November his wife is back at work. Merve is a very good friend to “Grant”. He has been with “Grant” throughout his cancer and drives him to many appointments. Merve took him for a walk and said he would come every day to walk him. Merve went away to Bermuda for the winter.
In December we often walked to the elevators, rested there, and then walked back to his room. He is using a walker all the time and it’s very tiring for him. He seems to have lost all control of his bowels. While we walk his diaper usually falls off and he has to call for the nurse to help him get it back on. This must be a very difficult part of his illness, having to wear diapers and be so helpless in these situations. He often has an “accident” while we are walking.
On my visit of December 15 he rang twice for a nurse or orderly to help him move up in his bed. They don’t come as quickly as they used to. He rings the bell often. I tried to help him and moved him a little. We got a radio out of his night table and put batteries in and listened to it.
On December 28th we went for a walk, longer than usual, which included going up and down 3 stairs. He had a very hard time going up the stairs. We walked the complete length of the floor. He expects to get a 2-day pass to stay at home during New Years.
My first visit at Mt. Sinai, in the palliative ward is on January 12, 2000. There’s a much brighter atmosphere than at the hospital. He’s starting physiotherapy Mondays and Thursdays. There appears to be lots of staff and he gets more personal attention. “Grant” feels better. He feels like he could walk without the walker. He says that when he rings for a nurse two come. This will soon change. The VON nurse says his loss of bowel control is a result of a tumor, not laxatives.
“Grant” seems more alive in his new surroundings. We go for more walks. He’s anxious to start physiotherapy. He has hope. Erlene called while I was there. Some friends have told her that Mt. Sinai is too far for them to visit.
One day “Grant” was eating when I arrived. After he ate he asked me to take him for a walk. The wheels on the walker seemed to stick, and he struggled. The head nurse saw us and remarked that a physiotherapist should accompany him. She immediately went for a wheelchair and told him to sit in it. I could see that he was disappointed. He asked me to push him and he would tell me where to go. So he gave me a guided tour around the hospital and pointed out the various places he knows. Then he was ready to go back up to his room. I helped him get into his bed, but he couldn’t get comfortable so he rang for a nurse to move him. After the nurses moved him, he complained: “They just threw me in here.”
It is the end of January. I notice that he is very weak now. He talks very slowly. He cannot even move himself in bed, even asking me to move his legs and untangle the blankets around his feet.
By mid February he cannot move his right leg at all. He told me that he thought his right shoulder was broken. He pushed the call button for a nurse. They don't rush to come now. Significantly, he said, "I think I'm going soon." He says his friends are not coming any more. He knows that his bones are like Swiss cheese: full of holes.
“Grant” has a sling on his right arm. His weakened shoulder bone is fractured due to the spreading cancer. He apologized for not being able to talk too much. I sat down and watched TV with him until he fell asleep.
It is the last week of February. He can't use his right hand or arm. He cannot feed himself. He asked me to move him several times to help him get comfortable. He can't move either leg. He asks me to move them around and bend them for him. He is heavily drugged with morphine.
He won’t wear the sling and keeps asking me to pull his arm. I pull slowly but firmly until he feels pain. That's what he wants me to do. We do this often. He also asks me to turn him, straighten his legs etc. His mouth is very dry and full of mucous. The nurses have left an open can of Ensure on his bed table. They don’t have the patience to feed him properly.
Erlene had the morphine stopped. He is getting another painkiller. I notice that he doesn't use the call bell anymore. He relies on visitors to meet his needs.
On March 3rd I spend most of the visit trying to get him comfortable in his bed. We get a nurse and I help her pull him up to the head of the bed. He sends me for more pillows and I put first one and later another behind his back until he says that he's comfortable. He asks me to put my arm in front of him so he can try and pull himself up on it. It is very painful but he wants to do it. While I feed him some tears run down his face. I don't know what they mean. I wipe them off. I wipe the mucous from around his lips.
It is mid March. He wears a catheter because the nurses are afraid to move him too much while changing him. He wears a patch for the pain in his right shoulder.
He asks me: “Get me out of here”. I say, “I can’t. Where do you want to go?” “Let’s go for a walk”. “You’re not strong enough now”, I reply.
His wife comes when she can and feeds him lunch. She is very assertive with him and feeds him whether he seems willing or not. When he’s had enough he closes his mouth tightly.
One day he asked me to phone one of his friends. I tried, but the numbers he was giving me were not valid.
He then requested paper and pen and attempted to write his request down. He could not manage to mark anything discernible on the page...only scribbles. He doesn’t have the strength or coordination to hold the pen properly for writing. When I try to pull either the pen or the paper from him, he grips them tightly so as to not let them go. He spent half an hour doing this, concentrating, but the only result was scribble. Talking is too hard. Writing is impossible. He’s trapped in a body he is losing control of.
It’s the end of March. When I visit he keeps repeating the same phrases but I have a hard time interpreting them. He keeps asking, “take my sleeve off”, meaning his sling. It’s not on him. I tell him so, He says “hold on tight”. I hold his hands and he wants me to pull his arms
In early April he is speaking louder but it’s still hard to understand him. He can’t put out the effort to speak clearly. His mouth is very dry and full of dry phlegm. I wipe phlegm off of his mouth and chin. I offer him water and he drinks 2 glasses.
He still asks me to pull at his arms. I let him hold me and then I pull only as far as he can hold on. He asks me to put his shoes on so we can go. I tell him that we can’t.
On April 14, when I arrive on his floor, I see that Merve is back from Bermuda. When I get to the room his mother is sitting by his bed, holding his hand. “Grant” does not look good. He’s very thin and having a lot of trouble communicating. He’s almost impossible to understand. His mother is angry because Erlene hasn’t been honest about “Grant’s” condition. I don’t believe that she has been honest with herself. He’s a lot worse than his mother had been led to believe. She said she’d stay with him for a while, depending on his condition. She’s evaluating that day by day.
I went a little earlier on Tuesday, April 18th, hoping to be alone with “Grant”. When I arrived the Pastor was sitting beside his bed. The Pastor and I talked over “Grant”, one on each side of the bed. At times we were each holding one of his hands and pausing to try and hear what “Grant” would try to say. “Grant” sleeps more and coughs more. The coughing is an effort.
On Good Friday, I arrived just after 11:30am. “Grant” was alone. We held hands; I gave him a glass of water. I adjusted him and the bed position so we could be closer. He often repeats the name “Jesus” and says “soon, soon”.
On Saturday April 29, “Grant’s” mother was there. “Grant” was asleep and his breathing was labored. He didn’t wake while I was there. There were tubes in his nose for the first time.
Erlene called Easter Sunday morning to say that “Grant” had died peacefully in his sleep last night.
That, briefly, was my first experience as a Pilgrim Project volunteer.