A Case Manager from Community Care Access Centre makes a referral to Heart House Hospice for a young woman and her family. Despite homecare and visiting nursing Sarah and her family are finding it increasingly difficult to cope with her illness and all the issues that relate to her illness. Sarah is 34 and was diagnosed with liver cancer eight months ago. Sarah is married with three children and her husband works long hours to support their family. Sarah worked outside of the home but due to her illness is not able to continue. Two of her three children are in school and the youngest age four is at home. Her youngest child was in daycare but the family is now dependent on one salary and there isn’t enough money to continue. Sarah and her husband have some extended family and they are helping as much as possible, but they are still struggling to deal with the day to day of life in the face of an unforgivable situation.

Sarah’s prognosis is not encouraging, having completed many rounds of chemotherapy she is weak, tired and discouraged. She is now at home trying to make sense out what future she has left. A Case Manager makes a home visit and determines from Sarah that she needs physical, emotional and spiritual support. Not only for herself, but also for her children and husband.

Following the assessment, a Volunteer match is found. Cheryl, a long term volunteer, is soon making regular visits. Along with homecare, visiting nurses and two other hospice volunteers, Cheryl becomes a vital partner of the caregiver team that is supporting this young family. As Sarah’s illness progresses other volunteers are brought in to provide transportation to her medical appointments and run errands for her when she is no longer able to walk unaided. After the initial assessment, and once the Volunteer is placed, the Case Manager meets with Sarah and her husband to help them develop a plan of care.

Sarah and her husband struggle to know what to tell their children and how to help them deal with the situation. A Hospice Case Manager meets with the older children. They already know that Mom is dying but are afraid to talk about it. They are worried about what is happening to their Mom and what will happen to them when she dies. Sarah’s husband feels guilty about leaving her alone all day while he works, but he has already exhausted all his paid leave and worries about how they will manage if he is not able to keep his job. He is relieved when Hospice can provide volunteers to stay with Sarah and their youngest child.

Sarah finds it hard to tell her family what she wants and needs. She tells Cheryl that she wants to die at home, with her family around her. They talk about her funeral and Cheryl goes with Sarah’s husband to make the arrangements. Sarah asks Cheryl to buy multiple birthday cards for her children and help her write messages so that they will have them when she is gone. Sarah is able to talk with her children and because of the support from Hospice; they are able to openly talk to their Mom about what is happening.

Cheryl and Sarah form a bond that death encourages – one of trust, hope and immeasurable support. It is Cheryl that Sarah turns to when she needs to talk about her hopes and fears. She does not want to upset her family. Talking with Cheryl helps Sarah to bring closure with her family and she begins to find a peaceful place. Sarah says she is no longer afraid of death. She tells Cheryl that she is sad that she didn’t have more time but grateful for the time she has had and grateful for the support from Hospice.
Sarah passed away peacefully with Cheryl at her side. It was a promise that Cheryl made early in their relationship that she would be there. Sarah’s husband and her parents were there too! So grateful for the support that Cheryl gave to them all.

The Hospice Case Manager and Cheryl continue to visit the family after Sarah is gone. Their grief is overwhelming at first! Sorting out the changes in their lives takes time and Hospice is there in the first few months after Sarah’s death to help with their transition. In the end Sarah had the chance to have her end-of-life need provided for in her home, with her family and as she choose! Heart House Hospice made that possible.

At Heart House the client and their family are at the center of everything we do! Dying is a part of living. When a client is referred to Heart House, we know that we cannot change their destiny. However, we are presented with a unique opportunity to impact on their path of living while they journey to their death.

Heart House, who gave such profound help to my wife and myself, came into our lives when my wife was in her final year of a long battle with breast cancer. At the same time, I was recovering from aortocoronary by-pass surgery. For both of us it was a time or personal chaos and fear.

We had many skilled and dedicated helpers; doctors, nurses, homemakers, physiotherapists, occupational therapists. All were there to do specific professional tasks for my wife. They came, did their tasks with great expertise and they left. No one had much time to listen to talk.

Then this Volunteer from Heart House came. She introduced herself and said, “What would you like me to do?” So began a very incredible year’s association. She “did” all sorts of things; cooked casseroles, baked cookies, taught me to mend socks, drove my wife from hospital appointments. But mostly, she spent quiet time talking with my wife and listening to her. At times of fear or confusion, she was able to bring peace and clarity to my wife. Her presence was calming and kind, and very strong. My wife drew on her presence.

I am a physician and, as such, “know” about illness and dying. I also knew very well how to deny this painful knowledge about my wife. The Volunteer from Heart House gently, and with great compassion, helped me to come to terms with my wife’s journey towards death.

Our Volunteer from Heart House gave my wife and me all the qualities that our excellent professional caregivers could not; peace, calm, acceptance and hope for the future. It was, for both of us, a unique experience.

(This article is being reprinted with the permission of Mississauga News)

Mississauga’s Cathy Churchill is a shoulder to lean on for Cindy Weir of Meadowvale.

Churchill, a Heart House volunteer, walks where angels fear to tread.

She’s not helping Weir die. Rather, she’s helping her live with dignity, despite the indignities of terminal cancer.
“We’re not about dying. We help people live,” said Hospice executive director Laurie Bennett.

“Three cheers for that,” said Weir, 38, a woman who might not live to see Christmas still but took time to tell her story during Hospice Awareness month.

Weir was diagnosed as having breast cancer in June of 1998 and, despite surgery and radiation treatment, the cancer has spread to her bones and her blood.

Weir, mother to 11 year-old Ben and Sheila, 9, won’t take further treatment.

“It would be pointless,” the former small business owner said calmly. She’s also a long-time sufferer of Crohn’s Disease.

Weir and Churchill shared a coffee last week. Churchill comforted Weir when, without warning, she doubles over in pain that is hardly dulled by heavy doses of morphine.

For the past year, this dynamic duo has been having some fun together – shopping, having lunch and chatting. Churchill was there for Weir to lean on when her husband moved on with his life with another partner. Weir now lives in an apartment five minutes away from her family. Her kids visit regularly but she can’t care for them, and her pain frightens them, she says.

Hospice and Churchill have been there when the chips are down and the road ahead seemed short and lonely to Weir. Hospice helps Weir cope with life as she battles her disease.

Though it’s tough for Churchill, who knows she’ll feel grief when Weir dies, she thanks Hospice for allowing her to become friends with the free-spirited Weir.

Hospice supports its volunteers, says Churchill.

For others who might want to help without stepping into Churchill’s shoes, there are lots of other volunteer jobs that need doing at Hospice.

The Hospice caseload has doubled in recent years, helping 641 clients annually. More than 300 volunteers train for nine weeks to help with clients aged anywhere from six weeks to 106 years.

Sadly, the average age of Hospice clients is 35 to 55 years, said Debbie Abate, Weir’s case manager and a counselor to her husband and kids.

At Hospice, staff like Abate and volunteer co-coordinator Brenda Bugden bring people like Churchill and Weir together and co-ordinate other support services like nursing and home making.

They help keep people with terminal diseases in their homes, comfortable and better able to cope with their fate.

Mississauga-based Glaxo Wellcome, which supports Hospice across Canada, hopes to spread that good news about Hospice through an awareness campaign this month.

Heart House Case Worker, Debbie, picks up her phone. At the other end she hears the gentle, tired and anticipatory voice of a young woman whose daily life has become chaotic. She is physically and emotionally spent.

Leslie tells Debbie that her mother has cancer and only a few weeks to live. The doctors are unable to help her further and as Gale’s wish is to die at home, Leslie honours that choice. The reality is that mom’s home is Leslie’s home, mom’s main caregiver is Leslie and Leslie is doubtful and anxious about her ability to provide the kind of care that Gale needs.

Leslie’s husband is supportive but works long hours. Leslie’s son has a heavy schedule in his final year of high school. They do what they can. And then there is Thomas, her precious 2-year-old child, who has Down Syndrome. Caring for Thomas demands most of her energy at the best of times.

Gale , Leslie’s mom, is restless. She needs someone to sit with her, talk to her and calm her. Debbie makes an appointment for a home visit the next day.

As Debbie begins to conduct her assessment Leslie runs upstairs to check on her mom who is trying to get out of bed and seems confused. During the hour that Debbie is there Leslie repeats the stair climb more than fifteen times. She admits that she has not slept for almost three days. She wants to support Gale but she also needs to care for Thomas and the rest of her family.

Debbie’s more than ten years experience with palliative care patients helps her to recognize the real sense of urgency here. If Leslie is to be of help to Gale she needs some immediate relief. A respite volunteer placed in the home could stay with and support Gale and allow for a period of rest for Leslie. Heart House normally takes a week or so to select and place an in-home volunteer, after a referral but today time is of the essence.

Debbie consults with Anna, Coordinator of Volunteers. Anna places an afternoon volunteer; Cathy and an evening volunteer, Brenda to visit Gale that same day. They are experienced volunteers whose calm demeanor and compassionate manner will suit this family’s situation. Cathy spends the afternoon with Gale. At the end of her visit she alerts Anna to the fact that although there was the suggestion of weeks to live for Gale, Cathy feels that the end may come sooner.

Brenda arrives for her visit and while Leslie rests for an hour or so, Brenda sits with Gale. Brenda is trained to provide clients, who wish it, with therapeutic touch therapy.

Therapeutic touch is a non-invasive, holistic approach to healing using the flow of energy to comfort and promote relaxation and calm. It is given with the hands, a few inches away from the body or with hands lightly touching the body to assess the body's energy field and to correct imbalances and to provide peacefulness.

As her shift comes to an end, Brenda senses that she should remain. Leslie joins her, and watches as Brenda eases Gale’s restlessness with therapeutic touch. She talks to Leslie about giving her mother permission to die, encouraging her to quietly speak to Gale about the love they have shared. Within the hour, sustained by her daughter’s presence, Gale passes away. She does so easily, gently and with the knowledge that her family supports her need to let go. Leslie is comforted by the fact that she has honoured Gale’s wishes.

This true story happened in September 2004 and illustrates a powerful end-of life experience. It was a gift for mother and daughter. It was the type of death that almost 90% of Canadians wish for themselves and yet 75% of our population dies in hospital due to the lack of in-home care.

Heart House is a not-for-profit, volunteer-based organization providing in-home support and variety of individual or group programs to people and their families living with a life-threatening or terminal illness. Since it was established in 1985, Hospice of Peel has served over 6,500 terminally ill and over 21,000 of their family members in Mississauga and Brampton. All of our services are provided free of charge to the client and their families.

Her name was Valerie. She was 31 years old, married and battling cancer. It was 1985 and Valerie had been in and out of Mississauga General Hospital (now Trillium Health Center) for some three years, receiving cancer treatment in her fierce, but unsuccessful battle against melanoma. Valerie had been told that she did not have much time left…. approximately three months. Valerie made it known to her family that she did not want to die in a hospital. She had spent enough time in the hospital and she wanted to be at home with her family.

At that time, it was rare for cancer patients to choose to die at home. There were not many palliative care resources or community support services available nor was there much funding to help make dying at home comfortable. In fact, the whole subject of palliative care (i.e. reducing suffering without curing, relieving pain to improve the quality of living and dying) was still a relatively new and somewhat uncomfortable frontier for a lot of people including many Health Care Professionals.

There were many things that Valerie and her family needed to arrange in order for her to continue her end of life journey at home. Valerie received support and guidance from the hospital’s palliative care social worker, Laurie Bennett. Unfortunately, during this time, government cutbacks were forcing hospitals to reduce services in their social work departments and palliative care was one of the prime targets. It was not perceived as an essential medical service. Palliative care was a much needed service and the timing of this cut was not going to make things any easier for Valerie and her family or others facing and dealing with a terminal illness.

As chance would have it, Valerie’s decision to move home for her final months, coincided with Laurie’s efforts to start an independent hospice organization in Peel. And so it was that Valerie became the very first client of Hospice of Peel. Laurie, along with another colleague from the hospital and some supporters from the community (friends, doctors, nurses, ministers and funeral directors) pulled together a team which helped Valerie, her husband Douglas, and her out-of-town family through her final days. Valerie’s husband was very supportive and her parents visited from Ottawa, regularly, to help with the home care and to give emotional support to her and Douglas. At first, all that was needed was some counseling and housekeeping support, but as Valerie’s melanoma progressed, the needs became greater and the services that Laurie and Hospice of Peel provided increased.

It was an emotional time as Valerie and her family made plans to implement her final wishes. The family called Laurie when they could see that Valerie’s time had come and Laurie was able to join them to say goodbye. Valerie passed away at home in the comfort of her own surroundings, with her family and friends by her side. Her final weeks had not been easy, yet she held on to her desire to remain at home. Her wish came true. The journey had been a success and, at the same time, she had played a special role in the beginning of Hospice of Peel.

In recognition, of our 20th Anniversary, this tribute was prepared by Brenda Bennett-Learmonth in collaboration with Bob Edgar and Valerie Futner.

Hospice of Peel would like to thank the family and friends of Sheila Hawkins for their extremely generous donations made in memory of Sheila.

Sheila courageously battled breast cancer for 6 years, supported by her devoted family and friends. In December 2004 she was referred to Hospice of Peel. At this time her cancer had returned. Always extremely active and involved in her community, her progressing illness meant that she was now more and more confined to her home.

After meeting with her Hospice Case Manager, Sheila was assigned a Hospice Volunteer, Ruby. The match was an excellent fit and the two soon formed a strong connection. Ruby provided company and support to Sheila, and her weekly visits allowed Sheila’s daughter a much needed break at the gym. Ruby’s visits continued up to the time of Sheila’s death.

Ruby shared her experience as Sheila’s Hospice volunteer at Sheila’s memorial service. “Sheila was an inspiration to me - such a strong and positive woman who tried to be as independent as possible, no matter how ill she became. What she wanted from me was simply companionship – someone to talk with and share – and we shared a lot of laughter, thoughts, ideas and some tears. She taught me what life was truly about – living one’s life with love and passion - something that came so naturally to her.”

Recently Sheila’s friends and family got together and decided that a fitting tribute to Sheila would be a bench at the Centennial Park Conservatory in Etobicoke, one of her favorite places. Should you be visiting the beautiful greenhouses there, please enjoy Sheila’s memorial bench (pictured above).

Hospice of Peel was privileged to have Sheila and her family as our clients. Their generous support of Hospice will enable Hospice staff to continue to support families facing terminal illness in the Region of Peel.

In September of 2003, Hospice of Peel received a call from the young wife of an ALS patient. Her husband was 58 years old and they had two teenage daughters at home. Steve was diagnosed in the fall of 2002 with ALS –Amyotrophic Lateral Sclerosis, also known as Lou Gehrigs disease. ALS is a motor neuron disease. Sandra realized that her husband’s illness was progressing.

The Hospice of Peel case manager made a home visit and spent time with the family gathering information and talking about supports they may need now and in the future.

Steve could be left alone for short periods but his family was concerned about him during the day. Steve was unable to go to work but did a lot of his work from home. Sandra worked during the day and the children were in school.

Due to the neurological effects of ALS, Steve’s hands had only minimal strength. He could still communicate verbally but was getting weaker. He used a walker to get around but risked falling. Steve had a motorized wheelchair ordered.

Steve and Sandra agreed to have a Hospice volunteer to come in weekly to give Sandra some respite and peace of mind, but also some emotional support for Steve.

Steve had some projects in mind. He wanted to work on a personal life history and legacy for his family. Steve was very aware that ALS would take his life in the near future.

Hospice of Peel sent a volunteer who had some personal experience with ALS in her family. The family felt comforted that the volunteer had a personal understanding of the unique challenges that ALS presents to clients and families.

There was an instant connection. His wife felt comfortable going to work and taking a bit of caregiver time for herself. She knew Steve would be safe and well cared for. The volunteer started to help Steve with his computer work and putting his life story together. As Steve’s condition declined the volunteer continued to help with some of the physical challenges and emotional concerns. Hospice of Peel worked together with the family and communicated with other social service agencies involved to plan for the best support. Within a year, Steve had gone through many changes in his condition. He needed more assistance moving around, eating and talking was becoming more difficult. The volunteer helped him adjust to changes. The volunteer’s return to school necessitated Hospice of Peel to make a new match for Steve. Another volunteer with similar experiences and common interests with Steve was placed.
The transition worked beautifully. Steve was declining and needed more and more help. He had some new devices for the computer and his wheelchair. The volunteer helped him with all the final planning of his life’s legacy and Steve finally completed his book. Through many hours by Steve and the volunteer his book was finally printed. With further deterioration in health, Steve needed more support. Steve now needed help to be fed, with personal care and found it very difficult to talk and communicate. But in their own way, Steve and the volunteer did this well. Hospice of Peel also offered Therapeutic Touch as a complimentary therapy that helps promote relaxation and pain control. Sandra took the TT training at Hospice of Peel so she could offer TT to her husband. She felt that by doing this for him, she was able to contribute to his well-being. Steve died recently. The Hospice of Peel volunteers and staff attended Steve’s funeral. Hospice will provide bereavement support when the family is ready. The family was so grateful that Hospice of Peel was able to support the family and client through their journey and afterwards.

My name is Allyson. Two years ago I was diagnosed with lung cancer. I am 45 years old and have two children 16 and 13. I have declined steadily since my diagnosis and have been told that I do not have much time to live. My husband is finding it very difficult to cope with this news. We were high school sweethearts and had planned to retire early to enjoy our middle aged life travelling the world and doing many of the things we had put on hold to pursue our various career paths. Due to my ailing health I am unable to do much for myself any more. My children are scared and I do not know how to talk to them about the fact that I will not be around for much longer. I also cannot speak to my husband because he refuses to accept that I am in declining health and he is not open to discussing this with the children either. I know that my family needs to prepare for the inevitable and while I need someone to help me with the practical aspects of my day to day life, I am much more concerned about my family and their preparation for the long road ahead.

A referral was made to Hospice of Peel on my behalf. A Hospice Case Manager came to visit me at home and talked to me about my fears and concerns. She offered to help me connect with a number of support systems in the community to meet my needs. Together we decided that I would also benefit from having a trained in-home volunteer. Through the office a volunteer was matched with me.
My Hospice of Peel volunteer has been a wonderful addition to my life. Together we have written out my wishes for my husband so that he knows how I would like to be sent off when I die. The volunteer has also helped me write down my life story for my children. I have told them about my childhood, teenage years, how I met their father and what a joy it has been to watch them grow up. Oddly, before my diagnosis I did not speak to them much about my life but instead concentrated on learning about them and the people that they wanted to become. I wish I had talked to them more. Thanks to the volunteer they will have a record of my life for themselves and their children to come.

Throughout my conversations with my Case Manager and volunteer I realized that I needed to reconnect with my spirituality. As a child I was very active in my church community. Somewhere along the way I became disconnected from this part of my life. I never realized how much I missed my spiritual connection and now make time for it. Through this I have found strength and peace. I suppose this is why I feel ready. The Case Manager continues to check in with me on a regular basis to see my family and I are doing and how everything is working out with my volunteer. This is great additional support for me.

I have been assured that when I am gone my family will still have access to Hospice of Peel. If my husband and children choose, they can connect with the bereavement support coordinator. This is someone with whom they can talk to about their feelings. This gives me relief and hope also. I am thankful that I have Hospice in my life. I hope that others like me will be able to find a companion and understanding when they face this same journey.

Hospice of Peel received a call from another community agency in September 2004. A referral was made for a young boy 14 years old. He was diagnosed 9 months earlier with a rare genetic disease called Prion Disease (Hereditary Ataxia). This illness affects the brain, which affects the entire body. There is no cure or treatment for this disease. Death usually occurs within 1-2 years.

A Case Manager from Hospice made a home visit to see Sam and his Mom Sara. Sara shared what Sam was going through and that 3 of her siblings, 2 sister’s and one brother had the same disease and had died within the last 2 years. Now Sara and her family were facing their son’s impending death.

By the time Hospice became involved, Sam was in a wheelchair, could not walk, talk and had very limited use of his hands. Dad was working long hours and they had another son who was 11 years old. Sara was the full time caregiver for Sam. Sam needed 24 hour care. Sara had help from other community agencies and CCAC.

They did not have much family in Canada and help was limited. Sara was looking for some practical and emotional support as well as respite. Hospice matched 2 volunteers with Sam. One volunteer would go in and help Sara with some of the practical needs, someone for her to talk to and give her some respite to take a break. This volunteer would also spend some time with Sam playing video games or games on the computer. The other volunteer was providing some support for Sam’s brother.

Hospice worked closely with other community agencies to provide as much help as possible. Sam was rapidly declining. About a month later, Sara was starting to have some concerning symptoms. She was having trouble with her walking, and co-ordination. Their greatest fear came true; Sara was diagnosed with the same illness as her son and siblings. This family was now dealing with a young mother and wife in her early 30’s and 14-year-old son and brother who were terminally ill.

Hospice placed 2 other volunteers to provide help in the home. Since Sara was Sam’s caregiver, she needed help with her care and someone to help Sam at the same time. This family was devastated. The volunteers provided Sara with the practical support, comfort and emotional support needed. Hospice worked to find additional ways to support Sam’s younger brother, with a volunteer, sourcing camp duringt March break. Camp provided his brother a break from the care giving at home. Another volunteer visited around dinnertime; to help with feeding and dinner and give dad some respite as well as some much needed emotional support.

Sara and Sam struggled to stay at home together. There were times when they were both in the hospital, but most of the time they were side by side in a hospital bed in the home. As long as Sara could see Sam she was happy.

As time went on Sara and Sam were declining. Sara and Sam needed more help. The volunteers and Hospice continued to help along with the other agencies involved.

In November of 2006 Sam passed away. The family did not have time to grieve as they were still caring for Sara. Sara died 5 months later in April of 2007. Hospice staff and volunteers attended both funerals. The family will have access to Hospice bereavement support when they decide the time is right. Dad has expressed how grateful he is for the support from Hospice of Peel and does not know what he would have done without it. He truly appreciates all the support and care Hospice provided along with all the other agencies. Dad and his younger son are coping as well as can be expected. They are now feeling they can continue on. They are going back to their homeland in December to have a ceremony with family for Sara and Sam.

Hospice will continue to keep in touch and provide support as their grief journey continues.