When a loved one is dying: Resouce kit can help gain control of a life out of control

PEC Community Foundation’s Brigit Stevenson with Terry DeRoche and Hospice Prince Edward’s Nancy Parks.

People who are dying and those who watch over them now have access to a single resource designed to ensure the highest quality of life in the time that remains.
An in-home Comfort Resource Kit has been designed by Hospice Prince Edward, in consultation with clients and caregivers, to give both comfort and information.
“The inspiration for this kit came before I was with Hospice,” said Nancy Parks, executive director.
At the time, Terry DeRoche was caring for his wife Johan through her end-of-life journey. Parks visited every Tuesday.
“Terry was an inspiration caring for Johan at home in her last few months. He, along with others, did an amazing job,” said Parks. “But I had questions along the way and didn’t know who to turn to.”
Parks was among friends who visited the couple’s home to allow Terry time to complete errands, grocery shopping and fill prescriptions.
“Every situation is so personal,” DeRoche said. “I’m with the Kinsmen and we get calls almost daily from within the community with questions and for funding trips to hospitals for people with cancer and heart problems.
“Johan was mobile at first, but as time went on, she needed things like a medical chair to be comfortable, a medical bed, a walker – all these things cost thousands of dollars if you go to buy them and the government doesn’t really let it be known how to access simple helpful solutions, like medication, for example. If you change from buying full prescription bottles to a weekly pack of pills to be taken daily, you can save a lot of money – especially when the medications change or don’t work out well before they’re finished.”
It was a match up with Hospice Prince Edward’s Joscelyn Matthewman that lightened his efforts.
“I call her my little angel,” DeRoche said. “I think a high percentage of people who are old, or dying young, shut out the world – even close friends – and don’t want to talk. Jocelyn was able to open the book on everything that was available, like the things in this kit, and she lightened my load one hundred per cent or more.”
“The kit was designed to respond to those who don’t necessarily need regular hospice volunteers,” said Parks. “It is full of practical items but most importantly, it is also about conversations.”
Parks said one or more Hospice volunteers would attend a family meeting with friends and family members and have a conversation about how they can support their loved one.
“The client would also be key and be involved. They need to have control over their life out of control and express their wishes and desires. From that,  a plan would be developed. Feeling comfortable asking questions is the idea behind it.”
As far as Parks knows, the kit is an original program plan that was piloted with a young mother in the community who is palliative and confirms to Hospice that the kit is a wonderful resource.
“The philosophy of hospice care focuses on living life until the end, rather than on the dying process,” says Parks.
The Comfort Resource Kits are built depending on the needs of a client but could include items such as a quilt donated by the Prince Edward Quilters’ Guild; skin cream, soothing music, or a room monitor, wool socks, straws, a resource book. Every kit will include binder organized to help quickly locate community resources, to help monitor equipment, to schedule visits from family and friends, a caregivers’ bill of rights and a journal for one person to communicate to the next.
“I was told by the oncologist in Kingston that I was one of the few people who would record and log every drug and pill and bowel movement, etc that were key knowledge for treatments,” said DeRoche. “Instead of spending time asking me all these questions every visit, I would just hand them the book and the nurses could see exactly what was happening with the pain medications. Something so simple as notes and schedules makes everything a lot easier.”
Funding for the kit was provided by the Community Foundation.
“Kudos to Hospice Prince Edward for putting this together,” said Brigit Stevenson, executive director. “My own grandmother passed away at home with a lot of help and care but there were still questions that could not be answered. A kit like this is all the more important when people don’t have the same resources but all have great needs.”

The Comfort Resource Kit is one of a variety of resources Hospice Prince Edward provides to help families and friends support a loved one during their end-of-life journey. Click here to find out more about Hospice Prince Edward and its services.