At Hospice Northwest, we acknowledge the rewarding but difficult role of the caregivers and celebrate the differences they make in the lives of others. This blog offers an opportunity for caregivers to share their stories, poems, images or quotes that describe their caregiving experiences, while maintaining full confidentiality for those in their care. If you are a caregiver who would like to share your experiences, please send your submission for consideration to firstname.lastname@example.org We will screen all submissions.
They say you learn something new every day. In her final years with us, my mother taught both my wife Katherine and myself something new every time we visited. The journey of dementia is a difficult one, but I think many of our challenges came from our initial inability to understand the language and dance steps of the disease.
I recall those difficult early days when Mom first moved into her new home in long term care. We were paralyzed with fear and discomfort whenever another resident wandered into her room. These folks were clearly confused and very curious about us. It seemed that everywhere we went, we had an entourage. In those early days we had to learn the art of redirection if we wanted to visit Mom without interruption. In time, we came to take these interruptions in stride and to deal with this cast of characters with humour and compassion. Those experiences proved to be only the beginning of a huge learning curve.
Over the years, as Mom declined and communicated less, there would be other lessons to learn. We wanted her to have the best life she could and we knew that companionship was vital to her wellbeing and enjoyment of life. Communication with her was often wordless. We would hold her hand, comb her hair, or listen to music together. We learned through trial and error what would make her calm and what would make her laugh. With close observation of her face and physical reactions, we worked through those days together.
Along with our visits, Mom had daily visits from Dad. Toward the end of her life we asked for and received help from Hospice Northwest. When mom’s volunteer Elsie was introduced to us, it became very clear that her friendship and time with Mom would become an invaluable part of her care. Elsie played a very supportive role in Mom’s last days and we will be forever grateful to her for that.
Submitted by Larry Dicks, Hospice Northwest volunteer
I have prepared this story for use by Hospice Northwest because I want to give readers an appreciation of how my personal life has been enhanced by volunteering with Hospice Northwest.
I met my current client in August 2015. “Drew” was a 45 year old man with an end stage brain tumour, living in an apartment that was in absolute disarray and in desperate need of cleaning. The windows were covered with blankets pinned to the wall, blocking all natural light. The only air movement came from a ceiling fan that chattered away incessantly. The stench of dirty clothes and rotting food filled the room.
You may wonder what on earth his living conditions have to do with his disease process. I’ll tell you. Drew lost his vision as a result of his brain tumour and by the time I met him, had gone completely blind.
I grew to love and respect Drew and was determined to help him achieve a safe and good quality of life in his remaining time. Drew has no family in Ontario and his friendships were not sustained during his debilitating illness. He literally has no-one else.
Advocacy with many community resources was necessary, including his landlord, the Ontario Disability Support Program, Meals on Wheels. Personally, I accessed CNIB resources to learn how to communicate with him. I even learned the art of moving about my house blindfolded, with a walking stick, which allowed me to empathize even more with Drew’s situation.
Next steps included cancelling unneeded services, selling his vehicle, sorting through mounds of mail, opening a line of communication with his bank to monitor anything unusual, and most importantly, rescheduling missed doctor’s appointments. Drew’s contact with the outside world was basically non-existent as he was incapable of using a phone except to answer it if he was awake and could reach it in time.
On one of Drew’s last visits to his doctor in late November he was confronted with the harsh reality of his tumour in a manner I thought, at the time, was extremely blunt. Drew asked if he could have another operation to make him normal again. There was a pause that seemed to last an eternity. The doctor’s answer was short and blunt: “Unfortunately I can’t give you 2 new eyeballs and a brain. You will live to see Christmas no problem, Valentine’s Day just a slight chance, and very unlikely you will be around for Easter”.
Although this exchange was awkward and painful, it allowed Drew to shift his perspective and adjust to the reality of his condition. Then the seizures started, which he survived to the surprise of his physician and the team in ICU. Drew has moved back and forth from home to hospital, and is now residing in the hospice unit at St. Joseph’s Hospital. With each move comes an almost incomprehensible adjustment to new people and surroundings. I can only hope that consistency and dedicated support will allow Drew to die a peaceful death.
Submitted by Peter Strawson, Hospice Northwest volunteer
In 2011, being long retired and feeling somewhat bored reading and watching TV, I noticed a newspaper article about Hospice Northwest and their need for volunteers, particularly of the male gender.
I was already familiar with Hospice Northwest from my volunteer days with the United Way when I served on a committee that investigated the agencies to insure that the available funds were fairly distributed. I recall giving Hospice Northwest high marks for the work they did on a small budget.
I telephoned Terri, the volunteer coordinator, who informed me, much to my surprise, that to become a volunteer I had to attend a 3 month course of instruction. After getting over my initial shock I still applied and found the course to be extremely interesting with great speakers and presenters. I even learned that humour can be associated with one’s last days.
I’m now a Hospice veteran of 4 years service. Although my friends are usually too polite to say so, many of them think it strange that I volunteer for Hospice Northwest as they think that what I do is sit around and commiserate with dying people. In reality, I have found all the clients that I have met, alas all guys, have been friends with interesting stories of past days and with most of whom we had mutual acquaintances. We spend our time together joking and comparing stories from our mutual pasts with interesting friends.
Being a bit of a “showboater” it’s good to have an occasional new audience for my worn-out jokes and stories. In turn I get new material from my hospice clients. Although they are aware of their impending mortality I have found all my clients have faced the future with courage and humour.
So far it has been a great experience.