Our Journey with Dementia

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.

How Hospice Volunteering Changes Lives

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.

Caregivers Blog – How to Submit a Caregiver’s Blog Post

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 We will screen all submissions. 

On Becoming a Hospice Northwest Volunteer

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.

Louise Wilson

Louise Wilson

When your world has been unexpectedly turned upside down with a life-threatening diagnosis, the new world of medical appointments, tests and procedures presents a harsh, cold reality.

Family and friends, while offering support in whatever way they can, are coping with the inevitable changes the crisis brings to the family unit as a whole, and may be unable to understand totally or to listen without judgment to the ongoing doubts and fears of diagnosis. But amidst this time of chaos, confusion and uncertainty, the Circle of Friends offers unconditional support.

From the very first visit, you are welcomed into the group as if you were an old friend. While opportunities are offered to vent, to share your worst fears, or to be reassured by survivors with similar experiences, the Circle offers most of all the encouragement to just ‘be you’. Whether you choose to talk openly about your experiences, or sit quietly observing, just soaking in the warm embrace of friendship, the choice is always yours.

While the medical community provides traditional treatments, the Circle has experienced volunteers who offer complementary healing therapies (Therapeutic Touch and Reiki) to facilitate healing and relaxation during a very stressful time. In a nutshell, the Circle of Friends offers an extended ‘family of friends’ in a very positive setting of shared laughter and tears during difficult times.

Robert Fenton

Robert Fenton

To serve each other, to respect each other, to trust each other, to honour each other, to love each other, to cooperate with each other, to care for each other, to forgive one another, to focus on people’s good, to laugh with one another, to learn from one another, to pray for each other – these are all acts of love.

(Native American Teachings) This is what Circle of Friends means to me.

Anne Lappalainen

Anne Lappalainen

Hospice volunteering has given me a new purpose in life. I’ve always wanted to help others, and now I feel like I am. It’s been such a wonderful experience and I’ve met such wonderful people! It’s changed my life!

Katherine Poulin

Katherine Poulin

A few years ago, after my training with Hospice Northwest was over, I was paired with my first client in Long Term Care. I had a wonderful experience with that client and now I can’t imagine working with anyone other than a resident in LTC.

I have shared many afternoons with clients; sometimes we are alone in quiet reflection and other times we share a joke or two over a cup of coffee and chat with other residents who drop by our table. I have formed many treasured relationships and I look forward to visiting with them.

I first heard of hospice work over twenty years ago when my mother-in-law was volunteering with Via Vitae. They would eventually change the name to Hospice Northwest. She now has Alzheimer Disease and is a resident of LTC herself. When I visit her we sometimes talk about hospice volunteering. It is one of a very few subjects which still engages her interest.

Helena Pulki

Helena Pulki

Many residents in Pinewood Court that are at the end-of-life stage have received gentle visits from the Hospice Northwest volunteers. The partnership between the two organizations started in August 2009. Hospice Northwest trains and supervises the volunteers and they have been available to us after a referral has been made by our Home’s physician. Of course, the resident and family have to agree to this service.

The experience of being fully understood and listened to by another human being is one of our most important human needs. In long-term care, staff do not always have the time to completely fulfill this need. Hospice Northwest volunteers have proven to be a wonderful addition to our care team. They have been very personable, compassionate individuals that have followed the dying residents in their final journey. They have provided emotional support and companionship for our residents. They have reassured, advocated, held hands, read, prayed, brushed hair, helped to drink, brought in pleasurable items, taken the residents for walks, laughed and cried with the residents. They have also given family members a break from their care-giving duty and supported them in their grief. Some have become a family that the resident never had. They have become friends to all of us.

Hospice Northwest people have gone above and beyond their commitment to the residents and their families in Pinewood Court. We have received a number of “Hospice Boxes”, decorated cardboard boxes to give out to families when they are taking home the most precious items after a resident has died. Last Christmas, they also presented each of our 128 residents with a handmade sun catcher made out of beads and crystals, to be put on a window.

We strive to provide excellent care to our residents so they can live in dignity and comfort. We also aim to make sure that when the time comes, they die a good death. Hospice Northwest has been an excellent partner to us in this mission. We truly appreciate everything you have done for our residents and families!

Anita Sakiyama

Anita Sakiyama

Mom was diagnosed with lung cancer in December 2002 and began chemo in January of 2003. It was at the Cancer Centre that we first heard about Circle of Friends being offered through Hospice Northwest.

Mom immediately embraced the group and going to Circle became her passion. She rarely missed the bi-monthly get-together and feeling a bit sick never stopped her. Family and friends soon learned when “Circle Thursdays” were.

Mom found camaraderie among her new friends. With Circle of Friends everyone was suffering chronic or terminal illnesses, and they drew strength from each other. It made my family happy to see that mom could find such comfort and inner healing with the group.

Where the medical professionals treated mom’s bodily illness with drugs, chemo & radiation; Circle of Friends treated her spirit. It was like her “chicken soup for the soul”. Not only through friendship and sharing but also with relaxation therapies such as reiki, reflexology, meditation, therapeutic touch and the not to be forgotten famous foot massages!

People suffering chronic or terminal illnesses spend a lot of time in hospitals and clinics and it was always nice to have an environment in which to meet and relax with friends.

Another major appeal to me as a family member was to see how truly welcoming the group was to everyone. It felt more like meeting friends for coffee and lunch rather than as a “registered participant” of a group. I think everyone felt that they could share without being judged in any way for what was happening to them.

Lunch was always followed by “circle” time when the talking stick would go around and everyone would have a chance to share whatever they wanted to share be it a frustration, a joy or a pain. If you didn’t want to speak that was ok too. It was understood that what was said in circle stayed in circle.

Sadly, Mom passed away on July 8, 2004. Our family asked that in lieu of flowers people consider donating to the Hospice Northwest Circle of Friends program because it had meant so much to Mom. I would highly recommend attending Circle of Friends to anyone who suffers a chronic or terminal illness or to anyone looking for an opportunity to volunteer.