March 29, 2012, started out just like every other day for my husband Geoff and me.

On that day, he suddenly had a lot of trouble breathing and was always short of breath. This went on for 22 months. We were to find out that Geoff had a rare form of respiratory ALS (also called Lou Gehrig’s disease). He had the type that paralyses the breathing muscles.

Geoff needed a ventilator to breathe 24/7. He needed medicine and his airway suctioned 4 times a day to bring up secretions that settled into his lungs. He could only eat soft food by mouth. Over time he wasn’t able to do that anymore and needed a feeding tube.

Despite these challenges, I tried to make life as normal as possible for Geoff. Because his breathing machine was portable, I was able to drive us to visit friends and family in California and Vancouver Island.

Geoff became much sicker during our last trip to California. Even with the treatments, his lungs ’couldn’t clear the secretions. We were to soon learn that he only had about 1 month to live. Even though he ’couldn’t talk, he used his iPad to tell me that he ’didn’t want to spend his last days in a hospital. He wanted to be at home with family and he wanted to see his grandchildren again.

With the support of his ALS doctor, respiratory therapist, and the ALS team, I took Geoff home.

The next few weeks were exhausting for both of us, as Geoff rarely slept. Thankfully I had help from family and a healthcare aide. I call them my guardian angels. Without them, I ’wouldn’t have been able to make Geoff’s wish to die at home come true.

His last 48 hours were very hard. Because his lungs ’couldn’t use oxygen well, he became very confused and ’didn’t understand why he was having trouble breathing. With my healthcare background, his ALS doctors, and respiratory therapists, I was able to adjust the settings on his breathing machine and give him the strong medicine he needed to keep him comfortable. This was such hard work but I wanted to do it so I could honour his wish to not go to hospital.

The EMS Palliative and End-of-Life Care Assess, Treat, and Refer Program is such an important program because it helps families like ours keep our loved ones at home, especially when dealing with complex medical needs. ’They’re only a phone call away and can give you the extra support you need as your loved one’s health fails.

Geoff passed away May 7, 2014, at 8:34 in the morning. I sat by his side as his pulse faded away. ’It’s something that gives me great peace. It can never be taken away from me that I was able to fulfill Geoff’s wish to spend time with his friends and family in the last few days of his life.

Geoff always had a smile and a hug for his grandchildren. The day before he died, he gave each one a big hug, even though he had trouble using his arms. They will have that memory forever. There ’isn’t a day that goes by that they ’don’t talk about Grandpa. Because ’they’re young, most of their memories are from during the time he was sick. But they are all good memories, including that last hug.​

Neal, a beloved member of our family lived with the challenges of Multiple System Atrophy [MSA], a rapidly debilitating form of Parkinson’s Disease for more than five years. Neal and his family enjoyed life and managed at home as fully as his declining physical abilities allowed, due in no small part to the support of AHS Calgary home and community care including the palliative team during the final weeks.

The professional, competent, and compassionate care our family experienced included and was not limited to:

• Excellent communication of information about client and family situations, needs, and priorities. The circle of palliative care providers had ready access to detailed and current status and assessments. Our confidence in the recommendations and services offered was boosted by not needing to repeat the same details for each provider and the feeling that the team already knew and understood what was needed.
• The Palliative on-call RN used this information and her phone assessment to quickly initiate a palliative team referral. Barely 12 hours later a palliative physician and palliative care RN arrived for a home visit aided by this seamless flow of information. The actions and care that resulted reduced our stress significantly. Our family felt well supported throughout these difficult times.
• The Community Paramedic Service and Home I.V. Program was an invaluable support. Neal wanted to remain at home. The complexity of his needs and past experience in acute care had taught us that he managed much better at home. The community paramedics filled this huge gap, allowing him to receive symptom treatment at home where he most wanted to be. This is client-centered care at its best.
• Follow-up visits and consults by the home and community care palliative team, RNs, physicians, and pharmacists, were all delivered with this same client-centered approach. To experience their collective skills and expertise collaborating around our family’s kitchen table was amazing. They problem-solved ways to give Neal the best quality of life during his remaining time.

Care planning started with conversations with Neal and his family about what it was he wanted for his final days and what he did not. Then the team, the RN, the physician, his neurologist at the other end of a phone line, aided by the pharmacy, set to work to make good things happen for Neal and the family.

And they succeeded.

Thinking back over the entire experience, particularly the final weeks and days, as a family we found ourselves saying to others that we could not have asked for the experience to go more peacefully and meaningfully or with more dignity.

Neal was able to be a part of this decision-making until his final hours. His wishes were respected and aided by this amazing and compassionate team. And we cannot thank them enough for the care and support we felt as a family.​​​

The wonderful care Kaitlyn got in Edmonton helped her to live well and for much longer than expected.

This is my story about our daughter, Kaitlyn.

Kaitlyn was born on April 24, 2002. Our little family was complete because we had a wonderful 3-year-old son, Liam, and now our beautiful baby girl. Everything was perfect until we received the devastating, heart-wrenching news that our baby had Spinal Muscular Atrophy (SMA) type 1 and she probably ’wouldn’t live past 9 months, and definitely not to age 2. Our world was turned upside down. We were told to take her home and love her until she passed away. And give her lots of love. That is exactly what we did. With a lot of research and help and care from Dr. Dawn Davies [of the palliative care team in Edmonton], Kaitlyn survived and had a great life for almost 9 years. She was a very loving, smart, beautiful young lady and we miss her so much. Kaitlyn was happy to welcome a baby sister named Dawn, and she was so proud to be a big sister.

-Hali and John, Kaitlyn's parents​​

My 40-year nursing career is made up of many experiences—acute care bedside nursing, community care in the home, pre-op surgical educator, transition nurse, as well as geriatric consultant. All of these have prepared me for my most rewarding and challenging role as a palliative nurse consultant.

In this role I care for the patient’s symptoms, emotions, and spiritual well-being. I also support family members who are caregivers.

One of my patients was a young mother from the Philippines. She was working to support her family to come to Canada, including her 3 teenage children so they could have a better education. Her spouse was suffering from Parkinson’s and couldn’t work. When this woman was diagnosed with a very advanced cancer and was no longer able to work, the care team and I tried tirelessly to get her back to the Philippines to be with her family and receive hospice care before she died. But we faced many challenges (there is no universal healthcare in the Philippines), and by the time the arrangements were finalized, she wasn’t well enough to fly. But this young mother was so grateful for our efforts. She died in the Palliative Care Unit, with her brother by her side.

Some people ask me if my job as a palliative nurse consultant is depressing because of all the sadness and grief. But for me, ’it’s an honour to walk with and support patients and their families through the unknowns of serious illness. It’s an honour to be with them and help them, and give my compassion, respect, and understanding as they get closer to death.

By Joy Doram​​