by Debra Louise Barry
It is my privilege to tell you a love story. Not one between 2 people, though I could tell you about the 60 years my parents, Geraldine and Jim, were married, before my mom passed away and you would leave here with a beautiful story to remember.
My love story is between a family and a place: our family and The West Island Palliative Care Residence. Not 60 years long, but 24 days long…between June 1st and June 24th of 2013.
To situate our love story I must share what preceded it.
My mom, Geraldine Barry, spent all of April and all of May that year in hospital battling a strange and sudden loss of her voice, a cough, chills and upper body soreness we thought was pneumonia or the flu…and for two months we were in and out of emergency 3 times, in and out of rehabilitation and in and out of the hospital ward.
During those two months I spent 18 hours a day by my mom’s bedside learning by trial and error to help her eat, dress, undress, wash, walk, use the toilet and take her medication. I changed her linens and her diaper, got her up and into a chair, massaged her feet and helped her with her crossword puzzles until she became visibly depressed and gave them up. I learned to take copious notes, to question the professionals, to demand respect and kindness for my mother from doctors who were too busy, too fast, unable to spend the time to explain what was going on to us.
I became a fierce advocator for my mother who had no voice and a steady, unexplained loss of energy. I navigated a system that was broken. I almost broke, too.
My parents lived with us and I went back and forth to care for my dad, bring him to visit, and bring him back home… only to return to a new problem to solve, a change I wasn’t aware of or a doctor’s visit I missed. I became her advocator with staffs who were overworked and depleted of supplies and energy. When my mom started falling out of bed at night and breaking bones and dislocating discs, we hired a night time sitter.
Somewhere I lost myself as her daughter and became something unrecognizable. I missed my husband, my sons, my friends, the life I planned after retiring from teaching…
Our love story began on June 1st when Dr. Richer saw my mother in emergency on her 3rd visit there. She knew my mom was dying, probably bone cancer by the signs, and offered us a great gift. By mid-afternoon we were in an ambulance on the way to The West Island Palliative Care Residence.
As I followed my mom’s gurney to her room, I saw nothing of the beautiful house that day. I could only focus on my mom’s need for me to help her get adjusted there. The team that met us took over. Someone touched my arm and said
“Here, you are your mom’s daughter again, we will take over the nursing and other care. Let us show you around while your mom’s team gets her comfortable and settled”.
The love story continued every day. From our first view of her beautiful room, the handmade pink quilt that she was given and loved, the view of the gardens and the pond where family and friends congregated during visits, and we began to heal.
I saw my dad’s furrows soften. We both knew we were all going to be ok. My fondest memories are of my dad in the lazy boy in my mom’s room as they both napped every day, my mom telling me she felt like she was lying on a hotel bed with the best staff ever. My mom’s three great-grandchildren visiting, jumping up on her bed, Keely at 4 talking her ear off and the kids decorating the room with coloring they made. Then off to visit the kitchen where they knew they’d be offered ice cream or cookies. My sons and my nephews visiting often, talking and laughing with their beloved grandmother wondering what was for supper because the hallway always smelled so good!
I will always be grateful to Valerie and the kitchen staff who took care of not just my mom, but all of us, making sure we ate, offering us tea, plying us with desserts, and never being too busy to listen, chat and offer inspiration, often with liberal hugs. On Father’s Day we enjoyed a fabulous Mexican buffet in the dining room. My dad, my brother-in-law, my husband, my nephews and all the grandkids and great grandkids joined spouses to celebrate this important day.
That nurses are angels on earth is evident at West Island Palliative Care. I could ask a question or share a concern and get an explanation I understood or an investigation followed by action if need right away. Their touch brought my mom peace, their voices brought her calm. Her smile when she saw them spoke volumes. I could leave my dad with mom to do the legal paperwork or to tend to other business and come back knowing my dad was safe, his blood sugar was monitored if it was warranted, and his insulin or a snack was administered.
I learned to find myself again and to find joy in all the things the staff and volunteers prepared and offered. Afternoon tea, homemade cookies, music, the library, the fish tank, the young volunteers like Elizabeth who were so caring and so helpful.
My mom smiled a lot in those 24 days. Her pain was managed and her needs were met with care and love.
When my mom passed away on June 24th and the staff came in with her candle ceremony, we were all there. Family and friends got to spend time with her, laugh, chat, eat and celebrate her life and their relationship. My wonderful husband and sons designed and built a small pond in our backyard, a miniature version of the one in the Residence garden; a way to maintain our connection to the home we came to love. It’s where my connection to my mother is strongest now.
We realized we did not need a funeral service because we just had the most meaningful one possible in her room with her family and her caregivers. We didn’t need a funeral parlor booking, because those who would need to say goodbye had 24 wonderful days to do it at her home, The West Island Palliative Care Center.
Our family’s love affair continues and will continue. We speak of those 24 days to everyone we can. We are forever grateful to staff and volunteers and our greatest wish is for everyone to live like my mom did in her last days, in love and comfort and joy, until the end.
Thank you, West Island Palliative Care Residence. Thank you, to the best nurses in the world, the volunteers who are blessed with kindness, the staff who know and give what is needed and beyond needed in the time we are at the Residence. I will love them passionately and for always.
And so we remember and we heal. As I journey with my father in the beginning of his palliative care, this time at home, I use what I learned from the tough times in hospital and the good times in the WIPC Residence with my mother. I am not the same person struggling through each change passively nor fearfully. I am stronger, more active, knowledgeable and brave.
Only two years later, I am amazed at the community resources that are available in the West Island. My father’s journey through cancer will be different from my mother’s because I am changed and because of the services I can access at home for him.
I am overwhelmed by the services provided by the nurses at the CLSC Pierrefonds and Nova, the former VON, nurses. I have had 3 visits and the last one brought the palliative care doctor from the CLSC. So many services are in place. I am also amazed at the fabulous service by Pharmaprix on St. John’s in Pierrefonds/Dollard for the many times they called my dad’s multiple doctors to get his medication perfect for his changing needs. The pharmacists are so friendly and professional and great at explaining things to a novice caregiver. Many will read this and say “It is their job!”
But I think many of our West Island business owners and staff go out of their way to be kind and caring. From my dad’s opticians at Donnelly in Pointe Claire Plaza, his hearing aid specialists, Forget, in South West 1 Plaza, I never feel anything but satisfied. I could go on, but we often hear of dissatisfaction and frustration with businesses or services and I wanted to say how grateful I feel today for these ones in my community. Maybe you can add to this list, too.
Wouldn’t it be helpful to have a way to connect with each other as care givers in this journey to support our loved ones? Maybe we can see each other through what I believe will inevitably be an ever growing community of loved ones with cancer and care givers, no longer navigating like deer in the headlights.
I hope so.
Click here for another article about WIPCR that may interest you..