Lessons from a perfect death

I know this blog is about Marco moving to Australia for two years, but more importantly it’s about change and fear of change. Something so significant has happened in my life while waiting for this next transition that I feel I have to write about it.  It altered the way I look at change and at fear of change.  My amazing Dad passed away yesterday – November 14, 2015 at 2:20 pm in a place and in a way that was so exceptional that I can’t find the words to describe it.

About 8 years ago, Dad was diagnosed with a disease called Cortical Basal Ganglionic Degeneration, a rare, progressive neurodegenerative disease involving the cerebral cortex and the basal ganglia.  When we first read up on the disease I was terrified and I know what I felt was minor in comparison to what my parents were feeling.  They had been together for 53 years, my Mom was 18 when they met.  They had a wonderful relationship and had never been apart for more than a few days. Throughout the next 7 years, they had to deal with so much change and so much fear it’s hard to imagine.  Their lives had gone from the couple who traveled, camped, fished and danced together, to the couple who were confined to home as a stream of caregivers invaded their private world twice a day to tend to Dad’s needs – rarely the same person.  Mom had to learn how to do the finances, use technology, drive again and be a caregiver herself. As Dad’s unkind disease progressed, Mom tried her best to care for him at home, but due to the combination of  health issues of her own along the way, and the progression of his illness, they came to the heartbreaking decision (together, as always) that Dad should go into care.  In January, 2015, Dad entered the Wascana Rehabilitation Centre, a level 4 care facility in Regina.  The change was so very hard on both of them.  Mom would reach out in the night to hold his hand but he wasn’t there. When she woke up, she was alone and afraid.  She shed many tears, and Dad shed a few as well.

What happened over the next 9 months was not what we expected.  As difficult as it was, Dad’s new home became a very special place for all of us, but especially for my parents.  The Wascana Rehab Centre is a facility that’s situated in a beautiful park setting.  It provides rehabilitation services for both children and adults and is a home to many of them.  The huge foyer has trees growing in it, there is a pool, a woodworking shop, a chapel, a solarium on each floor.  It has a hostel in it for those from out of town visiting, or coming to appointments where you can stay – cook meals in a communal kitchen, sit in a lovely big and comfy room – find comfort in not being alone.

The most important part of Wascana is the staff – from the nursing staff to the chaplain to the cleaning staff.  I have never experienced such a caring environment before.  My Mom got to know the staff and the residents – many had been there for years.  It took time, but she came to trust that they always had my Dad’s best interests at heart and  when she was not there, he was being cared for with love.  She visited Dad every day and they extended their care to her as well. This was never so apparent as in the last days of Dad’s life.  When we knew my Dad was nearing the end, they moved his bed into the solarium, a lovely room where he and his family could gather comfortably for his last days together.  They made sure he had no pain and that we also, were cared for.  The staff would pop in, give him a little hug, wash his face and talk to him.  He wasn’t able to answer, but that didn’t stop them.  As they had every day for nine months, they shaved him with his electric razor, combed his hair and treated him with dignity.  They also hugged Mom, checking to be sure she had what she needed, asking about her well-being. Our family watched my Dad over the next three days experience the journey toward death as it should be experienced – in peace and dignity, surrounded by love.  Dad had not opened his eyes for two days and was unable to speak, but they assured us that he could still hear.  A few moments before he passed away, Mom leaned over to give my Dad a kiss and say a final goodbye.  Dad puckered up his mouth and they kissed.  It was a moment between them that my Mom will cherish forever.   For my Mom, while she will grieve the most and has lost the most, I believe she is at peace because this difficult journey towards death (and I can’t describe, nor do I want to, the incredible harshness of this disease) ended so gently.  I too, am at peace, and I no longer fear dying.  It was, as it should be, a perfect death.

Rest in peace, Dad – you have forever changed everyone you touched for the better.