MY DAD DONAL Bell and most of his family have a rare lung disease and his first sibling to die was 19 years ago at age 57.
Dad was one of 10 siblings and the sixth to pass away. His baby sister passed away in July 2018, just two months after Dad.
The day after Dad’s 50th birthday, 27 years ago, he underwent major surgery. Dad had cancer but he was a fighter, very strong and survived cancer against all the odds. Dad had a tremendous faith and was a very quietly spiritual person.
He didn’t allow anything to affect his life and although his surgery meant that his life would never be the same again, he took it all in his stride and got on with life. Years later he suffered two heart attacks but again his attitude was that he would have the surgery, take the medication and get on with life.
‘There was no cure’
Three years ago, when he was diagnosed with Idiopathic Pulmonary Fibrosis he knew that he couldn’t beat this one because there was no cure and no surgery would help him.
But again, he just got on with life and followed his doctor’s orders and adjusted his lifestyle accordingly. Because Dad had seen first-hand how his brothers and sisters had passed away, he knew not so much what he wanted but he definitely knew what he didn’t want.
He didn’t want to die waiting on a machine for new lungs. He didn’t want to die in a hospital gasping for his next breath and he didn’t want to die alone.
Palliative care was the answer. The hospice gave us all the help we needed to have Dad at home albeit totally dependent on pretty high-tech oxygen generators and lots of medication including many different controlled drugs.
‘We were expecting the worst – but he had other plans’
Dad became very ill in November 2017 and was admitted to hospital. He spent two weeks in the hospital in Galway and then a two further weeks in Galway Hospice.
When he came home, we were told it might be a matter of days (maybe four or five). He was still very unwell but he was so happy to be at home again in his own room with our wonderful mother beside him. It was almost Christmas and we were expecting the worst at every moment, but Dad had other plans.
Dad basically “re-wired” the house so he could go from room to room with the oxygen Airvo machine. He organised it so that the noisy oxygen generators would not be in their bedroom so that Mam could get a good night’s sleep. He thought of everything and about the comfort of others.
He never gave up and no machine would tell him he had to stay in bed all day.
One day Dad said that he would like us all to go to Cloonacauneen Castle near our home for Mam and Dad’s wedding anniversary. That was three months after he came home from the hospice to die. Not my Dad! We had two advance teams with all of the machinery and then Dad and Mam followed. The palliative care team couldn’t believe it.
We talked that morning about how that day could be his last because of just how daft what he wanted to do really was. But it was game on and we just went for it.
I didn’t sleep the night before our crazy escapade going through all the logistics of how we could manage it. My eldest daughter, who is a doctor, did all of the maths and calculations as to how we could “feed” the Airvo machine with enough oxygen to last for a few hours outside the house and away from the generators. Dad had great faith and trust in his team.
He needed a lot of medication and he was exhausted when we got home but it was so worth it.
‘He was ready’
Dad promised my daughter Aisling that he would try to live long enough to see her graduate as a doctor.
In January 2018, he told Aisling that he might not make it to her graduation but he would do his very best. Aisling sat her exams and after the exams told Dad that she was now a doctor so he had fulfilled his end of their bargain and he could let go if he was ready.
But not Dad. He needed written confirmation. In May, Aisling got her exam results and passed with flying colours. Dad could not have been happier. He held the transcript of her results all evening.
The following day at 12 o’clock Dad passed away in Aisling’s arms and holding hands with my other daughter Aoife and my mother.
It was a day like any other and all he felt was a little bit dizzy and closed his eyes. There was no pain, no distress, no anxiety at all and no fear. Dad just slipped away peacefully surrounded by love.
We had promised Dad that we would never, ever allow him to die alone or afraid or in pain. The hospice allowed us to keep that promise. The palliative care nurses who called to see Dad every day were a wonderful support not only for Dad but for all of our family. The hospice chaplain called often and she and Dad had quiet moments of prayer and chat.
While Dad attended the hospice day care every week with Mam, he participated in a project which involved writing about his life and his family.
Dad being Dad, it soon became a book. Dad’s book is something we will all have and treasure.
Dad was an amazing person. He never moaned about anything. He lived with his disease for over three years taking each new restriction on his life and his mobility in his stride.
First, he had portable oxygen and he could travel with it. He visited his family in Dundalk and Dublin. He went to parties with his machinery and enjoyed life to the full. He watched Ireland win the Grand Slam and shouted out with pure joy when we won. No doctor would have thought he had lung problems that day!
It all just became part of his day. But little by little he needed more and more oxygen and in the last few months of his life he would have been hospitalised had it not been for the support we all got from the hospice.
If someone telephoned to ask how he was doing he would always answer cheerfully: “I’m the finest now. Just getting ready to go line dancing”
Donal Bell, from Galway, spoke about his palliative care experience in a video which is being made available during Palliative Care Week – 9 to 15 September 2018. The video can be viewed during the week at www.thepalliativehub.com
To embed this post, copy the code below on your site
have your say