On a Wednesday my husband Colm walked out our front door, his legs buckled and instantly he lost the ability to walk. Despite 10 days of very intensive radiotherapy, tumours in his spine that caused nerve damage did not respond to treatment. He had sensation in his legs but was left paralysed and immobile.
After two weeks in hospital he had “a black, black day”. Reality hit and he touched despair. The treatment failed; his legs didn’t work; he needed help to turn or pull himself up in bed; it took two people and a hoist to get him sitting into a chair. Our planned holiday would have to be cancelled and he would die with one regret: missing our daughter’s wedding the following year.
He told visitors the only gift he wanted was a smile
Colm decided that he had two choices. He could stay in that dark place and make life hell for himself and miserable for me and our girls, or he could work within his limitations and make a quality of life for himself, and he did, admirably.
We put a large “No Worry Zone” notice on his door. He told visitors the only gift he wanted was a smile. He made the courageous decision to tell our daughters that he was terminally ill. He asked the nurses to give him one hour of privacy on a Saturday; he needed that time for a family meeting to break the bad news.
Then he told his consultant that he wanted our daughters to be kept fully informed of his condition. The medical team had full permission to answer any of their questions, even ones he was not ready to ask.
Indomitable spirit
Colm had an indomitable spirit. In the early weeks he had the energy to participate in meetings. He was constantly on the phone, organising events for Toastmasters and the All-Ireland Ballroom Dancing Championships in Carlow, which he was determined to attend.
Two weeks before he went to the hospice we took him out in a wheelchair taxi for a full Irish breakfast.
The oncology team who cared for him for the 10 weeks he was in hospital were hugely supportive of his desire to have a quality of life. They were also realistic and told him honestly that if he went from Dublin to Carlow he would not come back alive.
Two weeks before he went to the hospice we took him out in a wheelchair taxi for a full Irish breakfast.
It was a five-minute journey but, too weak to eat, he managed to drink half a latte and had to be rushed back to hospital exhausted. He wanted to be transported to the hospice by taxi, but was so ill he needed an ambulance.
He was delighted with the lovely, spacious room, the garden view and pain management in the hospice. The transition from hospital care was unexpectedly difficult.
He found the 16-hour time lag between supper at 4.30pm and breakfast at 8.30am the following morning far too long. He told the nurses and asked for details of meal times, services, etc. The hospice leaflet did not give that information. His requests for a television remote control and a stand to hang the urine bag outside his bed were not heard.
Individually, one of my daughters and I contacted nurses on the hospice team. Knowing Colm’s personality, he would ask to travel to Carlow but we felt he was too ill to go. They told us the information would be passed on to the team.
With the benefit of hindsight, I’m aware of how easily miscommunication can occur if a person offers information, makes assumptions and fails to check for understanding. When the hospice team set up a meeting with the family, I assumed that the discussion would centre on what Colm needed. But that was my agenda, not the team’s.
Too ill to compose a letter but not to decide on the content, he asked me to write to the team
Palliative care
The following day Colm asked me to speak for him. Too ill to compose a letter but not to decide on the content, he asked me to write to the team, explain what would improve his quality of life, and cite his original requests that were ignored and made him feel uncomfortable and neglected.
He also wanted me to express his appreciation for the palliative care that made him pain-free, and especially the motorised wheelchair.
Poor communication has a huge impact on the families of a loved one who is dying. Good communication is more complex than many of us realise.
One reason why people who take part in the same conversation or attend the same meeting will give opposing accounts is they focus on different, though equally accurate sets of information.
The importance of feeling listened to and heard cannot be overestimated. Good communication makes a huge difference to families in those last precious days.
Speaking about end-of-life care, Ombudsman Peter Tyndall has said: "If there is one message to be learned from complaints brought to us, it is that small things make a big difference."
Carmel Wynne is a life coach, cross-professional supervisor and author. For more information, see carmelwynne.org.
