Peter’s wife Ann was determined to stay in her own home for her end-of-life care, but the couple were unsure how this would work and whether it would be possible.
Thanks to our Willen at Home team, Ann had the death she wanted – passing away peacefully on New Year’s Eve with Peter by her side, after celebrating one last Christmas with her family.
Ann and I were together for 54 years and celebrated our 50th wedding anniversary in August 2024. We only got as far as Woburn for one night, as that was the last time Ann was able to stay away from home before she died.
“She was adventurous, and loved travel and wildlife.”
Ann was many things. She was forthright, no nonsense, no frills, but also kind, caring and very generous. She was adventurous, and loved travel and wildlife. One of her last ‘projects’ was helping our grandson to go on a trip to Australia, knowing she wouldn’t see him again but insisting that he went.
Quality of life
Ann was diagnosed with bile duct cancer in January 2024. She had major surgery the following month and we hoped she might make a recovery, which would allow us some quality of life for a foreseeable period. Ann and I, and our sons, were in full agreement that quality of life was paramount.
But Ann struggled hugely with the side effects from both the operation and chemotherapy. Whenever she ate anything she was plagued with diarrhoea. Apart from the debilitating effect on her already weakened body, it meant she wasn’t able to do anything much away from the home.
When we were told in August that the cancer had probably recurred, our hopes for the future were dashed. Ann decided in November that she no longer wished to continue with treatment. She said she wanted to spend her last days at home – to be honest I had no idea what this meant in practice, but I wanted to respect her wishes.
One last Christmas
What Ann then did was to put all her energy into making her last Christmas the best that it could be, especially for our grandchildren. To the point where she insisted on cooking Christmas lunch herself on Christmas Day.
Once we had finished eating (Ann just pushed a few bits around her plate) she said she was going for a lie down. After that she ate nothing, had a few small drinks and was sleeping for about 20 hours a day. It was obvious to me that she was rapidly deteriorating daily.
“The last thing I wanted was to have to ring 999.”
By 29 December I was seriously concerned and rang the Cancer Centre at Milton Keynes hospital for advice. The last thing I wanted was to have to ring 999. Fortunately a MacMillan nurse was able to refer us to the Willen at Home team. They responded very quickly and were absolutely brilliant.
Immediate reassurance
The first Willen at Home nurse I spoke to was Pam and her phone manner was incredible. In a couple of minutes I knew that we were in good hands. Thanks to the Willen team, on 30 December I went from near despair to being totally reassured with what was happening and what was likely to happen.
“I went from near despair to being totally reassured.”
Two nurses visited the same day. I asked for a prognosis and they explained simply and honestly how serious it was. They made other visits to administer drugs, including morphine jabs.
All in all, the Willen at Home team were only involved for about 36 hours, but it seemed longer at the time. The most important thing was the reassurance they provided to us all with their calm professionalism and an honest explanation of what was happening. It’s hard to do justice in words to explain the positive impact they had.
Without pain and at peace
Ann died at home around 11pm on 31 December, with me by her side. Whilst it obviously was not the outcome that anyone wanted, in the end we were all glad that Ann was able to have the home death that she wanted, without pain and at peace.
“Although our interaction with the team was brief, it was powerful and hugely supportive.”
Dying at home was a dignified and peaceful end, not what my imagination had conjured up. I am so glad that Willen at Home were able to facilitate Ann’s wishes. Although our interaction with the team was brief, it was powerful and hugely supportive. I am sincerely thankful to everyone in the team for everything that they did for Ann and I in her last days, especially nurses Pam and Joy.
Preparing for end of life
In those last months Ann and I spoke about many things, including her wish to die at home. Whilst I agreed with what she wanted, I had no real idea what that would involve. This was not helped by various horror stories from family and friends.
Ann had a home visit from her GP in October, around 12 weeks before she died, and at that time the GP said it was too early to discuss end-of-life options. Even though at that visit Ann signed the ‘Do not resuscitate’ form. Looking back, it seems to me that that would have been a good time for Ann and I to start to understand what her end-of-life journey might look like. In the event, Ann ended up hurtling towards end of life with neither of us having much idea of what this really meant in practice. It just seems to me that we could have been better prepared once the time came.
“I now understand how positive and dignified dying at home can be.”
I now understand how positive and dignified dying at home can be. I was told that 86% of the Hospice’s patients are cared for in their own home; I had no idea it would be this high.
Ann’s death leaves a huge hole in all our lives, but she had the death that she and her family wanted for her, and it could not have been better.
