End-of-life care: A very personal story

Planting up my father’s grave recently, I found my mind wandering back to our last few days with him, painful in so many ways and yet hugely comforting as well. Nothing is more important to me than knowing that we spent all day every day with dad during that time, that we were with him at the very end, and that he had what I would describe as outstanding end-of-life care.

We spend so much time endeavouring to preserve life and bring quality to every moment of it, and rightly so, but given that dementia is progressive and eventually terminal, equal focus is needed on ensuring that when the end of someone’s life is drawing near, they are treated with the utmost care, compassion, love, respect and dignity, and crucially that the experience is completely personal to them.

I had never seen someone die before, and I had no real concept of how those last few days of my father’s life would unfold bar, of course, the inevitable conclusion. So many years had been spent anticipating and fearing that time, but never really thinking about how we would approach it.

When it was clear that dad’s struggles were beginning to engulf him, what we knew instantly is that we did not want his life to end in hospital. Not because the staff didn’t provide good care, they did, but with the huge pressures on a busy, acute medical ward, it was clear that dad would not have the personalised care, or the privacy, that we wanted for him.

Finding a care home prepared to meet his needs was a huge blessing, and we set about moving all of his belongings into an airy room, overlooking a garden where squirrels and cats had daily games in front of the big window. Dad would spend those last two weeks of his life in bed, unable to do anything for himself, to speak or, in the last five days, to eat or drink. What he had, however, was a lovely view, walls covered in his pictures, a bookcase full of his favourite books, his most cherished music playing continuously, a light aroma of lavender in the air and his family with him, talking to him, reading to him, and even producing an occasional ripple of laughter as my siblings and I gently teased each other in a way familiar to dad from our childhood. It was an emotionally charged time, but also in many ways a celebration of everything dad meant to us.

In those two weeks dedicated staff kept dad clean and comfortable, his pressure sores heeled with expert nursing, extra staff were drafted in to give him an hour and a half of pampering in the bath, his birthday was celebrated, and he was never left wet, dirty, scratching or in any way distressed. The compassionate staff would come and talk to dad kindly, stroke his head and hold his hands. They were also a tower of strength for us in every moment of those long days.

Caring for dad was a partnership between us and the carers, and in those last five days we kept dad’s mouth clean and moist, his skin moisturised and his room became a haven of calm tranquillity, love and reassurance. We did not want to lose him, but it was his time and he needed to know that he was loved, cherished and respected, that his work was done, his peace had come and that we would, somehow, cope without him, something that will always be easier said than done.

During that time, even though we all knew that the end was in sight, dad was as valued by everyone in that care home as much as he would have been if they’d had all the time in the world left with him. Nothing was too much trouble for the carers; dad was prioritised, never ignored, and his privacy and dignity were preserved at all times.

Our sadness at losing dad was immense, it still is, but in those hours after his passing the nurses and carers were equally affected too, and as the undertakers took dad’s body to the chapel of rest, the staff cried with us. Whatever training manuals say about not getting emotionally involved, I can honestly say that it is the emotional involvement that brings out the greatest compassion, and I am so very proud that the people caring for dad felt so much for him that they were able to do their jobs in the way that they did, and as a result felt his passing so keenly. It is a true mark of compassionate care, and a fine example that many other people in the care industry could learn from.

When someone has battled dementia for so long, the end of their life may be considered a blessing by many. The end of their pain and suffering is certainly something that the person may long for, but for their loved ones and carers, making those last few days and hours the best they can be is as important as all the care you give in the years before.  Personalisation throughout the whole of someone’s journey with dementia is vital, and however difficult it may become, at the end of that journey the frail person in that bed is still a real person, not a disease. There is no greater responsibility for those loving and caring for someone with dementia than to see that person through to the end of their journey knowing that they had a good life, and an equally good death.

Until next time...

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