Dave didn’t want to go into a hospice and we assumed he would be able to die at home. But I don’t think most of us really knew what that meant, how it would go and how he would die.
Dave was told he probably had six maybe nine months to live and the only treatment they could give him was palliative. The GP would produce prescriptions we hadn’t asked for. They would be sent to the wrong chemist. In theory, caring for him at home, we shouldn’t have had to worry about the drugs that he was on, but actually we worried a lot.
None of us are professional carers and nobody really told us how to do certain things. It was just so stressful and so tiring. I was driving to work one day and nearly killed myself on the motorway. I decided I needed to be focused on Dave and so I took carer’s leave, and then sick leave, to help take care of him.
Nursing someone at the end of their life is a privilege. To be able to make that as comfortable as possible for someone is the most important thing you can do. I think the experience of looking after Dave changed me, and I miss him.
Towards the end, Dave had carers coming in four times a day, with the GP visiting every week. The support from the district nurses was good, too, though it was sometimes difficult to get hold of them out of hours. At night we had 'hospice at home' care once or twice a week, plus Marie Curie nurses two to three times a week.
Dave’s professional carers were amazing, but I know that the important job they do would be better and easier if they had better training and education. Meeting the physical and medical needs of someone who is dying is so important. Understanding the changes happening - sometimes every few hours - and responding appropriately is a real skill.
Having someone to help you get the care your loved one needs can make such a huge difference for families and carers. That’s why I got involved with Macmillan’s end of life campaign.
Family and friends want to focus on their loved one’s emotional support and just spend time with them in the last weeks and days. Having a care co-ordinator and well trained staff, as well as focused community nursing provision, goes a long way towards making that a reality.
I am pleased that the government has listened to the voices of those who have experienced just how hard it can be. And I’m delighted that they want to do something about it.
We lost Dave - our lovely brother, partner, dad, son and uncle - just over two years ago. I know he would be proud that his death has contributed in some small way to making changes to how we look after people at the end of their life.