The Future Matters

After university, I moved to London in 1972 from New York City to study cello with Jacqueline du Pre’s teacher William Pleeth.  I am still here 45 years later (and still play the cello, but just for fun).  I have a husband, three daughters (and their partners) and four grandchildren, with a fifth coming in 2018. 

I worked in fine art publishing for 21 years and then for another 21 years have been working in the voluntary sector, as executive director and now as trustee, chair and volunteer.

My interest in end of life care began when I had to look after my mother, who moved to London in the late 70s.  I was her ‘care manager’ in what became an all-consuming role of total immersion to make it possible for her to stay at home, where she eventually died in December 2012, aged 94, with my sister and I by her bedside. 

The build-up of support around her was phenomenal (GP, district nurses, lymphoedema nurse, podiatrist, dentist, physio, occupational therapist, palliative care nurse, social services, care coordinator, the service provider). I arranged for the delivery and eventual removal of all the equipment she was given, and I set up meals on wheels and the link line. I was on call 24 hours a day.  But when she died, everything disappeared almost within minutes.  Apart from suddenly feeling totally alone, I felt I had accumulated a lot of knowledge and interest in end of life care, and wanted to find a way of sharing or using this to benefit others.  Volunteering was the best way to do this.

I did some work with the Carers Hub, and trained to provide listening support for Carers UK four years ago and do this every week. I joined a last years of life group where I learned about Future Matters, which supports people planníng for the last years of life through writing their Advance Care Plans. So I trained with Gentle Dusk, who run Future Matters, to deliver workshops, presentations and work one to one with clients, which I have now been doing for two and a half years, every other week. The mix of volunteering in these two areas works well, as they are often interrelated.

It was surprisingly welcoming to switch from being ‘in charge,’ as I had been in my paid work, to being a volunteer.  The training and support I have had both at Carers UK and Future Matters has been amazing.  The sense of doing something that helps others is wonderful, and even though at times the people I listen to and meet with are challenging, I am learning all the time and am more and more aware of what wonderful people there are who live in incredibly difficult situations.

It is hard to define what my best experience in volunteering has been.  I think what I enjoy most is making what I do fun, which perhaps sounds absurd. If after listening to someone on the phone for 45 minutes, I can hear a change in their voice and maybe even a laugh, that is incredible.  If after working with someone on their Advance Care Plan for several hour-long sessions we can celebrate and jump up and down because that person has completed something for the first time in their life, that is also incredible. Or if I can gently convince someone who is sceptical that it is worth considering what sort of end of life care they would like, and they write it down and know their GP and family will respect their wishes, that is a joy