welcome to my world
A taste of my voluntary work in hospice care, with the Visiting Nurse Service New York (VNS). From my blog.
Since returning to the UK in summer 2019 I have not found a way into hospice work locally, but who knows if it might return as a opening in the future? Never say never.
I attended my first “vigil” this week. When a hospice patient is expected to die within 24-48 hours, trained volunteers go to sit with them to offer a “soothing presence”, in shifts, whether in a residential setting where the nurses are over-occupied, or at home when there are no carers, or the carers are in need of support in this most precious stage of life. My lady was in great distress in her care home bed, with severe dementia and unable to communicate coherently. For my whole time - nearly 2 hours - she shouted unintelligible words and held tightly, frantically, to my hand. Her whole body was at times in agitation, as if she had to try to tell me something with her whole being. The nurses were not interested: a shrug of the shoulders and the comment “she’ll go to sleep soon” was the only response I got when I asked if it was “normal” for her to be so agitated.
It was a most unhappy and distressing experience. This precious, desperate lady did not appear to find my presence soothing, whether I sang or spoke quietly, or sat silently, whether I looked at her or looked away in order to read to her; whether I stroked her forehead or just let her hold my hand or arm. Her notes told me she was catholic, and she had an Italian name, so I tried reading psalms and prayers in both Italian and English. Poor poor lady. I heard she was still hanging on to life a couple of days later.
Why did I do this?
Somehow, and surprisingly, my path has taken me into hospice care here in New York. I became a hospice volunteer in the spring and have been visiting two women in their homes regularly ever since. “Hospice” is a concept here, rather than a place; many people who have a life expectancy of under 6 months are being cared for at home and not in residential care; all are offered medical, psychological and spiritual care by professionals as well as a friendly volunteer to support the patient and the carers each week. My 2 ladies needed my help for particular reasons: Mimi’s family requested a German speaker in order to stimulate her in her mother tongue. Rita, an ex-professional musician of 100 years old, gets the pleasure of my live singing, and flute, oboe, and piano playing in her apartment each week! It is a simple service, as a volunteer, but one that has a much greater value, intrinsic to its nature, than most other single hours of my day. To me and to my clients, both.
Further to this, I have found a group of wonderful women, the Threshold Choir, whose vision is to sing in small groups of 3-4 women, in 2-3 part harmony, at the bedside of terminally ill and dying patients. “They’re your tribe, Mum”, is how my daughter described these warm, gentle, generous women, when I told her how at home I feel among them, and how the feeling of belonging gives me such pleasure and consolation in an otherwise often challenging environment. It usually takes new members about a year to train sufficiently musically to actually join the bedside groups; I have been singing for 5 months and am about to join my first bedside ‘sing’. (Yes, okay, am just a little bit proud of this. All my musical investment over all the years gives me some advantage!)
Supporting elderly people in need of comfort seems to fit with who I am and what I can be right now. My friends are at times taken aback at my role: they find it too scary or heavy or sad a task to consider. I find it none of these: for me it offers a simple and deep satisfaction to be able bring comfort and joy into people’s lives - patient and family and carers – and when it includes this amazing singing, which is a moving and beautiful thing, it is like offering a warm love-bath. I cannot find any better way to describe it than with such a sentimental phrase. In general we are really bad at paying attention to this part of human life! Even those of us who have reason, as people of faith, to have hope for what might face us after we die. Our western culture prefers to put people away - out of sight, out of mind - than to face and be with, be challenged by, the unknown, mysterious end of our living days which is called death. I think this is going to give me a perspective on my life that is only enriching, and I hope that my presence with anyone who is nearing their life’s end will bring a special quality that offers hope to them and to their loved ones.