By Cristina Preda
Let me not pray to be sheltered from dangers
but to be fearless in facing them.
Let me not beg for the stilling of my pain
but for the heart to conquer it.
Let me not look for allies in life’s battlefield
but to my own strength.
Let me not crave in anxious fear to be saved
but hope for the patience to win my freedom.
Grant that I may not be a coward,
feeling Your mercy in my success alone;
But let me find the grasp of Your hand in my failure.
rabindranath tagore – 1916
I am half sitting in an uncomfortable chair, my lower back and shoulder muscles straining painfully, turned towards a hospital bed and holding a bony, wrinkled hand. The man in the bed cannot talk and I do not know if me stroking his hand and making soothing noises helps or hinders in any way. I check his eyes for confirmation and I hope that if he does not like it I will intuitively know and try something else.
For six months I was a Dementia Companion in a busy London hospital. Scenes like the one described above were a weekly occurrence that deeply challenged my view of myself and others, throwing me into an existential crisis from which I think I emerged stronger but considerably more humble.
I never liked hospitals. The smells, the colours, the noises; but most of all the perceived fear of illness and death permeating every surface was not something I was keen to return to on a regular basis.
Last time I visited an intensive care unit I was violently sick and left on shaky legs. This wasn’t because of any specific occurrence, rather I reacted emotionally and spiritually to the energy of the place, to the fears and anxieties of the person I was visiting who was in coma at the time.
When I had to choose a befriending placement, I felt it was a synchronicity that the only hospital on the list was conveniently located in my neighbourhood. I figured with therapy, supervision and peer support I could face my fears, understand myself better and learn to protect myself against other people’s energy. I hoped all of this would help me become a better therapist.
When I went to the interview for the position, I was given a list of possible ways I could volunteer in the hospital. Chatting with people whilst giving them tea and coffee sounded harmless enough and doing the same in A&E felt downright exciting. What I knew for sure is that I did not want to work with dementia patients.
My grandmother had dementia. All her life she had been a tremendously strong woman who supported my family and consistently encouraged me to be the best I could be. I was extremely grateful for her support, counted her as one my mentors and loved her dearly. And yet, I visited her only once in her final years as the progressive mental disintegration was too painful to witness. This tall, independent woman was now shrivelled and reduced to wearing a note with her details around her neck in case my grandfather lost her again while out shopping at the market. Since her death I have been working on resolving the feelings of shame and guilt at not having been there for her.
when I started my placement in the hospital I ticked all the options on the application form barring the one reading ‘Dementia Companion’
So when I started my placement in the hospital I ticked all the options on the application form barring the one reading ‘Dementia Companion’. And yet the volunteer coordinator asked me if I would consider doing it. I declined emphatically. A week later she asked me again. I don’t know if she forgot about the first time or if she really thought I could do it. Either way, I declined again. But as in all good stories, I was challenged a third time when she asked me again the following week, and I said yes.
The half-day training for the role was done by a fantastically enthusiastic dementia lead. The material was interesting and I came home ‘google-ing’ for more information. As a person raised to value air qualities such as analytical, critical and objective thinking and a thirst for factual information, I have a deep held belief that knowledge can solve all problems (Gullan-Whur, 1987). But no amount of articles read or YouTube videos watched prepared me for the reality of a dementia ward. As I would learn in the following six months, a lot more than just air qualities were needed to overcome this challenge.
The first shift was easy enough as I was shadowing a trained volunteer and possibly she was uncomfortable being watched but we spent hardly any time talking to patients. Instead she showed me the ropes of talking to the nurses and writing the notes up.
I was afraid to look into their eyes, see their frailty and fear, because there was nothing I could do to help them.
Reality set in on my second shift. I was given a folder with the names of the patients to visit on the ward and the information recorded on previous visits by other volunteers. I walked from one bed to the next, hoping to have an awake, willing and able person to talk to. On the other hand, I was also hoping there would be no-one willing to have a chat as I was afraid to look into their eyes, see their frailty and fear, because there was nothing I could do to help them.
But of course there were people to talk to and my sense of duty was strong enough that I could not pretend they were not there. And, by the end of my shift I was full of pain, anger and fear and absolutely sure I cannot return for another day.
In the classic “Feel The Fear and Do It Anyway”, Susan Jeffers (1987) talks about “saying yes to the universe”. But what the book does not teach is how to deal with the feelings emerging once you say yes. Acceptance is a wonderful concept but unless one is without the baggage of the past and has the serenity of a saint, there is a long and perilous road attaining this acceptance. If the experience of befriending has taught me anything, it is that just as in addiction, where stopping is easy but staying stopped is difficult, in case of fear, saying yes to it is easy, dealing with the feelings emerging from it is the challenge.
I will never forget the ubiquitous smell of Ensure yoghurt present on most hospital tables and thickly coating the remaining teeth of many patients, the too long finger and toe nails, the matted hair, the broken hearing aids, the constant conundrum between confidentiality and talking loud enough to be heard.
It was distressing that in the first shifts I could not empathise with the patients or be present for them as my own pain was overwhelming. The weight in my stomach, the clutch around my heart was because I could see myself in one of those beds in the future. As a person who was raised to value the power of the mind, whose air qualities have been encouraged from a young age, the thought of losing all my memories, my knowledge and my reason was unbearable. I am not afraid as such of illness or dying and death but I want to live to the end with dignity. I felt that dementia strips away this dignity, rendering the person incapable of anything but mere existence.
I always found it difficult to ask for help but I knew intuitively that at this time, unless I share my experience with others, I will not grow and be of assistance. Sure, I could just walk the corridors of the hospital while repressing completely the water qualities of compassion, nurture and affection but what would the point be of that? So stepping into what I am afraid of requires more than the courage of that first step. It also asks me to be reflective on my practice and the willingness to change and be vulnerable.
I was angry, I cried, I was bitter and afraid. I used all the help I could get: I spoke about it in therapy, with colleagues and friends. I meditated on it. I wrote stories about it, or rather allowed myself to be the typist for an undisclosed part of me that wants to express herself in this way.
Whilst I generally believe that I have free will but there is a cosmic order beyond my understanding, I could not accept that I might not have control over my death. So I did what I guess many others are doing: decided that should the time come, I will kill myself, most likely with an overdose of antidepressants and alcohol. This decision gave me a short reprieve but a couple of days latter I watched ‘Still Alice’, a film about an accomplished lecturer who gets early dementia. Seeing Julianne Moore’s character trying to commit suicide the same way and failing in a scene worthy of a black comedy sent me back into suffering.
I went to therapy raging against the unfairness of it all and left tired, with less energy to shout and fight but with the same pain.
I went to therapy raging against the unfairness of it all and left tired, with less energy to shout and fight but with the same pain. I was still crying on the bus on my way home when suddenly I heard the music playing on my ipod. I didn’t know what it was, I just knew it was beautiful and positive, energetic and life affirming. It then turned melancholic and soft and somewhat painful before turning cheerful again with notes of what I perceived as majesty and tenderness towards the end. On a cold winter night, that piece of music encompassed what I felt, in a way that no words could do.
The music was Mendelssohn’s Violin Concerto and it came to represent the moment I made peace with my future, whatever that might be and accepted life on life’s terms whatever it might bring.
This also represented the moment when I stopped projecting myself onto the patients and learned to see them for who they were. Sure, fears of all sorts kept coming up: that I won’t know what to do or say, that I will do more harm than good, but I felt I could deal with these fears as I went along.
As time passed and I kept returning to the hospital I learned to take care of myself. Strong earth qualities of being cautious, disciplined, and ordered were of help. The chapel close to the volunteer lockers became my first stop of the day to ground myself and set the intention for the shift. This planning moment became important for me. I knew I could not cope with a ward full of dementia patients. It was too much. But knowing and accepting my limitations helped. So each time, I prayed that I would be able to talk and if possible, bring some relief to two people. That’s it, two people in six hours. Of course if the opportunity arose to speak to more, I would always do it. But I never forced myself.
I also ensured I took time between one patient and the next to write down my notes and drink some water. If I had the opportunity, I smiled and spoke to the nurses, and always tried to look out the seventh floor windows at the fantastic views over Hampstead Heath.
In “On Death and Dying”, Elisabeth Kubler Ross (1969) talks about a therapist having to deal with his own death complex sufficiently before being able to help a patient overcome the anxiety and fear of thier impending death
In “On Death and Dying”, Elisabeth Kubler Ross (1969) talks about a therapist having to deal with his own death complex sufficiently before being able to help a patient overcome the anxiety and fear of thier impending death. The operative word for me was “sufficiently”. I did not suddenly become perfect just by talking to people, reading, writing and listening to some music. I had to accept that saying yes to fear does not mean I am no longer afraid. So I know I often blocked feelings when they were on the verge of overcoming me, but I no longer felt guilty about this because I view it as an unconscious way of self-care that in time I will replace with a better coping mechanism that will allow my water qualities to develop.
Each week a new challenge was presented to me and I came not only to accept them but to welcome to the lessons learned: the lady who spoke in French and did not eat sweets as she was sweet herself and who talked about the importance of always being gracious; the cheeky lady who asked me for a muscular man and a glass of gin who reminded me of the power of laughter; the man fighting with his religion and questioning why god has given him this pain and who reminded me so much of my own anguish; the woman who had lost the power of speech but had numerous lotions and her night stand and would slowly bring her skinny hand from under the duvet for a massage, showing me the healing effect of touch with a more relaxed grip after a few minutes; the fairy-like, small woman who walked around constantly and spoke with a child-like voice, about dark woods and deep waters from which the dead return and who I wish I had known better so I could understand where these images came from; the countless formerly strong, intelligent and independent men and women who were learning to cope with as much dignity as possible with this new stage in their lives.
Only now in retrospect, writing this article do I realise the immense beauty of human nature that shone through this awfully cold environment. This experience has enabled me, above all, to value the power of sharing and receiving support, to show others my vulnerability and to slowly make forays into being open to the raw pain, anger, despair and loneliness of others while being able to appreciate these people in their wholeness.
Gullan-Whur, M. (1987) The four elements. The traditional idea of humours and why they are still relevant. London: Rider&Co.
Jeffers, S. (1987) Feel The Fear And Do It Anyway: How to Turn Your Fear and Indecision into Confidence and Action. San Diego : Harcourt Brace Jovanovich
Kubler-Rosss, E. (1969) On death and dying. New York : The Macmillan Company