Finding life again…my experience of Hospice care – Rosie Adamson-Clark MSc,M.Ed,M.A.

Categories: Care and Opinion.

My life was I thought pretty darn perfect. Though I had to retire early, due to ill health, from my NHS clinician role in a psychology/mental health team, I had managed to create a very full and enjoyable life.

Leaving the role I loved was hard. A huge sense of loss to me. I  eventually adjusted and filled my diary with roles that continued to help others, but which drew less of my physically very limited reserves.

From being a child I have been passionate about equality issues and helping others in need of whatever skills or knowledge I could offer. My body might have limited ability, but my brain and my passion to assist others could fill a room.

Always having had the challenges of breathing problems, from Chronic brittle asthma, lung fibrosis, heart murmur, life threatening allergies, Ehlers Danlos, Addisons disease, Rheumatoid arthritis, [to name but a few of the interesting conditions or syndromes for want of a better word I carried ] I had to be creative in adjusting to a life with limits.

I was a patient at several large hospitals in the Northwest to try and manage my conditions, and various consultants found my health and genetics ‘fascinating’ so they liked to use me as a teaching tool!

Every winter I would fall victim to pleurisy, pneumonia, repeated chest infections. These became increasingly hard for the medics to deal with and alleviate. I have had unstable angina for many years, but none of these things I felt were a  huge problem, just parts of my uniqueness to manage as best I could. From about 2015 I began to be extremely breathless, without wheeze or infection, to the point of nearly passing out.

Something had changed dramatically and was impacting upon my ability to do what I wanted to do. Several times, when out with friends, I did pass out.

A couple of hospital medics and my own GP were not overly worried and put it down to my usual, long-term damaged lungs, or as one Doctor said…maybe it’s weight, you have put weight on!

As the struggles to breathe became more pronounced I knew something was amiss. Salford Royal lung fibrosis clinic, started to do more tests on me and took my case to the Northwest chronic cases seminar to try and ‘Sherlock ‘an answer to the puzzle called Rosie!

In September 2018 my wife and I holidayed to our beloved Italy; we intended to go a few times a year as she retired that month, we had big plans.  However, my serious struggles to breathe ,even in the temperate climes of Italy, were so bad I knew I would probably have to re think our future travel ideas.

That October , I had pseudomonas and was admitted, very ill, to Hospital for 3 weeks. My ability to fight off any infection was seriously absent. Whilst in hospital, I had a couple of events when my heart rate rapidly pushed  to 190/200 at rest in bed. It puzzled the chest team. I felt dreadful, everything was a struggle.  6 weeks later,  on Christmas Eve, we decided to walk to the restaurant on the corner, a 5 minute walk,  even with my being an elbow crutches user. It took me 30 minutes that night. We didn’t stay long enough to watch the band, I needed to be home. Luckily we got a lift home, I couldn’t have walked. Someone said my lips were blue and I looked grey.

Christmas day I spent in bed, feeling very sick all day and had  burning indigestion. I had been sucking XXXX mints for the past 4 weeks with burning reflux , or whatever it was. I felt as if I had a lorry on my chest and my left arm was very sore. I slept fitfully that day . My partner came to bed at 11pm. at 1am. I woke, startled by a feeling of impending doom and a desire to vomit immediately. I got up, was sick, and as I often did, I shook my partner and said  “Chrissie I am going to have a bath I don’t feel well.” She muttered ‘okay ‘and went back to sleep.

I didn’t bathe. I went downstairs and rang an ambulance at 2am and told the operator I was having a heart attack. The ambulance took 8 hours to get to me. The paramedic said ‘you are having a heart attack, happy Boxing Day morning!’ I was taken to the local hospital and sat another 4 hours in A&E. Eventually a cardiologist came to me after a scan had been organised. He didnt look me in the eye, he said …’ It’s too late for Thrombolysis drugs, sorry’ . I was admitted to CCU, a very sick woman, with late presenting STEMI and a Left ventricle which was so damaged nothing could be done. After many tests, angiogram etc, my Ejection Fraction was found to be 30% even with the 8 new drugs I had been prescribed.

This back story is important to help understand my downward spiral . After 4 weeks in CCU, then a further 2 weeks on a surgery ward  (as I had a haemorrhage from Diverticulitis and my kidney and liver function were also cause for concern with poor function) I was very traumatised and felt I was waiting to die at any minute.

By March 2019 I was in a deep  reactive depression and felt physically unable to do anything. I felt my life was over anyway, so I just wanted to be alone to sit in my comfy chair watching the birds. My GP, having known me for many years,  as the woman who everyone called Tigger was very concerned. …  I had always  been busy,  bounced back from everything thrown at me,  but my bounce back had gone.

The GP referred me to the local Hospice for some help with my situation,  live a little she hoped, whilst I could. The cardiac surgeon at the Northwest cardiac centre had told me I would have about 4 years to live. My GP said she wasn’t going to see me sit in a chair for 4 years.

I was sceptical, what could a Hospice offer me? I didn’t have cancer and wasn’t going to die in the next few months, so why would I go there. I was Mrs Angry and weepy, but to please those around me, I went for the assessment. I remember telling the Consultant, a nice young fella, that I wasn’t really ill enough to use the service and anyway couldn’t see what they could do for someone like me. He suggested I try the day patient facility and give it a chance and they might be able to help me, find a way of being, with my life limiting conditions. The day unit was cheerful, homey, comfortable and welcoming.

I felt suddenly at ease in that building, as if  a great weight had lifted, and the place had arms that  wrapped around me, protectively, encouragingly, lovingly. I began to relax. The team of Nursing staff, Doctors, creative therapist and psychologist, all wove a safety net for me, and enticed me back to life.

I suddenly  wanted to use my skills again, to be the giver of care and not the receiver. The intuitive CEO Leigh Vallance was always a presence around the place, not some body in an office, she was involved. We chatted as she knew my what my previous NHS role had been and that I was a Hospital Governor still and Human rights activist.

I said I still wanted to help make changes for Inclusion, so she allowed, NO ,encouraged me to offer 6 sessions on LGBT awareness for the Hospice staff. I thoroughly enjoyed doing that, hard though it was, and I gained as much from it as the staff did. I felt life was coming back to me. I was however, admitted as an inpatient twice, extremely ill, having what was assumed to be another mild MI, and on the 2nd occasion a collapse with liver function issues. The care and compassion given to me for every second I was in the Hospice, day unit and inpatient and as a trainer, was beyond any pay scale or expectation of each role or person involved with me.

The Hospice does not, as the general public assume, just tend to the dying and their families, it encourages the living, those with life limiting conditions, those with an uncertain future, it helps people who are damaged and hurting to return to life, to feel the joy in a day, or event.

The people who work in the Hospice organisation, do so as if it’s a calling, a passion which drives each and every one of them to offer all of their time, skills and energy, long after Hospital staff would have given up, or gone home. They are a unique set of people, who deserve recognition, but who often wish to remain in the background serving the needs of the patients…the hurting and lost.

I found life again because of that care, their love, and their genuine wish for me to bounce back …at whatever level I could manage. I am still being supported by them in an amazing way, 3 years later. I cant thank them enough. I fund raise for the Hospice when I can and wrote a poem which is now the Hospice poem!

I must give a huge shout out and recognition to Dr Jenny Klimiuk the Consultant , who has been an amazing,  a truly caring clinician, trying to make life less pain filled, looking for solutions or ways to help me be the best I could be.

Mary the Art therapist renewed a schoolgirl love of art in me; the alternative therapists Lisa and Varsha soothed me with massage, when the morphine would only make ‘woolly’. Each and every staff member, from the cook, who produces tempting food, to the hairdresser [now retired]  and many, many volunteers, have each played a role in getting me out of my chair and back to being engaged.

Because of the Hospice family/team, I have been able to write, produce, direct more films about equality, show them in film festivals with support, and give zoom talks about my creative work. I am mostly a wheelchair user now and oxygen user most of the time.

End stage heart failure makes life hard to get through; many days I don’t want to go on, I struggle constantly  to breathe, exhausted and in pain… but the Hospice team cheer me on and wont give up. They, my darling wife and our Quaker Meeting house/Friends , keep me going, keep me useful!  I am about to be admitted to the Hospice again to try and stabilise the increasingly severe pain, which is beyond description. They will look at other medication to help. This is necessary with life threatening allergies and lack of hospital support, or family helpers, as Chris and I are from Yorkshire so have no family here… the Hospice team have become a family to us. Supporting my wife as well as myself.

I cannot emphasise enough that Bolton Hospice has truly given me my life back, a different life, and for how long we don’t know, but a life worth living… on the days I feel not in control, the days I am falling to bits, the team are just on the end of the phone.

Covid was incredibly difficult. Hospice staff visited the house, rang weekly, made sure I, we, weren’t forgotten in this challenging, changing world.

All life is valuable until the last breath is drawn, the Hospice community and its ethos, worldwide, show this in rainbow colours. My heartfelt thanks to all of Bolton staff and all the Hospices and their staff throughout the World…You help people live, not just die.

Rosie Adamson-Clark


About Roșie:

 I worked in Clinical psychology and as a lecturer and Court appointed therapist. I advised Govt and helped create the EDF document about Equality and Diversity practice and law. I advised the DRC many years ago as part of the disabled users group.

My private psychology work gained several Judges commendations for helping offenders turn their lives around. In 2015 I won an award from Sir Ian McKellen for my life time of equality campaigning, and work for minority groups. This work was focussed on LGBT issues in Healthcare settings.

My wife Chris and I were the first ever Quakers to be married in a religious setting, our Quaker Meeting Hall.  When the equal marriage act allowed such happenings Quakers were the first to embrace this, having campaigned and advised Government for 50 years on the importance of relationships of every kind being recognised and valued.

In 2018 I was commissioned to write a play about LGBT equality and highlight Local/Bolton input. This was shown at many film festivals in 2018 and 2019. I am well published in poetry journals, and previously in social work Journals and Psychology and Counselling journals. I was a hospital Governor. My wife and I support Refugees and Asylum seekers as all Quakers do. A Syrian woman and her sons, have become part of our family of 2, now 6!

Being busy keeps me alive and alert, I feel the Hospice are a central part of my living and living as well as I can! If you are interested in my work, films, go to Youtube and type in my name, there are 7 films to watch about equality. I am due to give a talk via Zoom, about equality issues and my film work. I have one of my films streamed to the London LGBT film festival on 23rd February.

Leave a Reply

Your email address will not be published. Required fields are marked *