Inspirational Stories

Hospice Care

The first thing you notice when you meet Richard Steel is his larger-than-life personality, his witty and articulate intelligence and his matter of fact attitude to life. Richard, an investment banker, was in his early forties when diagnosed with an incurable condition, Idiopathic Congenital Lymphoedema. Since then Richard has faced increasing debility, frequent infections and the certainty of premature death with stoicism and courage. He realises his time of cheating death is nearing its end but self-pity is not in his repertoire. The final impression he leaves with you is not of an ill man listlessly waiting to die but of an ill man bursting with humour and life despite his disfiguring and debilitating symptoms.

My lymphoedema first became apparent back in 1991 when an infection in my leg turned into cellulitis. The infection progressed so rapidly up my leg that I was told later that I was only three or four hours from death by the time the hospital initiated treatment. It turns out that I've had the condition since birth. The lymphatic system in my legs had remained immature and therefore does not work well enough. I believe the symptoms are similar to those of Elephantiasis and one runs the risk of infection again and again. Last year I had twelve infections in as many months.

Cellulitis expands the cells that never completely return to normal. Every infection can make the situation worse by swelling the limbs further and increasing the risk of infections. My anticipated end is either an infection reaching the blood stream or the progressive congestion causing a heart attack.

Despite many bouts of infection and legs so swollen that my feet were almost a metre apart while standing to attention, I was living happily at home until a week before last Christmas. I had an infection in my foot which was getting worse and worse. The painkillers were spectacular but unfortunately I kept falling asleep and sliding from my chair to the floor. Regaining an upright position often required the strength of ambulance officers. This and the District Nurse's concern for my foot landed me in hospital on Christmas Day - the last place I wanted to be! I could see my time was up.

In hospital they tried to fix the infection and I went through all sorts of pains and horrors. I had an infection that couldn't be cured without chopping bits off me - in this case my foot. I was not overly keen on this idea because it wouldn't cure my original problem. Indeed, everyone agreed I'd just be back sooner or later with another infection with the same prognosis.

Having declined the hospital's offer of surgery, it was then incumbent on me to find somewhere else to live. That was fair enough. Without surgery there was no reason for me to occupy space in the hospital. There was no future. I have neither wife nor children - no dependants. Expert opinion gave me between two days and two weeks following the cessation of antibiotic treatment.

I knew about hospice from a friend who died there and I'd heard many recommend it. I knew my time had come, so I went into the hospice to die gracefully.

Now the story gets tricky! No surgery, no antibiotics just superb hospice nursing and I started getting better. I was getting more perky. It was a bit of a nuisance. I was being demanding. I was having fun. Two weeks went by, then a third and the management was noticing that I was no longer in need of their services. Not only was I still alive, I looked more alive every day! For one reason and another I continued to enjoy the luxury of hospice care and that wonderful environment for four and a half weeks in all. It was tremendous!

The hospice staff were great. I really felt cared for in a way not available in a hospital. They were not "fixing" me; my entire well being and comfort were important. The environment and systems necessary in a hospital are often incompatible with enjoyment. Having a giggle is never inappropriate in the hospice!

The hospice gave me control of my own life again. When you are ill you lose a lot of control and you are shunted from pillar to post but with the hospice care I found I was in charge of my own life again. I was not pressed to conform to a set of hospital rules; I could live by my rules and my values. They empowered me during my stay in hospice. They granted me respect and dignity. My bedroom felt like my own room; like a room in my own home. I was allowed to feel like the host entertaining my visitors. Bergerac and any other TV programme could be viewed uninterrupted. Furniture was positioned as I wished. In short, the hospice staff, without exception, respected my life and my space.

My infections are now clear and my foot healed - but for how long? Another three months? Another six? Nine? I don't know. I do know that I'm not apprehensive of the time when I must return to hospice. Of course, I shall expect the same room - my room!