Losing someone very close to you is terribly difficult at the best of times. It is made even harder when they are very sick for some time before. So, is it really necessary for things to be made even harder by medical staff? It was not until my father in law was hospitalised some weeks ago that we did, indeed, come to learn just what that word overstretched actually meant. For my husband and his family it literally meant the over stretching of their nerves and an abundance of stress right up to the moment their father died. It made me wonder how many other people are suffering this literally as I write this. We could not fault the nurses who were caring and considerate or the doctors who were obviously stressed and probably as those wonderful words express, over stretched. But the system is what let us and my father-in-law down. Red tape, forms and an abundance of incompetence.
For us it began when ‘Bud’ (my lovely father-in-law) entered hospital. He had kidney failure and was admitted to a renal ward. We were allowed to visit whenever we liked and the first thing to perturb me was the fact that he was always in bed when he was quite capable of sitting up. The curtains were always drawn, even on the most beautiful summer’s day. Does being over stretched mean that nurses cannot pull back curtains and brighten a patient’s day with a bit of sunshine? We would find him in bed every visit and often asleep. Come to think of it I imagine I would have been inclined to sleep if my room was in darkness and I was in bed. The few times we did find him in a chair we took him outside in a wheelchair. As the weeks went on he seemed to be more and more docile when we arrived for the visits and we became concerned why this was. On one occasion we arrived to find he had been moved. Bud seemed unable to give us an explanation for this, so we inquired and were told that he had an infection and needed to be isolated. We then presumed his sleeping was due to the drugs as no one gave us any clear answers. Our fears began that if we did not get him removed from there he would develop further infections. This spurred my husband, Andrew and his brother and sister on to get him out as soon as possible. However, this was to be more difficult than it sounds. My mother-in-law had had a breakdown and felt she could not possibly continue taking on the responsibility of helping her husband with his dialysis. He was not capable of doing it himself anymore. At eighty seven, he made mistakes and often forgot to perform important tasks relevant to his dialysis. We had a big problem. So began the journey of daily dealings with the system. It all seemed so simple. We would arrange for carers to come to the house and take care of all that was needed. Then we encountered the first issue, that of cost. It was not possible to sell their house as my mother-in-law still lived there. So began the filling in of forms and more forms and of course more forms to get the financial help needed. Only to learn that we were unlikely to be eligible for financial help as my in-laws owned their own home. This felt like something of a penalization but the battle commenced. Meanwhile, Bud seemed to be slowly going downhill and mostly slept through the whole of our visit. The plan to have carers at home seemed very unlikely especially as we would need them to be experienced in giving dialysis. Then, the idea of getting him into a nursing home seemed a possibility especially as they said they would get one of their nurses trained in dialysis. Mother-in-law seemed happy with selling the house and moving somewhere smaller and the owner of the home was happy to take part payment for father-in-laws stay until such time the house was sold. Then, there were more forms and we were told that he was likely eligible for funding but we would lose it if we took him out of hospital before the decision was made.
I cannot even begin to explain how Occupational health works and social services but It seems sufficient to say that they seem to make it as difficult as humanly possible and my sister-in-law seemed at the end of her tether some days. Meanwhile, Bud had gone a little downhill and when speaking to my husband the doctors suggested in the nicest possible way, of course, that maybe dialysis should be stopped!! We were appalled. This was five weeks before he died and I hasten to add it was not of renal failure either. His family made it quite clear this was not an option. The man on his good days was sitting up in bed joking with us and they suggested pulling the plug. It is still deeply offensive to us that this was even mentioned by anyone. The battle to get him home continued. We told the hospital that we had a place for him and we were then told that occupational health and social services, at least I think it was that way round, would fast track everything. As far as I know, it got done and finally came together to be put in place on the night of the morning he died! Finally, the wait became so agonising that Andrew, normally not known to show stress, slowly began to reveal the signs. By this time, his father who had entered hospital slightly unwell was now very unwell and the thing we had dreaded finally happened. He caught a chest infection. Again the doctors said it would be best to stop dialysis and that the doctor would talk to him about it. A stranger would talk to Bud about ending his life? My husband said no! If anyone would ask his dad how he felt about that it would be him and if he should choose to continue treatment then he had every right to do so. The drive down to the hospital that day was torture. I could almost hear Andrew’s mind whirring with what he would say to his father. Luckily, he never had to. They had taken blood tests which had showed his kidneys were functioning reasonably well on their own now that he was less active. He could come home without any worry about who would do his dialysis. Except, of course, it was never going to be that simple was it? There was the bed to organise. We had to get a full time nurse. The time for a carer was now past. Bud was at a stage where he needed full time nursing. So, began the phoning around again. Then, Bud took a turn for the worst and we rushed to the hospital. They said he was close to dying. Bud rallied round and stayed with us. It was now a rapid race to get everything in place to get him home. Not back home to get well but back home to die. Hospitals it seems do not always make you better.
We hired the most wonderful nurse and I think we will all thank whoever it is you thank every day of our lives that we found her. Bud came home at last. There the story ends you think. No, sadly it doesn’t. Our lovely nurse, who we will simply call J, worked well over her hours, staying up until late because the Marie Curie nurses it seemed could not make it. Or they seemed to be coming and then did not. Most nights a member of family stayed with him as by this time he could not be left alone at night. Bud was only home five days before he died. We did not hire another nurse for night time as we were assured Marie Curie nurses would come. In total 30 different district nurses visited in the space of four days. Bud never saw the same one twice. If we had not had J, I think Bud would have been terrified by all the different faces. The stress on everyone was overwhelming. The morning he died, J was excellent as were the district nurses who came in to certify the death. I think I would have felt fine about how the district nurses handled everything if the district nurse had not come up to us and said in a rehearsed voice.
‘I’m sorry for your loss.’ Five words I heard her repeat several times before she left. I can’t help wondering if the minister for health is also sorry for our loss. It was not the nurses fault. It is how she is trained. But I could not help wondering how many times she has said that in the past month to other bereaved families. Maybe the NHS did not actually kill him but they sure as hell did very little to prevent it, so maybe they should be sorry for our loss.