My father passed away in August. The last few months of his life area blur to me. He had been in and out of hospital for the last couple of years. He was fiecely independant and would not go to any kind of supported accommodation. I tried to encourage him to do that. He would agree with me and say it was a great idea and then make unending excuses why he could not do it right now.

He became sick again on the 16th of February. He was generally unwell and was admitted to hospital with boarderline pneumonia. While there he had a stroke and suffered seizures because of the stroke. He was in intensive care for quite some time. When he had the seizures sometimes I thought he was dying then. We started to get used to the idea that he wasn't likely to go home. My sister came out from England to say goodbye. Then he recovered! It was almost a complete recovery. He got back his ability to speak, walk and make jokes. He was almost back to his old self again. Can you believe it? He did this to a varying extent several times. Each time we thought we were saying goodbye and each time he recovered to not quite as good as he was before.

Eventually he was discharged to a rehabilitation hospital. I thought it would be great. It was shocking. Firstly he had suffered kidney failure while in hospital and required dialysis 3 times a week. I was informed that I had to do this. It took about 2 1/4 hours each way. I work part time and the times I would have to drive him, were the exact times I had to take my children to and from school. Now of course if it was neccessary I would have to make arrangements for my other committment but I was amazed that there wasn't another way. I did it at first and then approached the head of the dialysis unit and asked if there was any other way. The dialysis unit used a taxi service which they assured me was very good. Dad said it wasn't. As well as being quite vulnerable and the driver often charging too much the actual cost (even with a disabled subsidy) was quite steep.

I made enquiries of community transport groups. They all told me that they would take people to general medical appointments or even to the hairdresser but their funding specifically excluded dialysis. Everywhere I asked the answer was "Oh, that is up to the family". Because he was in a private hospital he could not get an ambulance. I tried to change him to a public hospital but the waiting lists were too long and they would not take someone from a private hospital.

The the hospital tied him to a chair. He never walked again after that. They eventually stopped doing it but only after a lot of complaints.

Then the next step was to get him assessed to see what support he needed when he left hospital. I was keen to get this done so that I could work out the next step. What they didn't tell me was that once the assessment was done he had 30 days to leave the hospital or he would be personally liable for the cost of his hospital stay ie no insurance. They issued this to me in a letter, not even a verbal advice. Dad assessed as needing nursing home. He hated they idea. I tried to convince him (and myself) it was temporary.

What I also did not know was that there were no nursing home beds available. I applied to scores of nursing homes. Some virtually laughed in my face when I asked. My standards got lower but there were still no beds available.

I finally found a temporary bed in a quite nice nursing home. What I failed to take into account was that at the end of the temporary stay, my father would have to leave and he would have no right to re-enter the hospital, with or without insurance payments. He didn't like the nursing home anyway which scared me because it was far and away one of the bast I had visited. If he was ever offered a bed it probably would not be in a facility as nice as that one. All the time he was travelling to and from dialysis by expensive and incompetant driver.

Then we faced the possibility of Dad having nowhere to go. He needed heavy nursing care which I could not do at home. There were no beds. I called everyone I could think of with my dilemas. I even tried the media but nothing worked. I was very stressed and working on these problems virtually full time. Eventually, by luck, someone mentioned to me that a bed was about to becaome available in a home. Dad moved in there. It was okay. Good staff not very attractive but okay. I thought I could relax a little and give alittle time to my children and my husband. Dad died a week later.

I feel that he was abused, not by anyone in particular, but by the system. I feel I should do something to stop these things happening to someone else but I couldn't get any help at the time, what difference will I now. I feel really ripped off myself too that the last few months of my fathers life were so stressful and so filled with uneccessary worries. I feel I need to do something but I don't know what.