In the early 90's, after being made redundant and then going through the desperate and frustrating search for work, I realised that the only jobs that seemed available were in the care industry. So I ended up applying for a large number of jobs in nursing and residential care homes. Needless to say I applied for a large number as I continued to get refusals. But this gave me the opportunity to see the inside of a substantial number and variety of such places. That, and the search for a nursing home for my wife, meant I was paying a lot of attention to what they were really like and what they would be like to live or work in. My overall impression was that a disturbing number were mediocre to poor, some downright unpleasant, especially from the residents point of view.
Those perceptions are always, for me, going to be the background against which I judge any future encounter with such places. So, as my mother aged and her health became more of a concern, she kept on having little incidents that showed her underlying health was declining, I wondered what was ahead for her in terms of what her care needs might entail. She quite naturally had a robustly simple view of her future, to live at home until she became so seriously ill that she had to go into hospital. The hospital period she saw as a few days of nursing before inevitable death.That was what she wanted, that is what she expected, but it was not what she got. The gradual decline in health and ability is an inevitable consequence of the ageing process. There are a great variety of ways this decline affects people for a substantial number of well known reasons, so the consequences on support needs should be well understood and suitably catered for. Sadly this is often not the case and the story of my mother's last years illustrates this.
As I mentioned in an earlier post she had suffered a substantial number of serious health issues through the years, many cancer related. In the late 80's she had a cancer of the lymphatic system which she was not expected to survive. But she did after a massive dose of chemotherapy. After that her general health was substantially compromised. But she drove on in her own inimitable way determined to not let it get in the way of what she wanted to do or the way she wanted to live. She even managed to keep a largish unmodernised house going on her own after my father died in 2000. But in 2003 she realised this was not doing her any favours and she sold it, with great reluctance, and moved in to a retirement flat, she was 83 at the time. But time and the damage to her general health from all those years of serious illnesses were catching up with her, so the frequency of small illness "incidents" increased. These sometimes involved a brief visit to the local A&E department and, after one particularly frightening one, leaving her with some limitations, I persuaded mum to have someone come in as a part time carer. Basically what she needed was someone to help her wash and dress in the morning as the movement of her arms had become severely limited.
This was where my concerns over her substantially increased as not only did she only very reluctantly agree to this provision but the hospital should never have discharged her without first checking she was being discharged into a safe environment. This was a rule Social Services and the NHS had agreed national between themselves and had, I was told, been set up and was operating where my mother lived. Just on this occasion they did not comply with their own requirements. They even managed to discharge her with the wrong medication. When I complained, they apologised, said they would learn lessons, and it would not happen again. How often have we heard that same litany and how often have they seemingly not learnt lessons only to repeat the cause and effect over and over again?
As a consequence of my complaint mum was visited by social services, assessed and it was agreed people would go in to her to carry out those tasks. This was for a free trail period of a month after which the service would have to be paid for by her. Mum found that month to be much more of a trial than we expected. They were due in to her between 7 and 9 in the morning but their arrival time was very erratic sometimes not turning up till much later, sometimes not at all. There was also no attempt to warn her of late or non attendance. So at the end of that trial period, when asked if we wanted to continue, we replied with a resounding no. The other aspect of that care was that the people visiting could be any one of about 2 dozen staff, which is not want the care receiver wants when care as intimate as being helped to wash and dress is involved. Instead we went to a local independent care agency who were able to provide specific care assistants to ensure the same person would always turn up at the same time to give that necessary level of confidence and care.
But what was missing from all of this was the vital ingredient of skilled professional medical oversight of her health issues. I will admit here that mum was her own worst enemy as she would much prefer to suffer in silence than seek timely help. She had also learnt to distrust her local GP as he tended to make decisions on her medications against the advice of her oncologist who she had learnt to have a deep trust in. The GP also seemed incapable of making home visits himself or getting district nurses to visit her when she was seriously ill and unable to get to the surgery.
The result of this was that she had a serious health condition develop gradually with no one realising the seriousness of what was happening. The employed carer was concerned and wanted mum to seek help, I tried to get her to a doctor, or a doctor to her, but no one came until it became a crisis and she was found so unwell early one morning by the carer that an ambulance was called. She was in hospital for about 3 weeks before the hospital talked of her being discharged. I asked to be involved in any decision to discharge her as I would need to get the carers going back in and needed to know what extra help she may need to support her. I also wanted to try and get a regular district nurse visit to her when back at home so that any emerging problems could be dealt with in a timely manner. The newly qualified young doctor who told me about her being discharged was the one I made these requests to. I was told in no uncertain terms that it was none of my business as the doctors were the professionals and I did not know what I was talking about.
Apart from being shocked and angered by such a rude and inappropriate response to what I thought were reasonable and responsible requests, I told them they had discharged her into an unsafe environment before and I was determined it would not happen again. Again I was told they were professionals and they knew what they were doing. I pointed out that my mother had put in place an Enduring Power of Attorney very specifically so that I could speak on her behalf in such situations. They chose to ignore that and discharged her anyway. Thankfully I had already contacted the care agency and they had their people on standby and be there when I accompanied her home. So again, this time with more vigour, I complained making it a formal written complaint. Again, they apologised, said they would learn lessons, and it would not happen again. They asked me sit in on a meeting to discuss the issues but I declined pointing out that the problems were obvious, and they should just get round to properly carrying out the procedures they had already established.
So mum was back where she wanted to be and with a compromise between her and me as to what level of care support she needed as against what she would accept. Not ideal but it was as good as I could get her to agree to. To me the vital missing ingredient was the lack of medical oversight. I went directly to the district nurses and was told that they only visit people with a specific nursing need such as dressing wounds. I warned that my mother was likely get into another crisis situation without such supervision and was told to contact her doctor when the crisis struck. I always though prevention was an important part of the health service provision, clearly not in those circumstances and despite proven risks.
Within months another serious problem arose in which she refused help with until she was in absolute agony with and again an ambulance was called. An ambulance had been called a month before when, during the night, neighbours heard her cry out in agony. On that occasion she refused to go to hospital or be properly checked over, she sent the ambulance away. This time she was admitted as an emergency as the growing problem had become critical. In hospital she continued to decline and was not expected to survive. She did, just, but as she said it ruined her 90th birthday, it occurring while she was in hospital on the brink. This time things had to be different as she was clearly not able to look after herself and had been left very frail. The specialist doctor told me that they were going to diagnose her as in need of palliative care, this means that they considered she was dying and just need care suitable to an imminent end of life.
The next post will be the last in this story of my and my families health care experiences and will deal with, yet again, the complicated and fraught process of seeking a suitable nursing home.
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