Written evidence from Anonymous (HCS0058)
Our mother was diagnosed with dementia in 2012. Very sadly diagnosis had come late in her illness and she had already lost a lot of mental capacity. It was up to my sister and I to try and help her as best we could. Being well familiar with the lack of good residential care on the Isle of Wight where she lived we decided immediately that we would care for her in her own home. We split the caring as I did not work and lived on the mainland so I made the trip on the Tuesday and looked after her until Friday evening and when I went home my sister would take over. It was very, very hard, emotionally and physically but we loved our mother and we wanted to do our best. I do recall her saying though ‘that you could never look after me if I got dementia, you would not be able to cope and I would have to have specialist care.’ There was a care manager but he was not much support and there was a psychiatrist who apart from prescribing tablets was not able to offer anything else.
Trying to care for someone 24/7 when that person hardly goes to bed and is up to all sorts of things during the night was hard. With very little sleep we were totally exhausted, but still determined that our mother’s care would remain in the family. Eventually as her illness quickly progressed respite was mentioned. But it was difficult finding anywhere who had the expertise to look after her. One care home which she went to for the weekend rang me and said that our mother had behavioural problems and very challenging and aggressive behaviour. She said she had obviously been ‘spoilt’ at home. We later found out that she had been locked in her room and was screaming to get out. She was in tears when my sister collected her and obviously never went back there. When she got home she was so upset that all she could keep repeating was ‘I want to go home’. It was heart breaking. I think we tried about four different places and none of them could look after her and our mother was very upset at being put in these places and receiving such bad treatment.
And then in February 2013 she took a fall and had a complex fracture to her shoulder. She spent some five days in hospital and had hardly been in there when the hospital social worker wanted her out. We could not manage her at home with her injury and so we asked if there was somewhere she could go to recuperate until she was well enough to return home. We were not sure what sort of care she needed as our mother had a severe heart problem and other physical problems as well as dementia and now a broken shoulder that was in a sling. We were given the names of three homes which we were told met the criteria for her care and there was a lot of pressure on us to quickly decide on one and to remove her from hospital. Out of the three we visited just one home seemed suitable…it was described as a secure dementia home with person centred care. It was relatively new, with friendly staff, home cooking and a daily activities programme. The rooms were lovely and had French windows leading on to a garden. The social worker said the home was suitable for the complex needs of our mother but sadly we soon found out that it was not.
Our mother was keen to leave the hospital – particularly since there had been little understanding of her needs on the medical ward she had been placed on. The deputy manager from the home came and assessed our mother on the ward one Friday morning and later that day she was moved to the home. But it soon became clear that the home was not able to cope with our mother’s dementia. Apparently she was screaming a lot and we asked the home to contact the Dementia Intensive support service, an outreach team who knew our mother well and were excellent in understanding and helping her. But the home did not. By day five our poor mother still had not calmed down. She was due weekly visits to the fracture clinic but the ambulance arrived at her own home not the residential home and so she never got to have this crucial first out patients appointment. She had refused to wear the sling (not surprisingly when she had severe osteoporosis in her neck which caused her a lot of pain) and my sister, who visited her daily, said she looked very ill. She was left in her room because the carers said it was difficult to put her in the wheelchair and they could not deal with her physical aggression. Seeing that she was in heart failure, had severe osteoporosis, arthritis as well as a broken shoulder I don’t think this ‘aggression’ could have amounted to much….my sister said she was massively weak and broken in spirit. I travelled from the mainland and paid an unannounced visit after she had been in the home just under a week. I walked into her room at 12.15pm and was mortified by what I found. The following is a description of the events in a letter of complaint I wrote to the home’s manager: ‘I entered her room – the door had been left open and found my mother sitting in a chair by the window. The curtains were pulled shut and the main light was on. She was dressed only in a pair of pants (not her own) with a soiled incontinence pad. Her chest was entirely bare and her dressing gown just covered her shoulders. The room smelt and it was evident that mother was sitting in her own urine and faeces. The call button had been left on the bed, totally out of reach of my mother who, at the moment is unable to walk. She was visibly distressed and said that she had been waiting ages for help. She was shivering and felt cold to the touch.
When a male cleaner, knocked and asked if it was OK for him to come in and clean I said it was OK and hurriedly tried to make my mum a little more decent by pulling over her dressing gown. Eventually, two carers appeared and my mother told them that she had been sitting there for ages and the carer said: ‘Yes, I know, I am sorry.’ She ran the water and quickly wiped a flannel under my mother’s arms, no soap was used. They tried to stand my mother up but were unable to. By this time my mother was feeling very unwell, she was in a lot of pain from her broken shoulder and her knees (she has osteoarthritis). They said they did not have time to wash or change her below and so then tried to hoist my mother’s skirt over her head. One carer tried to put my mother’s good hand up through the opening of the skirt before the other said that the injured hand should go through first. One carer then attempted to yank my mother’s fractured arm through the skirt’s opening. My mother cried out and the carers then decided they had to leave. I believe they were needed for lunch duty. When I pointed out that she was cold they put an old blanket over her (which actually belongs to the ambulance service and has seen better days). They said they would be back. My mother by this time was very upset and I tried to calm her. Not unsurprisingly my mother said that she did not want any lunch as she felt too unwell but when offered a choice of desserts she opted for peaches and ice cream. I tried to help her by cutting up the peaches but I was unable to persuade her to eat other than a few tiny mouthfuls.
After some considerable time a carer returned and tried to lift mother out of the chair with my help. Again this was without success. She then said that mother needed a hoist and that she had not been assessed for a hoist so she could not do anything. Again my mother was left, still cold and dirty. Eventually when she failed to return I went to find her and found her in the TV lounge. I asked her what was going on and she said that she was waiting for help. By now the time was around 2.15, other residents had been dressed for ages and had lunched and were now mostly asleep in the TV lounge. Around ten minutes later two carers came into my mother’s room. My mother was lifted without any trouble and I was horrified to see that she was doubly soiled. One carer also remarked that she had two pressure sores on her bottom.
My sister, and I are horrified by the lack of care experienced by our mother on this day. We do understand that owing to her vascular dementia she can exhibit challenging behaviour. But on this particular day she was comparatively lucid, and she made it very clear that she needed help. I hate to think what would have happened to her if I had not visited. My sister and I have been loath to have our mother placed in a care home because we feared that something like this could happen. We care for her in her bungalow, taking it in turns 24/7. The only reason she is in a home was for convalescence as we realised that with her severely fractured humerus we would be unable to manage her at home. We were also hoping that with some care from yourselves who profess to be experts in the field of dementia, that she would be helped to recover her confidence that has been lost since she had this devastating fall.
We had very high hopes of this home as we were impressed by the accommodation, the friendly staff and most importantly by the opportunity for stimulating activities. We now feel that on this particular day the Petals acronym was absent and consequently both our mother’s health and wellbeing was adversely affected. Our mother’s right to privacy and dignity was ignored as she sat in her room in view of any passer by without clothes in a dirty towel. There was no person centred care: my mother has a complex fracture which is painful and she also has a severe heart conditions, as well as other health issues and vascular dementia. It is simply not good practice to leave someone so vulnerable in such a state, feeling cold and dirty for so long. As for empowerment, I do not think it was very empowering for the care bell to be left on the other side of the room out of reach; I wonder what might have happened if my mother had tried to reach it and had fallen.
My sister visited our mother today and asked to see a copy of her care plan because there seems to be a lack of communication. She noted that the care plan described mother as incontinent. If she is then it is only because the home has treated her as being so. When she left her bungalow she was able to use the toilet on her own, she did sometimes have accidents if she could not reach the toilet quickly enough, and for this reason wore sanitary towels. She does occasionally experience problems as she has an undiagnosed bowel complaint and when she has been sick with frequent UTIs. Our mother was also able to mobilise herself round her bungalow with the aid of a stick, and without it when she lost it. Our hope is that she can be helped to return to this former level of health.
I made a formal complaint immediately to the home. The following day my sister visited and spoke to the manager who acknowledges the complaint. Safeguarding were informed and then both the home’s manager and her social worker said that due to our mother’s complex care needs the home could not look after her. Our mother was massively unhappy and distressed and had hardly eaten for 10 days. It transpires that she had been in a lot of pain. The GP was called out and he gave our mother a patch for pain relief – apparently the paracetamol had not helped her….not surprising since this was a broken bone on top of many other painful conditions. I am feeling guilty as hell….I should have checked the medication and should not have trusted to professionals.
We should never have put her in this wretched home but it was recommended as suitable by her own care manager and social services. ‘I could see this coming’ said the care manager. ‘It is not that your mother is exceptionally bad, I have seen worse, but this sort of thing happens a lot where the care home can’t cope and another has to be found.’ I hated our mother being spoken about in such a way. She was not bad, she was ill and the recommended care home that had promised so much was totally unable to look after her. There was no person centred care in fact there was hardly any care. I was advised to now find another home for our mother but this time, a nursing home. While I was doing this she was rushed into hospital. Her broken arm had swelled up and had turned blue and she was having trouble breathing. No staff member accompanied her in the ambulance and on arrival at hospital she spent seven very uncomfortable hours on a hospital trolley. Thank goodness my sister was with her. She never got back to her beloved home….she died the following day. Her last 12 days must have been about the worst she had ever suffered in her life due to the neglect of the care home and all those who had let her down. An inquest followed. The coroner slated the care home saying the treatment of our mother was shocking. The coroner said that both assessors from the home lacked experience and failed to identify many of our mother’s needs, leaving staff unprepared. The deputy manager said she failed to check our mother’s medication or care plan. A total of nine staff from the home and hospital appeared at the inquest and were admonished by the coroner for their shortcomings. The coroner said she had not had the misfortune to deal with such a care home on the island before and hoped not to do so again. She said: ‘There were many failures of care. It was shocking to read and awful to hear.’
These were the very reasons that we chose to look after our mother in her own home where our mother had more opportunity to control her life. Something she lost when she spent 10 days in that care home which cost her life. It has left us with deep feelings of guilt and a mistrust of so called care professionals…..especially as I now have been diagnosed with Alzheimer’s disease.
01/04/2022