My name is Susan. My mother was diagnosed with vascular dementia in 2012. Sadly, she died in 2018 at the age of 83.
I cared for my mother until she had to move into a home.
I worked for the Department of Work and Pensions for 30 years so consider myself as confident, articulate, able to deal with bureaucracy, work my way through systems, able to ask questions and so on.
How wrong I was ! The system right through from the City Council to the NHS to the care/nursing homes broke me physically and broke me mentally.
Social workers, for example, were not interested. Not enough time to sit with me and explain. They were too busy being busy. I ended up not knowing what was happening which meant I then had to make phone calls but I then had to know where/who to phone…………
Then there were the care agencies who came out to see my mother. Never the same carer twice. Mum’s hand-book was never read. I was expected to tell them what to do. I even had a carer who did not know how to make a bed! Just awful.
On 1 January 2014, at the age of 53, I had a stroke and spent six weeks in hospital. The normal stay for s stroke patient is four weeks but my consultant wanted to me to stay in for an additional two weeks to make sure I was as well as I could be to resume my caring duties.
Much of 2014 is a blur however I remember how appallingly bad the social workers and my mother’s carers were. The social workers knew of my stroke. They gave me no help or advice. It was only by speaking to the care agency that I found out that I could have additional help when needed.
On discharge, my consultant advised me to take regular rests and, if needed, to spend a day in bed as strokes leave a sufferer very, very tired.
I remember being exhausted and knew I needed a day in bed. I arranged with the care agency for someone to come in the following day and do additional duties such as ironing. When this ‘carer’ arrived, I was in bed. I heard her speaking, loudly, to my mother then the outburst ‘I’m not ironing. I didn’t come here to iron. It’s not happening’. With that she either came upstairs into my bedroom or shouted at me or she stood at the bottom of the stairs and shouted at me. I had no choice but to ask her to leave and I then got up for the rest of the day. I phoned the agency to complain and, to their credit, acted upon it. Having said that, the same ‘carer’ visited a few months later. Nothing was said by either her or me. Her manner was quiet this time.
In 2015, it was obvious that my mother could no longer remain at home and I took the decision that she needed residential care. The social worker knew of my stroke, knew I couldn’t drive, and knew I couldn’t use public transport so my only means of travel was by taxi. I had to fund the journeys myself. I received no help towards the taxi fares. What the social worker did not tell me was that I entitled to have a social worker collect me and take me to the homes I wanted to visit. I did not find this out until 2017 when the time came for my mother to move into a nursing home. However, I only managed to get one visit with a social worker. All other visits were done by taxi, paid for by me.
Another issue was the Third Party Top-Up for the home that my mother needed to pay. A Social worker told me that I should negotiate the rate. Excuse me? My mother was going into a home; my emotions were all over the place. Why should I have to negotiate?! How dare the social worker say that to me? Why should I even pay it?! When I decided on the home, the social worker told me the amount of the Third Party Top-Up the manager had quoted and told me to negotiate. I didn’t. I just could not. Later, the social worker asked me what the Top-Up was and when I told her she said: ‘you’re stupid, you should have negotiated’.
I do not understand the way in which each home is funded by the owner. I got the impression that the homes were ‘self-sufficient’ ie they had to be responsible for their own funding. One manager said that she could not keep the home open without the Third Party Top-Up. I cannot help but think that the owners just sit-back and rake in the profits. I was told about one home, during the pandemic. who had only one computer and were using this to allow residents to speak to their families. The computer broke. As a result the residents and their families could not keep in touch. The computer was deemed irreparable but, guesses what; the home could not afford to buy a new one. Where were the home’s owners? Where was their duty of care?
When the time then came for my mother to move from care home to nursing home, I was in shock. Why? Because the social workers had not told me that this could happen. So, the choosing, the visiting all started again. That was followed by me having to lie to my mother about why she was moving. The day she moved was, I think, even more traumatic than when she went into the care home.
That my mother had to be uprooted, lied to by me, is unforgivable. I do not understand why care/nursing homes have to be separate. Surely, it would be more cost-effective to have both types of care in the one home? Then my mother - and me - would not have this unnecessary trauma.
The standard of homes I visited when searching for a suitable one for my mum left a lot to be desired. In fact, to this day, I regret that I did not report one of the homes.
My mother was, on the whole, generally well-looked after in the two homes that she did stay in - both the care home and the nursing home . If there was a problem, I made sure I spoke to the manager. The agency staff was awful. It was an agency staff member who phoned to tell me my mother had died. It was just terrible, the way in which she conveyed that news to me. no empathy at all ,I was just told matter of factly and I was distraught.
It is reprehensible that my mother and I should have been the victims of such appalling treatment. Even as I write, I still cannot believe that this incident happened. It was wrong, wrong, wrong
The above is only a snap-shot of my experiences. I have so many other examples I could give. I was continually exhausted throughout. My anxiety was ‘through the roof’. I was not sleeping. I was unhappy and could not enjoy my life. Following my mother’s death, I think it took me over a year to feel myself coming back to me. Yes, I was grieving but the bulk was not my grief rather it was a build-up of the experiences of being in the care system.
The entire system is broken. There is always the shout for more money but more money is not going to help it. The system as it now stands is haemorrhaging money. No additional funding will change this. The entire process is systematically broken.
My aim is to do something about this. I want the people in charge to listen and to respond. No more platitudes, no more demands for money, no more wringing of hands. I want the care system to be fixed.
I have joined tide to enable my voice to be heard. I felt that all the way through my journey with my mum, my voice was being silenced. Now is the time for people to listen !
So, the choosing, the visiting all started again. That was followed by me having to lie to my mother about why she was moving. The day she moved was, I think, even more traumatic than when she went into the care home.