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 confident, articulate, and able to deal with bureaucracy. How wrong I was ! Trying to understand the systems of care broke me physically and mentally.

Social workers were not interested. They never had time to sit with me and explain what was happening. They were too busy being busy. I ended up feeling like I never knew what was going on or who I could phone for help.

Care agencies 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 a 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. The care my mother received was appalling. The social workers knew of my stroke. They gave me no help or advice. Only after speaking to the care agency did I find out I could have had additional help when needed. 

In 2015, it was obvious that my mother could no longer remain at home and I decided 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 with the taxi fares. What the social worker did not tell me was that I was entitled to have a social worker collect me and take me to the homes I wanted to visit.  However, I only managed to get one visit with a social worker. All other visits were done by taxi, paid for by me.

Then I was told about 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.

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 even more traumatic than when she went into the care home. 

That my mother had to be uprooted and 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 one home? Then my mother - and me - would not have this unnecessary trauma.

The above is only a snapshot 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 hemorrhaging 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 !