Cathy
Cathy’s father, who experienced a gradual decline from dementia over nearly a decade, passed away in 2020. Cathy’s mother, who had dementia over 5 years and had previous mental health issues, passed away in 2022. Both parents were cared for at home with paid carers through social services and private agencies. Cathy’s mother was transferred to a care home from 2020-2022.
Cathy, aged 56, is a full-time academic. She was the primary carer for both of her parents, both of whom had dementia. She was caring for her parents from a distance. She has a visual impairment that affects her daily activities. Cathy is White British.
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Cathy was an only child and cared for both parents from a distance (two and a half hours away). Cathy’s mother cared for Cathy’s father during the early stages of his dementia and Cathy contributed to respite care for her mother until she too was diagnosed with dementia. Cathy’s parents needed care and support while living at home. Paid agency carers were organised by Social Services, and there was additional private support that Cathy organised from a carer support charity.
After obtaining Lasting Power of Attorney for property and financial affairs, Cathy managed her parents’ estate and finances. She also monitored her parents’ conditions, interacted with their GP and managed the care that was provided to her parents at home. She also coordinated and managed her parents’ transfer to a care home during the start of the Covid pandemic and lockdown periods. Cathy self-funded her own parents’ care on top of the care that was arranged by Social Services.
Cathy gives her experience of residential care for her mother during Covid-19.
Cathy gives her experience of residential care for her mother during Covid-19.
So they would do things like they would setup a Skype call, they would leave my mum with the i… they only had one iPad per floor for 28 residents, so they would leave my mum with the iPad, and my mum would knock the iPad over, so I would be staring at the ceiling, and she would not understand where the noise was coming from, so that was not ideal. I had three visits which I found incredibly distressing where the setup was, I could visit and sit… there’s… the entrance to the home, has a big entrance door and either side of it are two long windows, and they setup window visits at those doors. So they would have a carer and my mum on the inside, and I would be sat outside on a chair, which was very cold, because the first couple of waves were not in the… in the summer period, and I was allowed a 30 minute window visit with my mum, so we would be talking on a mobile phone.
But my mum found that quite difficult to manage because she couldn’t sort of understand where my voice was coming from, so she would often sit and talk sideways to the carer, who was holding the phone, because she couldn’t work out that it was me that was saying the words that she was hearing. So that was very difficult, and I found that incredibly emotionally draining and distressing. I… I cried my way through at least two of those visits, because they were just horrible. I had… she had one visit in a non-lockdown period when things were… when visits were allowed outside. One of her friends from where… one of her friends from where she lived, was able to come and visit, and we sat outside and socially distanced, wearing masks, wearing PPE, having done Covid tests in order to do that, and he was able to see her and have a kind of a… a visit with her.
Cathy talks about the difficulty moving her mother to residential care in another region.
Cathy talks about the difficulty moving her mother to residential care in another region.
They wanted her out quickly, and what they would have done, had there be… had I not been there, they would have just dumped her in one of the local care homes near the hospital, all of which had the low satisfactory CQC ratings, so they would have just decanted her into the first bed that was available, and I wanted to get her decanted into a home that… where I live, which is a different county, which meant that they had to do the social services assessments and processes to allow her to be moved to this particular home, so that took… that took longer. And then they had to arrange… because she was in hospital, they had to arrange ambulance transport from Greater London to where I live in [place], and again, that took time. So it… I mean it was only… it was only over the course of a week, but it was… I did feel that she was… she was deemed medically fit to leave, but she couldn’t come home: she was only deemed medically fit to come into a care facility and I did not want her to go into the first available bed locally.
Cathy describes the difference between her parents’ dementia progression.
Cathy describes the difference between her parents’ dementia progression.
So my dad, I would… if I was putting it on a graph, I would plot a gentle line downwards to his death: that’s his dementia story, and that took place between, I don’t know, 2012 to 2020, so sort of, yeah, quite a gradual decline over… a longish period of time.
Whereas my mum’s descent, which is complicated by the fact that she had a mental health diagnosis which at the last point included bipolar, so she had some mental health things which may have masked or exacerbated the dementia. She had some fall query, seizure episodes, which took her into hospital, and I would say that after each of her… each of those hospitalisations, she was markedly worse, and she might make a bit of a recovery, but never… she would never get back to where she had been.