We first learned about Mum’s dementia diagnosis in 2013.
She was 86 and Dad was 88. As the illness progressed, my father became my mother’s full time carer until he died in November of 2015.
My brother and I continued to call on Mum as often as possible and employed carers to visit her every day. We were constantly concerned if this was enough and if she would be OK.
In the early stages of the illness we often noticed she struggled to find words mid-sentence or remember what it was she’d been saying.
But towards the end of her six-year journey with vascular dementia, the momentary gaps had turned into prolonged silences, only broken occasionally by random words – the beginnings of sentences or unanswerable questions. This kept us on our toes as we tried to piece together the inner workings of her mind.
In the spring of 2018 we had a concerning call from the carers to say that Mum had been found unconscious on the sofa. They also reported that she had been refusing food, medications and getting violent with the carers.
It felt more urgent than ever to do things differently.
It was at this point that we agreed as a family that I would move back in with my mother and see if one-to-one care could make a difference. It was clearly a big commitment but one that felt absolutely right.
I was worried I didn’t have the professional training but couldn’t see a viable alternative. My routine obviously changed considerably as I was now away from home for five days a week. Prior to this I was home every night for tea and seeing much more of my partner.
My brother has an academic job and so was quite contractually tied, I was self employed, so it was much easier for me to take on the role. Thankfully, it did make a world of difference.
The main challenge was keeping Mum occupied with something she could enjoy, while at the same time distracting her from the immediacy of her anxieties. Positive distractions included day trips in the car, leafing through old photo albums and reading books or magazines.
I literally spent all day with Mum – I was with her from Monday morning to Friday afternoon. My brother took over on weekends and we also had carers come three times a day.
Mum had always had a great sense of humour, so her witty responses to some of the things that happened during any typical day, would provide the high points and remind me how – despite the cognitive impairment – Mum was still ‘in there’.
For example, one day she looked at me and said ‘Oh I’ve just got no energy left, throw me out with the rubbish, will you!’
The low points for myself were mostly loss of sleep. Mum’s erratic sleep patterns meant that many nights she’d be getting up in the early hours of the morning believing it to be breakfast time, so whatever sleep I managed was constantly interrupted. I felt constantly tired as a result.
Emotionally, it was tough seeing Mum in such a vulnerable state of health.
The only fleeting doubts I had were whether she could be better cared for in a nursing home. She had, by this stage, lost all memories of living in the house she’d been in for over 20 years and often thought she was staying in a guest house.
It was sad that the memories had gone, but such is the nature of the illness. I absolutely loved caring for her though and never regretted the decision and will be forever grateful for the extra time with her.
In May last year, Mum fell at home and broke her hip. I was only in the next room and about to bring her another cup of tea. She’d got up a little too quickly, had a dizzy spell, then fallen awkwardly – narrowly missing the wall with her head as she fell. I’m so glad I was there when it happened.
The paramedics confirmed a fractured right hip. Mum was taken to hospital but sadly never came home.
The hospital experience was long and quite traumatic. Mum would fight with the nurses and staff or constantly wonder why she was there at all.
The house felt strange without her. I stayed on though so I could visit her each day in hospital.
Mum progressed over time from the trauma ward to the rehabilitation ward. Two months later, on the day she was due to leave, Mum unclipped her alarmed movement sensor, stood up from her chair and duly collapsed onto the hard floor, breaking her left hip in the fall. It was heartbreaking news.
Following the subsequent second hip operation, numerous assessments were carried out and after a further two months, Mum was deemed ‘non-rehabilitatable’ and in need of 24-hour nursing care. Having seen Mum’s decline, it felt inevitable but I still felt as though I was letting her down.
Luckily there was a bed available at a local nursing home. The care there was of a very high standard. Even so, Mum still managed to have further falls, the last of which left her very badly bruised and concussed.
Within a week of this last fall in October 2019, Mum passed away peacefully in her room with my brother, myself and our partners at her side.
Looking back, I’m left with only the best of memories. The act of caring for Mum helped to ease the grieving process somehow. It literally gave my love somewhere to go.
Martin Dewhurst is the author of Another Cup of Tea in which he documents his experiences caring for his mother with dementia.
My Life Through A Lens
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source https://metro.co.uk/2020/08/10/cared-mother-final-years-dementia-13058246/
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