On Day 33 of our “in my shoes” series, looking at dementia from different perspectives, we have a very powerful story, looking at what happened to a dedicated carer… when her parents died and her caring role was no longer required. Katy gave permission for her good friend to write up and share the story. It touches upon a very important area – and one where I suspect the real effects, particularly longer-term, may be relatively unknown? And perhaps a lesson to all of us that you cannot simply put your own health and well-being on hold, without risking serious consequences…
What happens to the carer … when the caring role is no longer needed?
Katy was 28 when her journey as a carer began…..
Her parents Bill and Mary were 57 and 46 when Katy was born and in Katy’s early 20’s Bill, who had always been very fit and healthy, had a massive stroke which left him with a still very alert mind, angry and frustrated in a body which no longer worked and he relied totally on the care of his wife Mary.
The stress of caring for Bill ultimately took it’s toll on Mary and 6 years later Mary too had a massive stroke which resulted in the loss of much of her speech, paralysis on the right side of her body and severe vascular dementia.
Everyone, including Katy’s older siblings thought that both Bill and Mary would then move to residential care, but Katy had other ideas.
At the time, Katy was living in her own flat in London, and working in a high pressure job. She was adamant that Bill and Mary would stay in their own home and she made arrangements to rent her flat out and move back to the family home which was around 60 miles from London with the aim of carrying on working and caring for Bill and Mary with input from Social Services during the working day.
Katy’s decision was a big surprise to the rest of the family as in her teens she was the proverbial rebellious wild child and there had been much intergenerational tension between the teenage Katy and her, by then, retired parents.
Katy’s journey as carer lasted for the following 11 years with very little input from her siblings who lived in other areas of the country. Her life during this time revolved around getting up at 4.30am during the week to get ready for the 120 round mile trip for work, and making sure Bill and Mary had what they needed before leaving for a very pressurised working day, taking over from Social Services when she got home to provide whatever care and support Bill and Mary needed during the evening and at night and keeping on top of the housework. Weekends provided some limited degree of respite from this intense slog with the only real break being 4 weeks respite a year.
Sadly, Bill passed away 5 years later, and Katy continued to care for Mary whilst still continuing to work in London until Mary too passed away another 6 years later.
All the while during this 11 year journey, Katy just kept on going like the proverbial Duracell Rabbit, she was never ill, and everyone marvelled at how she did it all.
Very shortly after Mary died, Katy had a complete nervous breakdown. The elastic band that had been stretching, stretching, stretching, stretching over the years had snapped and Katy imploded. She no longer wished to live and was haunted by a sense of guilt that she hadn’t done enough for her parents. The alarm of Katy’s GP over Katy’s ongoing talk about suicide resulted in her being sectioned.
Katy’s experiences during her short time on the psychiatric ward proved to be the catalyst to her eventual recovery, with her survival instinct kicking in and she returned home a few weeks later, returning to work another 5 months later.
15 years on, and still working in a high pressured job, Katy is still haunted by the sense of guilt that she did not do enough for Bill and Mary.
In the above story, Katy had a well paid job, so finance was not a problem. However, some carers rely on a carer’s’allowance, which ends very soon after someone dies… an angle we hope to return to soon…