In the shoes of Katy, an ex-carer (as observed by her close friend)…

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…

About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives.
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4 Responses to In the shoes of Katy, an ex-carer (as observed by her close friend)…

  1. Katy, I read your story with great interest and empathy. No matter how many people tell you that you did more than enough for your parents I understand how you could wish you could have done more. I do too. It’s the price of love, and the consequences of clutching onto the highest hopes and expectations for those you love.

    For me it has also been a way to try to make up for those (normal) ungrateful childhood years and to say thank you to my parents for still believing in me and loving me.

    I don’t know how it cannot be anything but a deeply depleting experience to keep caring for so many years. It changes a person, and for me at least in some ways, not always for the better. I’m on eleven years too if you count my son with complex special needs, overlapping with both my own parents having dementia. Finding ways to be selfish has been the only way for me to survive and keep giving.

    Good, supportive friends, in the absence of family, is the real holy grail…and you have clearly found a treasure there. Keep well.

    With many thanks for sharing your story and with my warmest wishes,



  2. Helen Jones says:

    My Mum passed away a couple of months ago. The period of readjustment is daunting. I wonder where some of my friends vanished to, respect and love the ones who were supportive during my years of caring, but I also wonder if life will ever be the same. My achilles heel has always been my emotional equilibrium and I’m concerned that my emotional health will suffer.

    Anyone got any advice for onwards and upwards that is becoming backwards and downwards?


  3. Pingback: Round up of “In my shoes” – Dementia Awareness, Week 6 | Whose Shoes?

  4. Katy, you have done a wonderful job of caring, so much that it made you ill. Now,I hope you will take things slowly and remember to smell the roses, this is your time.
    Gill so glad that you are going to write about the problems facing carers after a bereavement. I only spoke about the dreaded letter from the DWP today, which still arrives 10 days to a fortnight after the person has died. Nothing has changed about this, since I first went to Parliament in 2007
    Katy I think you should be very proud of yourself and Karen and Helen. There are no right or wrong ways, if you try your best like you did.


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