Being a carer: the challenges and the opportunities

Alan Richardson blogs for us about caring for his mother when she was diagnosed with dementia. He found the support offered by doctors and other professionals instrumental in ensuring she had the best quality of life. Alan has now gone on to support others who are diagnosed or caring for people with dementia.

The diagnosis

My mother was diagnosed out of the blue with dementia in 1995 when we were concerned she was not her usual self while on a family holiday. Following the diagnosis, and for the next six years, we went to the same clinic and saw the same consultant and outreach nurse. We were given advice, medication and various aids to support my mother. The continuity of care was fantastic and we were able to build an ongoing understanding which reassured us as a family.

We had holidays, outings and were able to provide a quality of life for her all while being cared for at home. Following a family holiday in 2003, my father sadly passed away and so I, along with a family friend of my parents who had lived with the family since the 1950s, continued caring for my mother at home. Shortly after this I stopped work altogether to become her full time carer.

In 2004 my mother’s swallowing became affected following a mini stroke and speech therapy became involved. Outings became day trips, or trips to the park or town, but as a formerly active lady she still enjoyed a quality of life. Then in 2006 our family friend passed away, and suddenly there was just me.

Accepting help

As I adjusted to my new situation I thought I could cope and get by without any help. I think this is why some carers can become isolated. Not only that but some friends often take a step back and want to recognise you as you were before your caring responsibilities. However, I found that accepting help was the best thing I did and only made me wish I had done it sooner. There are so many support services available and I wouldn’t have known they even existed until I started accepting help such as speaking to organisations who gave me advice on funding and assessments.

Life as a sole carer

The outreach nurse came and recommended the services of the North Somerset Crossroads who arranged for me to have a weekly sitting service to provide me with a short break each week. Amazingly, with their support and support from GP, my mother was still able to enjoy a quality of life. I was able to take her out in a wheelchair as her mobility was not so good, and disabled taxis took us into town, or I took her out and about for rides.

In April 2007, my mother had a more serious mini stroke and this was a whole new experience for me. She also became housebound.

The family doctor came to us and set in place support from the integrated community response team who helped me continue with my mother’s care, and then in conjunction with North Somerset Council social services, a care package was put in place for support. This included provision of a special bed, hoist, chair, the outreach physio, occupational therapy, district nurses and a new support of carers from a local care agency. With this wonderful support my mother was able to continue living with me in her home environment and was content until the very end.

It is sometimes hard to put into words my thanks for the support that had been available since 1995 from the local NHS, local authority and providers of care.

PMDementiafriends

Dementia Friends information session with Prime Minister David Cameron (CC image courtesy of Number10gov via Flickr)

Moving on and helping others

Sine 2009 I have been volunteering with Crossroads and the former PCT- and now with NSCP (North Somerset Community Partnership) sitting on committees and projects representing carers views. Recently I was privileged to talk about caring for someone with dementia at an end of life south west facilitators regional event in Torquay.

I also volunteer as a Dementia Friends Champion. Dementia Friends is a national initiative that is run by the Alzheimer’s Society and aims to improve people’s understanding of dementia and how to live with it. I help to deliver sessions across our area and find it truly rewarding. In February I was also privileged to be one of the Dementia Friends Champions who was invited to an evening reception and a private film viewing of Still Alice at Number 10 Downing Street which was preceded by introductions from PM David Cameron and actress Julianne Moore.

It’s a privilege to share my experience with other people and hope it can be of benefit to those going through the same as I did.

The GMC has guidance, resources and signposts to help doctors deal with dementia and mental health issues related to the care of older people. Find more at Better Care for Older People

Alan--Richardson-Dementia Friend photo

  Alan Richardson, Dementia Friends Champion

4 responses to “Being a carer: the challenges and the opportunities

  1. Pingback: Protecting and promoting people’s rights | General Medical Council·

  2. I wish that everybody could seize a negative experience and turn it into a positive experience by helping others as Alan has done

  3. Pingback: Hoping, coping and talking about planning ahead ‘just in case’ | General Medical Council·

  4. Pingback: Talking to your patient’s family and friends | General Medical Council·

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