A Carer’s Story

Dementia Carers’ Support Service

Barry Sutton is a volunteer with CPFT’s Dementia Carers’ Support Service. Barry is one of a number of volunteers with lived experience of caring for someone with dementia who will support carers who are currently looking after a loved one with the disease. Barry tells us his story…

In February 2002, my wife Anne, who was 52 and a care assistant, had been having problems with remembering things at work. There followed a long diagnostic process, considering all the possible causes, but she was finally diagnosed with Alzheimer’s Disease in November 2002 after an MRI scan.

It felt as if, in our early 50s, our future – seeing the children settled, perhaps having grandchildren and enjoying retirement together – had been effectively cancelled. We also felt a bit isolated as virtually all our family and old friends lived in the Midlands and we didn’t want to burden our daughters who had moved out and were just starting out on their own independent lives. But, after the initial diagnosis, we had excellent support from the NHS Young Onset Dementia Nurse (Lynne McDonald) who advised and guided us towards other sources of help.

I had to carry on working; trying to pay off the mortgage as fast as possible and, over the following few years, we had ever-increasing input from external carers, mostly funded by the former “Direct Payments” scheme. We were among the pioneers of the use of this scheme for persons with a “mental” rather than just a “physical” disability.

Eventually, after a few years, we had an agency carer for eight hours a day, five days a week but, as my wife’s ability to do anything for herself declined and instances of “difficult behaviour” became more frequent and prolonged, I found I could no longer concentrate on work and finally had to retire in May 2007 to look after her full-time. We could just about scrape by financially by then. I envisaged having to move the beds downstairs and making whatever other changes were practical so that I could care for her at home for as long as possible.

She had one violently hysterical episode late on Christmas Day 2007 which I finally couldn’t cope with alone. On Boxing Day, I rang the paramedics and she was sedated and admitted to Denbigh Ward at Fulbourn Hospital. After a month or so I was glad to have her home again. She continued to have her good and bad days but I was able to cope because I’d managed to retain some of the Monday-to-Friday daytime care cover. And then, in April 2008, I had a great shock when my wife died very suddenly, virtually in my arms, from a pulmonary embolism. She’d had her 59th birthday a few weeks before and we’d just had our 38th wedding anniversary.

People inevitably said that it was “a blessing” and a release for Anne and, in hindsight, they were right. At the time, however, I was pretty distraught and got very depressed – after all, we’d been together for 40 years.

Joining DCSS – time moves on

In January 2011, I was contacted by a lady called Fe Franklin, who was starting up an NHS-sponsored scheme whereby people who had previously been carers could be introduced to current carers with a view to offering support and possible advice, based on their own experience. It would require about an hour per week plus attendance at regular monthly meetings to share feedback with Fe, who was the supervisor, and the other volunteers (of whom there were none at the time). Carers would be “matched” with their volunteer befrienders by Fe and the other supervisor, Sally Kitchin, who would assess who had the most relevant experience. They would also look at which people would be most likely to get on with each other.

They asked would I like to be a volunteer? I had to consider at first whether it might upset me too much to be involved. Having started to put my life back together following my wife’s death, would it dredge up all the bad memories about Anne’s illness and what we both went through?

In the end I decided to give it a go, feeling that it was a worthwhile thing to do. I reasoned that, if I could help anyone else at all, it might somehow make what had been a very painful and negative experience for me into a more positive thing. I also felt that my wife had been a very caring person – she loved working as a care assistant – and that it was something that she would have wanted me to do.

So, I had the CRB check, passed the obligatory “online training” modules, which involved ticking boxes – possibly in all senses of the phrase – and then the group training sessions where I was able to meet other volunteers. I finally received my ID badge and joined the “wonderful world of acronyms” as an NHS volunteer in the DCSS for CPFT.

In May 2011, I was introduced to my first two carers, soon to be followed by another four. I am currently regularly in contact with seven carers.

What we’ve done since?

So what do we actually do? The idea is to keep in regular contact with our carers by phone, e-mail, meetings or visits as appropriate. I do a mix of these, although the visits are hampered a bit by the fact that I live near Royston and the majority of my carers are north or east of Cambridge or in Ely! I also suffer from what I think is probably a problem mostly restricted to old blokes like me – that is, the reluctance to ring people “just for a chat”! I tell myself that it’s probably the wrong time of day, that people might be out, or eating, or otherwise busy and resent the intrusion.

When I finally do phone, though, people seem happy to chat away, often for quite a long time – not only about difficulties they have experienced in their caring role, but sometimes just about life in general. While we inevitably talk about the person they care for, we also try to focus on their own health. How are they feeling? How are they coping, and so on. A lot of it consists of emotional support but we can also sometimes help by directing them to other sources of practical support they might not be aware of.

The feedback we get from Fe and Sally is that the carers really do appreciate the chance to talk to someone who understands from personal experience what they are going through. They welcome the chance to “get things off their chest” and often get some useful advice in return.

As a further driver of the work, we have the discipline of the monthly peer group supervisory meetings I mentioned earlier, during which the volunteers can share information on the work of the contacts they’ve had. We might discuss any common or new problems encountered, and swap ideas on how they might best be overcome.

We have also started up several “drop-in” type meetings where carers can talk to other carers about their problems and share information on sources of help and strategies for coping. The one I’m involved with is called the “Friday Club”, held fortnightly at the New Cottages Day Care Centre in Ely. It’s currently the only one where carers can bring their cared-for along with them (depending on numbers and resources). The cared-for can be looked after for an hour or so in a safe environment while I and another volunteer host the carers’ meeting. If anyone gets agitated at being separated, their own carer is only along the corridor and can quickly intervene, but mostly we cope pretty well.

The aim, as always, is to reduce the sense of isolation and helplessness that carers often feel when coping with a loved one’s dementia – behaviour problems, lack of, or confusion about, sources of help and support, and so on. We try to get them to network and we consider it a great success if carers actually start to network with each other outside of these meetings and their regular DCSS contacts.

If and when carers are not able to cope, it inevitably starts to cost the state more. The country faces “a tsunami of dementia cases” (Daily Telegraph) – a million diagnosed cases by 2020 and growing with wholly inadequate numbers of residential care places. Dementia carers will become an ever more important factor in the economics of health care provision – as, probably, will volunteers! Initiatives such as the DCSS show ways in which these potential assets might usefully be combined and are therefore deserving of continuing support and encouragement.

After my initial reservations in early 2011, I’m now very proud of my involvement with the DCSS, and happy with this chance, even in a small way, to make a difference to people’s lives.”

Barry Sutton
Dementia Carers’ Support Service

For more information and how to get involved with the dementia carers support service