How support helped Kevin to cope after dementia saw his wife of 45 years go into care
WHEN Kevin Marshall’s wife, Jane, started showing dementia symptoms aged just 63 and went into hospital, his life turned upside down in the space of three months.
Jane, Kevin’s wife of almost 45 years, did not leave for 18 weeks, before being placed into a care home last year.
Kevin, of Alvaston, was then faced with the gut-wrenching task of explaining to family and friends what had happened, while also trying to come to terms with the loss of his wife as he knew her and being at home on his own.
The 65-year-old said: “I wanted her to come home but they arranged for a visit home with nursing staff to see whether she’d be able to cope.
“It helped me to realise that she wouldn’t be able to come home again. The hardest part was talking to friends and family as they all had Jane’s best interests at heart, but I was having to repeat it over and over and I couldn’t cope with it. I was in a cocoon. I didn’t want to know anyone, or anything.”
Dementia, according to the Alzheimer’s Society, is an umbrella term used to describe a range of symptoms relating to a decline in brain functioning, which can include memory loss, difficulty solving problems and changes to language and behaviour. Alzheimer’s is the most common form of the disease, followed by vascular dementia.
Alzheimer’s UK, a separate group, says that 944,000 people nationwide are living with dementia of some form. The charity estimates that between 1,000 and 1,500 people live with the disease in each of Derbyshire’s parliamentary constituencies.
But those figures don’t take into account the number of people who must then become full-time carers for their loved ones. While some are retired, like Kevin, others have to give up their careers to care for their family members.
Kevin still visits Jane every day at her care home in Castle Donington. He says he doesn’t feel right if he doesn’t go. But in the meantime, he was left in the house on his own, adjusting to life at home without Jane being there. That is when he was put in touch with support groups.
He said: “I never knew until all this happened, that I had been a carer for years.
“One doctor at the hospital said, what you have to get into your head, is that when you’re caring, you’re grieving for someone who is still alive. It starts the minute you get up, and it’s like Groundhog Day, things are different every day but you learn to deal with it.”
Callie Jackson is a dementia advisor with Derby City Dementia Support. The service is run by the charity, Making Space, and already runs more than a dozen groups for carers and those living with dementia. It also provides several other support services and helps those caring for people living with dementia with practical challenges, such as applying for state welfare benefits, arranging home adaptations and managing finances.
But Callie says there was a distinct need to provide support for those who no longer cared for loved ones, either through them being placed into a formal care setting or through dying. The transition would often leave carers, who in some cases had cared for their loved ones around the clock for years, feeling lost or without purpose.
She said: “As carers, you have to process what is going on and how your dynamic and life have changed overnight. One day it’s like this, and the next it is different. When you look back, you realise you do a little bit more and a little bit more, because you just take it on.
“When someone goes into a care home or passes away, for their carer, what happens to them? Their support groups might not be relevant anymore, but having friends and the social aspects is still very important for support when it comes to things like sorting out the person’s belongings and speaking to family.
“Having the Next Chapter of Caring group is all about moving forward. This group is for them and specific to them, and I don’t know of many groups like this that are for moving forward and what to do next.”
Next Chapter of Caring meets at 11.30am on the second Tuesday of every month at The Argosy, in Manor Road, Littleover. There, the group chat over lunch and are set homework every week.
In June’s meeting, they were tasked with bringing memento boxes, which helped the attendees to remember their loved ones and the times they had together.
Sitting among the group, there are conversations on all sorts of topics, from events around the world, to jovial chats to more serious talks about the ins and outs of care. But there is a mutual respect, understanding and empathy from everyone who attends of the challenges that all have been through while caring for a loved one.
One of the regular attendees is 75-year-old Patricia Gray, whose husband Peter died in 2019. He was diagnosed with vascular dementia in 2009 when he went into hospital for a knee operation, but complications following his surgery meant he was bed-bound for the last 10 years of his life.
Peter and Patricia, of Linton, would have been married 55 years this year, and had three sons together. In his final years, Patricia lovingly cared for her husband, who could only move when placed on a stretcher. She helped to feed, shower and clothe him, but had support from carers who visited several times a day.
“It’s a big, big change, as you always look after your loved one, and all of a sudden you’re on your own. You start wondering whether you should have done this, should have done that, and by coming to the group you can talk to people about exactly how you’re feeling and it makes you feel better. It gives you hope.
“It’s so important that you go out and meet people. It’s so easy to stay at home and think you’ve lost everything, but you haven’t. You can sink or float, and by going out, meeting people and talking to people, it lifts you. Everybody is friendly, and since Peter has passed away, it’s important for me to come to the group and pass my experience on to other people.”
Kevin was apprehensive about visiting a support group, before forcing himself to visit one group run in conjunction with Derby County in the Community. Eventually he became so involved that he began volunteering with service’s groups, and now helps those who continue to care for loved ones with dementia.
He said: “It was the hospital that put me in touch with Making Space. People from Making Space and the hospital helped me to understand how long I have been caring for someone, and it’s that experience that I’m able to offer to try and help.
“Sometimes it gets difficult but I’ve met some really nice people, and I love this group. They told me about this group, which was a new group.
“When you start to talk to people who have gone through a similar experience, not the same as everybody’s experience of dementia is different, but to have the chance to talk to people who understand what you have gone through, it makes you stronger, and I can now talk to my friends and family.
“Coming to things like this has made a huge difference, so much so that I now volunteer to give something back.
“I would encourage everyone now, in a similar position to me, to force themselves out to go to at least one of these groups, because they’ll build up that experience and realise that other people are in their position, who can help them. You realise you’re not on your own.”
You can get in touch with Derby City Dementia Support online or on 01332 497640.