“It’s special because the girls know what it is like to live with dementia 24/7.”
Meet the DEMI Girls, so called because the all care for partners living with dementia.
Carol, Ray, Sheila, Megan Carol-Ann and Grace met through the Alzheimer Scotland Dementia Resource Centre in Motherwell, where local Dementia Advisor Lorna Hart-Thomson plays a bit of a matchmaker to the people she supports, connecting people with peers she thinks they will hit it off with.
On a sunny morning in Motherwell, Carol, Ray and Sheila join us for a chat, along with Carol-Ann’s husband Jim.
Carol explains: “We’ve all been brought into the group quite gradually. I think Megan was the first one in. She’s away on holiday today but I think we’d all agree she’s the core of the group.
“At first it is easy to get talking to the other carers because you have this huge big thing in common, but after a while you realise that you’ve got loads of other things in common too, outside being married to someone with dementia.”
Ray adds: “I think our friend Grace put it best when she said ‘We’re all each other’s comfort blanket’. We just know we’re there for one another.
“We can meet for coffee or lunch and drinks. More often than not we’re chatting away on Facebook messenger where it’s really easy to let the other girls know that you’re having a bad day. They’ll all pile in with a sympathetic ear. And then there’s Carol-Ann who is always the pragmatic problem solver – she’s always there with good sound advice.”
Sheila says: “It doesn’t really matter how close your existing friends are. Until you’ve gone through this I don’t think it is possible for anyone to really understand. That’s why it is so good to have this group of friends who know exactly what my situation is. We can all learn from each other and get practical and emotional support. We can talk about the stresses of trying to get a care package in place for our husbands, or about how you’re feeling that day. We’re here for everything and anything.”
Ray shares: “Family members and friends only really see a snapshot of how it is. Our friendships have changed. My husband, James, has been in hospital for 7 months now and I can see how heartbroken his best friends are about it all. Other people, when we meet them, don’t know what to say or do and often ignore James. I know it is just because they’re awkward about it and they don’t know how to react.”
So what should old friends do to keep in touch and stay involved?
Carol says: “Just starting with a ‘hello’ directly to the person with dementia is good. Keep an eye on how they are reacting. If they look well and engaged, just keep talking. If they look uncomfortable then give them a bit of space. If you know you’re coming to meet us and you’re feeling embarrassed or nervous about it you can get in touch before and find out how things are. Someone’s carer is likely to be able to tell you what to expect and tips for what works well. Really, just come round as usual.
“My husband, Ian, and I are lucky that we’ve not really lost any friends. Ian’s lost his filter, but I just say to people I can’t do anything about that and we have to laugh about it. Once, when our friends were over for dinner, Ian was getting a bit tired and was asking me if we could leave. I said: ‘We’re at home so we can’t leave’ and he came back saying ‘Well, can they not leave, then?’ which our friends obviously heard. We just made a joke of it with his pal saying ‘I’ve been chucked out of better gaffs than this!’ and it was fine. The very next night we were round at theirs to watch the football as if nothing had happened. You can’t take these things to heart.”
Sheila explains: “Our situation was very different. My husband Billy had some really good friends when he was younger but they moved away and drifted off over the years and it didn’t really seem to bother him – he just never kept in touch. Now it is difficult to get him to accept help. He’s quite a proud and independent man and I just wish I could get him to see that everyone needs friends. With the help of Lorna and the girls we’re hoping to see him become a bit more sociable and getting some visits from some of the other men with dementia.”
Ray says: “Actually, it’s been great just having this chat today. I’ve just realised that I’ve not been inviting friends to the house since James has been away in hospital. I need to do that. We need to make the effort too. Sometimes you forget that with everything else going on. Now we’ve got a date for James getting out of the hospital and arranged for some male carers to help support him once he gets home. I really hope they become James’s friends too. That’s how I’d like it to be.”
Sheila shares: “The best thing about the Demi Girls is that it is real. All the friendships and connections are real and I know I’ve got these girls around me for the rest of my life.”
While the ladies have been talking, Jim’s been sitting quite patiently. It’s difficult to get a word in edge-ways with so many chatty women, but he’s used to it. The husbands have also formed their own friendship groups and Jim has kept up with his old friends and volunteering.
“I meet with Stewart, Megan’s husband, every other week in Costa. It’s a good laugh and I’m slowly getting to know the other folks too.
“I don’t feel like I’ve lost other friends. I still keep in touch by text and play football with a group of friends. Last time I put the ball in the other team’s goal but I put that down to lack of communication and not my dementia!
“I also still volunteer in the local Cancer Research charity shop. I think that it’s really important to keep busy.
“I’m pleased that Carol-Ann has met Megan and the other Demi Girls. They’re a good bunch.”
Carol-Ann, who was at work the day we met the other Demi Girls shared her thoughts with us.
When my husband Jim was diagnosed with dementia it was relief, not because the thought of dementia was in any way an acceptable condition, but it brought to an end for me the uncertainty of what was wrong with Jim.
The only people I found that really understood this were my friends who I met through Alzheimer’s Scotland.
After Jim’s diagnosis we searched, as most people, to find answers. Our post diagnostic support was reluctant to buddy people in the same position. Jim was struggling to identify as someone with dementia. Through Lorna at Alzheimer Scotland he met Mr B. Things changed. Jim found that he wasn’t alone and dementia didn’t define him. Not to be outdone the wives were introduced. Kinships formed with so many similar experiences.
Over time we exchanged thoughts, our characters started to show and we started to get to know each other. We try to meet when we can but keep in touch through messaging and always reach out when one of us is having a bad day.
What is clear when you meet us is that we are strong, focused women. We have only known each other for a very short time but act as if we have been friends for longer. We do not only care for our own partners but are genuinely thoughtful of each other and the situation they are in. We look to the future and want to support the change for the better care for people with dementia in the under 65 age group.
None of us know what the future will hold for our husbands and we all know when the time comes and sadly it will, we will be there to support each other, as we do now.