Susan & Simon's Dementia Story

Susan’s husband Simon was in the Royal Navy, having completed officer training at Dartmouth. They met though some years later, when they were neighbours, and were there as friends for each other. They later married after Simon left the Navy and had a son together.

Simon became diabetic in his late 20’s and, during a routine health visit, the doctor asked - do you have any other questions and Susan said, “yes, why does my husband walk with this particular gait?” The doctor asked us to go for a referral and I said, ‘You know what it is don't you?’ he said ‘yes, but it's not my field, so you should seek expert advice’

“We went for tests, and the consultant confirmed Simon had had a night-time stroke. He never drove again from that point on. We then discovered, a year so later, that it was vascular dementia which was affecting the whole of his body.”

Simon lost mobility fairly soon after, and then he lost a lot of his speech. Susan says, “But as I found here at Sage House people with dementia can lose their speech, but they will dig down deep enough that when it really matters, they can say something!”

“Simon and I were in and out of Sage House because he was in hospital so often, he used to come here and have his haircut which is a wonderful facility, and the carers and partners of customers can also have their hair cut which is fabulous. Shaun cut our hairs, and is brilliant, and very experienced in looking after people with dementia, he knew exactly how to look after Simon. That is why Sage House is so good, they understand how to care for people who have concerns of any sort.”

Covid was a traumatic time, as it was becoming ever more risky for Susan to care for Simon at home. Susan was Simon’s sole carer at home and thankfully they were able to go together to choose a nursing home just before Covid arrived. They found somewhere that had a military connection which they thought would be good for Simon. “We struggled through Covid to have any communication, and I often found myself looking through a window, a little crack, trying to say, ‘I love you’ and make conversation, but he couldn’t really respond. On the one or two occasions when I was allowed to be in the home rather than outside wrapped up in shawls and masks, I could give him a quick kiss.”

"On my last visit to see him in hospital I played some videos of the grandchildren and held them to his ear - he opened his eyes. I had lunch and I told him what I was eating and that I was going to see our son and the grandchildren, and I said, ‘you know you're going on a journey don't you, but it's fine that you go, just wait for me when you get there.’ I left the hospital and Simon died before I'd left the car park. It seems they wait until you go. But hopefully now he's there and he's got the coffee on…”

Support groups

Sage House have expanded their support groups due to the rising need, and the positive benefits of shared experiences and the understanding that you are not alone.

One of those new groups organised by the Wayfinders was the ‘Grief Café’. Where those attending the sessions have the opportunity to speak without judgement in confidence, receive tailored guidance for their grief, and gain an understanding of healing and wellbeing.

Susan said, ”There were 7 of us at the first meeting, we met in a room with tissues and hugs, and we could exchange our views and experiences, and we’ve kept in touch since. I didn't think I'd continue after the first couple of sessions, I thought I don't want to cry in front of strangers, I just I wanted to go away and be quiet in the corner. But that's the last thing you need to do, and I think that's what it taught us it's good to let it out and help each other along the way. We could all empathise with pain, and we've renamed it the ‘good grief café’ because grief is good, grief is the first stage of healing, it's a never-ending path and the pain doesn't go away you just get used to living with it. The good grief café is a good idea.”

“What is wonderful about being here at Sage House is it doesn't matter if we cry, we've come through a journey, our Wayfinder has the best hugs in the world and an endless box of tissues, and it doesn't matter we've all done the journey, we all know this is our safe space we can come here, be ourselves, we can hold hands, we can have a hug, and it's not just for us girls it's for the chaps as well.”

Volunteering

“Wendy, Anne, and I are now here volunteering at Sage House where we’re able to put something back in our own small ways. It’s a means of picking yourself up on dark days and spreading a little bit of sunshine on days that aren’t so dark.”

“I volunteer on Monday for the activities, with seated exercises in the morning, and singing in the afternoon with a different group. People who can't, or are reluctant to talk, or can't talk as quickly as people without dementia come and they love music, they want to get up, dance, and hug you.

I’ve personally always felt that having had a husband with dementia who's been here that if we as volunteers can make 1 minute of difference to 1 person, make 1 person smile that's what it's all about.”

“I'm quite sure that coming here people made Simon smile, because he had a lovely smile and lovely blue eyes and people commented on that and he could enjoy coming to a safe space where people could look after him and it's just about a big thank you.”

“Sage House is developing as well, absolutely, and so perhaps through our volunteering we can help with that change, development, and growth.”

Friendship

“It’s being able to spend so long being in a privileged position looking after someone you love over this horrendous journey you are both going through. It is your whole reason you get up in the morning and carry on day after day and suddenly that's taken away and the whole purpose of your life is gone overnight, so coming somewhere like this Sage House and being able to talk to people in the same position is invaluable and there is purpose in your life although sometimes you have down days and you don't feel there is, there's always someone you can smile at and somebody who can smile back to you.”

I want to think, if a smile is given to somebody, who then passes that smile on, before the day's out that smile will have travelled around the world. That’s the theory!

Sage House relies on your generous donations to keep offering our essential services. Become a friend of Sage House to continue to be there for people living with dementia now and in the future.

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