June 14, 2021

From helped to helper, the journey as a volunteer.

The story behind our wonderful volunteer Margot Kelly

Meet Margot Kelly, one of our charities volunteers, full of character, laughter and enjoys a good natter. As with all our volunteers, we are incredibly lucky to have Margot as part of the team.

Margot joined us in 2017 after using the charity throughout her own journey with her partner Alan’s diagnosis. She started noticing the signs of dementia when Alan was 73; he sadly passed in 2017 aged 77.

Alan lived at home with Margot as his carer, she didn’t have much respite bar a little bit of help from occupational therapists; whom referred her to our charity and it was then that she met our counsellor Sian and joined our activity splash chat where she could talk to people, both the charity and other carers.

It wasn’t until later on that Margot became a volunteer. The year Alan died in 2017, Margot took part in the Battle of Flowers, she said “it was amazing, it was so good to see the charity out there to help remove the stigma, which was needed. People need to understand more, to see more, to understand. It’s like they can’t see it so they don’t understand and that needs to change. It’s not that you’ve gone silly in the head, it’s an illness, an illness that can’t be cured”. Margot joined in memory of Alan, and from then on became a volunteer and here she shares her experience.

“I became a volunteer, because I’m passionate, I talk about my experience all the time, it still hurts, but I want to help out as much as I can because I understand, because its therapeutic. It’s good for someone who has lost someone to talk.

Throughout my journey it felt like I was living in a bubble, and when that bubble burst, it was the weirdest thing. You’re so used to thinking, what are they doing, where are they, to then go to nothing. One of the hardest things throughout the journey was Alan always wanted to be with me so it was hard to have a break.

I remember first going to our GP, Alan was very stubborn and difficult, he didn’t think anything was wrong, he would say “Why am I here, there’s nothing wrong with me?!” he passed all the tests and went for a long time without getting diagnosed, just forgetting things but I knew something wasn’t right.

From my experience I would encourage seeing your GP and getting checked ASAP, there isn’t a cure but you can get help to catch it early, to try and slow down progression, so you can try and live a normal life.

The biggest and hardest change to my life was losing the social side, I had to stop everything so I could look after him, to give him all of my attention. It became lonely, as you don’t have a conversation with that person anymore. You can sit & watch television but they’re not really  watching. I’d go a week without laughing, I wouldn’t laugh because I thought, why am I laughing, There’s nothing to laugh about.

Alan withdrew himself as he didn’t understand what was going on. I used to tell him “you have dementia” but he didn’t understand. He loved joining splash chat but it started getting harder after he started withdrawing as he would just stand in the pool. I had to give up my theatre work & going out with friends. Friends would say he’s alright, he wasn’t, but it’s because they couldn’t see it. You have to live with it to know it.

It’s so hard living with that person as you don’t know what they’re going to say or do next, which can be frightening.  One of the biggest feelings I experienced was guilt. Thinking “why didn’t I do this, or why didn’t I do that”. I used to feel guilty because I needed a break, I used to do all sorts of strange things like disappear to the car and grab on to the steering wheel thinking “how am I going to cope” as you just don’t know what that person is going to do, how they’re going to react.”

It’s so difficult and that’s why the carers need help as well. Those are the ones that are struggling, they don’t know what to do, they don’t know how to cope. Their life changes, and that there is the concern as they don’t always have the respite they need. I’ve had someone ring my up screaming down the phone saying “I just don’t know what to do, I don’t know what to do!”

People say it is what it is, and that it’s unfortunate, but it doesn’t make it easier.

I still hear it now, people don’t realise how bad it is, that is why through Dementia Jersey I have met some really great friends, as they understand and it’s kept my going.

It was hard a journey but I learnt so much more through the charity.

That’s why the charity is so great, it connects people. Connecting is just as important as caring, it helps people feel more relaxed as they have the support network and help through activities.”

Since volunteering Margot has become a dementia friend, helped support us in our parish pursuit, helps with activities and does not shy away from shaking a bucket!

She said, “Joining the parish pursuits was amazing, it was great to go out and talk to people. You feel good as you’ve done something worthwhile. What I noticed though, and this is where the stigma is still associated with dementia, is that people don’t want to admit they need help, until they start talking and sharing experiences, helping them realise they are not on the journey alone.

That’s what I found hard, I wasn’t connecting with many people because Alan didn’t want people to know.

Margot said “if anyone has any inkling of their partner, husband, wife, friend or family, contact the charity, make sure you contact them. Get the help you need; get the advice you need. You need to talk, it is no good just getting the leaflets as that can be overwhelming, getting the support and talking is so important. By coming to the charity and speaking to others, I felt more knowledgeable.

There are a lot of people there who are willing to help, you have Sian & Rachel (Dementia advisors) who are fantastic and I’m here to share experience too. Join the community as it’s good to talk. If you’re worried in any way, talk to someone about it, as there’s nothing worse than holding it in.

What I’ve learnt since volunteering for the charity is, it’s the talking that helps, to give someone that comfort. I’d encourage others who are in my position, who are passionate, who are willing to talk and share experiences, to volunteer, so you can help support others new to the journey too. “

We would love to have more volunteers, to be hands on, to share experiences, to join our meeting centre to support those with younger onset dementia, to help in anyway.

If you would like to volunteer, please get in touch with our Volunteer & Activities coordinator Dan Due Heaume on dan@dementia.je / 01534 723519.