May 25, 2018

Jenny Rayner, Personal Activity Leader summits five active volcanoes for Alzheimer's Research UK | Dementia Action Week

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A few weeks ago we shared with you an inspiring story about Jenny Rayner, Personal Activity Leader (PAL) at a Four Seasons Care Home in York who was about to embark on an expedition to raise money and awareness for Alzheimer’s Research UK.

Not just any expedition… Jenny and her team mates summited five active volcanoes in just seven days including Tajumulco – the highest peak in Central America at an incredible 4,220m! An unbelievable achievement…

Not only this, but Jenny smashed her fundraising target, raising over £4000 for Alzheimer’s Research UK. As this week is ‘Dementia Action Week we thought we would share with you Jenny’s story as we catch up with her just days after she completed this extraordinary expedition.

 

The climb - Why these 5 peaks?

“I’m a volcano fanatic for one and there is a personal link between Alzheimer’s and my father - I love hiking as my father did. Plus I work as an Activities Coordinator in a care home with people living with dementia… and ultimately I really want to find a cure, hopefully at some point Alzheimer’s Research will… I hate seeing people suffer from it, it’s not nice.”

You weren’t alone on the expedition, can you tell us about your team?

“Each and every person who climbed all had a link to dementia through a member of their family or someone they knew. It was quite an emotional experience hearing all the reasons why people did it.

“There were two sisters whose father is still suffering from early-onset Alzheimer’s and it was nice to relate to them. They were asking me questions because obviously my Dad isn’t here anymore, and it’s nice to talk about it with people who are going through the same thing. It can sometimes be hard to talk to those who are close to you because they are still suffering too.”

How did you support each other?

“You motivate each other to keep going for your families, to make sure we get up there. When you get to the top all your emotions come flooding back.

“It was tough at times, for the highest peak we got up at 3am, which was not favourable. There were a couple of days where we started off really early in the morning so we could get up quite quickly while it is cooler. At around 11am it gets really hot. Particularly for the highest peak we wanted to get up there before sunrise so we had to climb half one day and the other half the next morning. We camped one day to allow ourselves to adjust to the high altitude.”

What were the climbing conditions like?

“We had perfect weather, but it was steep, and ash which is very loose and actually made it worse going down because it felt like you were slipping. It wasn’t much better going up as it just seemed to go on and on. But when you’re talking with each other it does go quite quickly and as soon as you get up to the top you forget about it all and you just feel as though you’ve accomplished one more mountain.

“I look at it as though, every time something happens, like with my dad every time he lost something it was like another step or another mountain or hurdle he had to face - and now I’m facing those mountains in his memory.”

Were any of the volcanoes on your dad’s ‘To climb’ list?

“Unfortunately not because he never went abroad, he was UK based only. It’s a shame because if he was still here, he would probably do that with me but it did feel like I was close to him when I was up at the top.”

Congratulations on smashing your fundraising target? How does it feel to have so much support?

“It’s been amazing I didn’t expect to get up to £4000. It is quite overwhelming to know that people are behind you. I think they know my story, so they know about my dad, but there are also strangers who have seen or heard about it and have donated to the page which is really nice. It is surprising how many people are generous and who understand or have a link themselves to it.”

Were there any challenges to overcome?

“For me I have epilepsy and the challenge was the early mornings, the sunlight and the high altitude which can all have an effect on me. So I was going through my own health issues whilst trying to keep pace with everyone else and it’s pushing my own boundaries really. But having the memory of my dad whilst I am doing it kind of pushes you along thinking ‘what would dad do?’ and ‘what would he say if you didn’t get up there?’ I had that in my head, so every time I lost my motivation I would think about things like that.”

What’s next?

“I plan to continue to trace my father’s steps and take photos in same place. There was one in Ben Lomond Scotland that he has done and a few in Wales as well which are on my list to do, a few this year and a few next year.”

Can you tell me about your career?

“I’ve worked in the care home for almost eight years since 2010 and I’ve been the Activities Coordinator for six and a half years. I arrange the activities, the outings and I’m there as somebody to talk to and to keep them company, because some of the residents don’t have any family so I can be with them for as long as they want. All my activities are based on them.

“The way I look at it when I go into work is; if I haven’t made a resident smile then I have not done my job properly.”

Have you taken part in the Dementia Experience? How did you find it?

“Yes. It was really interesting, it helps you to get more of an understanding as to why one of our residents might struggle with everyday tasks, like buttoning up their blouse, and you don’t realise how frustrating that might be for them until you can’t do it yourself.

“It’s important for me to know how our residents feel and since doing the experience I have tried very hard to understand what they can do and what they can’t do and I relate all my activities around them.”

You can find out more about the Dementia Experience here.

Is it rewarding working with people with Dementia?  

“Absolutely, yes and when it happened to my Dad I didn’t know anything about Alzheimer’s so I couldn’t help him the way I can help people now. So that is another reason why I went into care because I just felt like I had not been able to help him and I wanted to help others.”

Can you tell us about your Dad and your experience with Alzheimer’s?

“Before he was diagnosed he would forget things. He would forget to hand things in at work or lose his sense of direction. We thought it might actually be a brain injury or cancer. I had to take him for tests and he couldn’t do any of them, like the puzzles, and when he was diagnosed I was so shocked. I was taken aback because I didn’t think my dad would have that at age 52. That was the first knock back.

“Then over a year, or should I say every day, it felt like there was something else. It was frighteningly fast. One minute he could feed himself and the next he was putting his spoon to his forehead and suddenly he couldn’t go to the toilet. He was frustrated and angry and I didn’t understand it all. I just thought ‘why is he doing that?’, and of course you get aggravated with it at the time because it’s your dad and you can’t understand it.

“In the third year it got to the point where my Mum couldn’t cope with it and I tried to look after him at home when I finished University and I just couldn’t cope with him, you know lashing out at me while I was trying to dress him. You don’t want your daughter dressing you do you and taking you to the loo. So we decided after a while to find a care home and then he caught pneumonia - he didn’t talk and he was quite vacant. Sometimes he would have the emotional eyes, you know, you could tell like when my mum walked in his eyes would light up and his eyebrows would go up. So I knew deep down inside… he was there, but he just couldn’t express it. He was a hiker and he was probably frustrated too because he couldn’t get up on the hills.

“Weirdly he hadn’t spoken all the time he was there and the last day that I saw him he said ‘Goodbye’ which freaked me out, because I wasn’t expecting any words at all and it was almost like he was saying ‘Goodbye, I’m going now’. I’ll never forget that.”

How does your experience help you support our families?

“Yes I do support the families as part of my job, and it does help me understand how they are feeling having been through it myself. They often come to me, and I keep telling them if there is ever a time that you want to talk to me about how you are feeling, or if there is anything that you don’t understand just come to me and even if I can’t help you I can point you in the right direction.

“Knowing that I have been through it, I think makes them feel a bit more comforted as I personally have a link to the emotional side of it. Some people will come to me saying another relative of our resident is acting strangely and if they just imagine what they are seeing, every day their family member could be declining, and it could be weeks before they see them again so the decline seems very rapid and this can be a bit of a shock to our families and people react differently. Having been through it myself I can understand that our families might shout, get angry or get annoyed with things because they are just upset.”

Has the home been supportive?

“Yes! All my friends there and all the team think it’s amazing that I am raising funds. They might not have gone through the same experiences as I have, but they understand why I am doing it.

“As a home were raising money for Dementia UK at the moment were doing a York boat race to raise money for them.”

You can still donate at https://uk.virginmoneygiving.com/Zimmersandslippers

What are your hopes for the future?

“Several things, people to have more awareness of how common it really is and for people to have foresight and to know what to expect if someone has Alzheimer’s or dementia.

“I think people are scared to talk about it and I think a lot of people think ‘it’s an older person’s disease so I don’t have to worry about it’. I think it’s important for people to know about early on-set dementia and to know the signs so people can recognise it early.

“But also I would really like a cure, it probably won’t happen in my lifetime but we can hope…”

Thank you to Jenny for sharing your experiences with us.

If you would like to donate to Jenny’s cause please visit www.justgiving.com/fundraising/jennyraynervolcano

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