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Interview: Isolde Hilt

Anyone who gets to know Denise soon realises: This woman won’t let things get her down so easily. Although some things in life may be difficult, the Irish entrepreneur is always looking for a way to make it easier. It is not for nothing that her business is called „Positive Parties“ (also with a branch in Germany). She and her team provide training and team building for businesses, schools and communities to promote mental health and wellbeing in an entertaining environment. Her motto is making learning fun. Denise Devlin also supports people with learning disabilities, a job she really enjoys.

So it is no surprise that she has found a way for her father, who has Alzheimer’s disease, for herself and her family to enjoy life despite the impact of the disease. In this interview, she shares her experiences with her dad to highlight Dementia Awareness. Her story begins „sensationally“ …

Until recently you had long curly hair. And now it’s cut off. What happened?

For the past few years, I been saying said I would shave my head some day and do it for charity. And then this summer I decided just to ‘go for it!’. The circumstances that brought that about was when my lovely Daddy had to go into Melmont Manor Care Home at the end of June, due to adult safeguarding as his Alzheimer’s progressed.

This then felt like it was the perfect time to do it and my chosen charity was the Alzheimer’s Society. I told the nurses what I was thinking of doing and they suggested I speak to the Nursing Home Manager Hayley, and we make the Head Shave into an open fundraising event and invite the residents and their families. One of the staff, Helen, took it onboard to be event organizer and it became a wonderful party with music and singing, tea and coffee and buns. The room was decorated with balloons, the local papers came along, and we went live on Facebook, so people tuned in from all over the world.

When a person changes more and more, because they forget and can no longer remember, it is not easy for close people to witness this. Your dad has Alzheimer’s disease. How do you experience this change?

It is very difficult for both the person with Alzheimer’s and the people they love. And everyone in a family deals with it differently. A lot of the times, family members don’t want to accept what is happening as they can’t comprehend why their loved one has changed and now doing and saying things that they never would have before. This is where Dementia/Alzheimer’s awareness training is so important so that loved ones can not only hear from medical professionals but others that have lived through the experience.

When Daddy was first diagnosed over 7 years ago, it was thankfully a slow progress. He was still driving the first couple of years of his early stages. And although we as a family were concerned he was adamant not to give up the car and he passed a government drivers test to still drive.  After he stopped driving, he could still use his mobile phone, walk into town for the paper. And although forgetful, remember our names and know where he was for quite a few more years. Now things are very different. Daddy cannot go out alone, he needs help with dressing and personal care, he can’t read anymore and he has forgotten our names.

But you seem to be a woman who doesn’t want to let herself be defeated even in life situations that are not easy. For example, you use the magic and power of music with your dad …

Daddy always loved dancing and in Spring 2022 I found out about the ‘Dementia Friendly Tea Dances’ and the ‘Mayors Tea Dances’ that were being held once a month. So Daddy and I started attending and they brought us both so much joy. These afternoons out with Daddy were to give my Mum, who was his full-time carer, a break and then Dad would come to our house that night for dinner and a sleepover.

Daddy and I’s dancing would not just stop at the Tea Dances. When at home, I would put on Frank Sinatra and we would dance around the sun room. If we were out for lunch or anywhere there was music, there didn’t have to be dancing, but Dad would ask me: ‚Could we dance?‘ And I would go to the band, explain Daddy had Alzheimer’s and ask if we could take to the floor. The answer was always yes, and it melts people’s hearts and Daddy always gets a round of applause, which he loves.

Does your dad still recognise you, especially when you have fun together, like when you dance?

Yes. Daddy still recognizes me, his face lights up when he sees me and calls me darling, but he does not remember my name. He does not call me Denise anymore and he asked me the other day ‘Are your mother and father still alive?’. I told him that he was my Daddy and that he had 3 children – me, James and Jon. Dad’s eyes filled up with tears and he smiled and said: ‘I didn’t know that.’ I hugged him and told him that we all loved him very much. Then I showed him photograhs of Mum, his 3 children and grandchildren. I do that with him everytime I see him.

My daughter Orla who is 18, always says to Daddy every time she sees him: ‘Papa we love you so much, you are so cute.’ So when I show him a photo of Orla he puts on a voice and says, ‘Oh I love you, I love you’ and he laughs. Although Daddy does not remember our names, he always knows Chico our border collie and never forgets his name.  My husband Neil, is a Nurse who works with people with Dementia, says that he feels there are too many human faces for Daddy to remember, but only one, black and white dog. We take Chico in to visit Daddy in the Nursing Home and he loves to see him, and all the other residents do too.

Back to your extraordinary fundraising campaign: How did people react?

Initially people were shocked that I was going to get my curly locks shaved off. I think for a woman and because I had long curly hair, people did find it strange that I would want to make that choice and most women told me I was very brave.

The support was tremendous. People shared my fundraising campaign on social media, the local papers took a great interest and the local business community in Strabane were so supportive. Daddy was a prominent businessman in our town for over 43 years. He had been president of the Chamber of Commerce, a founder member of Strabane Enterprise Agency and Chairman of Cancer Research, to name just a few. 

Also, because I had been sharing on social media, the story and the videos of Daddy and I attending the ‘Mayors Tea Dances’ and the ‘Dementia Friendly Tea Dances,’ these had touched people’s hearts all over the world. So everyone was so wonderful in supporting me in this fundraising campaign for such a worthy cause.

How much did you raise for the Alzheimer’s Society?

The final total was £8,600. This totally exceeded my expectations. When I first created the fundraiser on Facebook, my target was £1,000. Then 15 minutes later, I thought that is too much, I’ll lower the target to £500. However, when I went back into edit it, there was already £78, after only 15 minutes, so I left it as it was. By 11pm there was £1,130 and the fundraiser had only gone live on Facebook at 4pm. It was incredible. People are so generous and kind.

And are more people also aware of the work of the Alzheimer’s Society?

I really do think so. There is not one family that has not been touched by Alzheimer’s in some way. On the lead up to the Head Shave fundraiser, so many people were telling me their stories of their own relatives and how everyone was effected by this heartbreaking illness. The Alzheimer’s Society work towards a world where dementia no longer devastates lives. They do this by giving help to those living with dementia today and providing hope for the future.

How did people react to your razor short haircut? Are you growing your curls back?

People love it. They all say it that it really suits me and that it takes years off me! Lol! And I actually love it too. I was so attached to my curls. The night before the head shave I has a little wobble and left a message with my friend Louisa in New Zealand to say so, and asked her to send me positive vibes to help me! The next morning, I woke up, didn’t feel at all nervous and was all ready for it! It’s as if I processed and ‘let go’ of my fears in my dream state. So when I was actually getting the hair cut off, it felt so liberating and I was enjoying ever minute of the experience.

Anything else that is important to you, that is close to your heart?  

I feel that in relation to Dementia/Alzheimer’s, I have learned that this is a something we have to embrace not reject or deny and wish it will go away. What any of us would want if we had Alzheimer’s is to be loved, nurtured, and for people to have patience, empathy and compassion in our presence.

Daddy’s personality is different now, it’s like he is back ‘in spirit’ dropping all programmes. Its like he is free again, free to be childlike and not care what anyone thinks. That in itself is liberating to witness, a quite conservative catholic man, let go of all his old conditioning and beliefs. Daddy and I will continue to dance, colour in, listen to music, sing and have fun. And I’ll treasure every single moment while I can.

To me, although its heartbreaking at times, Daddy’s Alzheimer’s has also been a gift as I have had the chance to connect with him in such a beautiful heart centered way, that I might never have been able to do otherwise. The ‘Afternoon Teas Dances’ that we attend are ‘food for my soul’. And I now deliver talks called ‘Dancing With Dad’, telling people about our story and how Dementia/Alzheimer’s is not the end. People’s loved ones with this illness, can still have happy lives, if we accept and embrace their conditions and do with them the things that they love.

More informations:

https://positiveparties.com/denise-devlin/

https://www.alzheimers.org.uk/about-us/alzheimers-society-northern-ireland