Our stories - living with Young Onset Dementia

Over the next few months we are going to be highlighting the personal stories of some of the carers and people with dementia that use YPWD.  In this first article we hear from Jo and Martin first, followed by Hannah and Neil.  Our thanks to them for highlighting their challenges and allowing us to share them with our readers.

JO and MARTIN'S STORY

Since Martin was diagnosed with young onset dementia, it has been a difficult time for him and his loved ones. The team at YPWD first met Martin when he was 48 years old. Martin and his family have now been supported by YPWD for nearly six years.

During this time, he has taken part in many workshops with the charity – some of these include gardening, photography and archery. Martin’s wife and carer Jo has kindly given us a brief insight into their lives living with Martin's diagnosis.

How has Young Onset Dementia impacted your lives?

It's had an enormous impact. Martin stopped work before he was diagnosed (as he was having difficulties managing to perform in a high stressed role), and so all responsibilities (financial and parenting) rest with me now. 

As his condition has worsened, his ability to participate in and/or engage with family and friends has also diminished, leaving us with fewer and fewer options to do things as a family. Travel (when allowed) is limited and stressful, so the opportunities for us are severely restricted. Our children have lost their father and my life is on hold. While we make the best of it, it has been devastating.

How has YPWD made a difference for you and Martin?

YPWD has provided support for the whole family. There are the workshops for Martin, and regular contact with the team. We have been put in touch with other families who are also going through the same/similar circumstances, which is enormously helpful for me and the children, and the whole team work hard to keep in touch and provide useful help, advice and practical support when required. It's made a very difficult situation easier to cope with.

HANNAH and NEIL'S STORY

Since receiving a diagnosis for Young Onset Dementia, Neil and his family have faced many challenges and struggles which they could never have foreseen. During Neil’s time with YPWD, he has loved taking part in a range of workshops, from Katakanuing and badminton to gardening and choir. Neil’s wife and carer Hannah has kindly taken the time to write an open and honest illustration of their family’s lives, supporting Neil with Young Onset Dementia.

Since Neil’s diagnosis with Young Onset Alzheimer’s disease our whole life has been turned upside down. Neil had to give up work at the age of 51 and had no purpose and lost confidence. We had to downsize our home and eventually I had to give up work. We have young children and they have found it hard adjusting to their father’s illness. Both have received support from school, but also benefitted from the art therapy organised by our Admiral Nurse Lizzie and YPWD.

It is now increasingly hard to do normal family activities together such as outings and holidays on our own, so the girls miss out. They also now help their father with his clothes, food and medicine so have become young carers. 

It is very isolating and lonely caring for someone with Young Onset Dementia. They are no longer able to have easy conversations and so I miss chatting with my husband and making joint decisions - everything is now up to me. It is also harder to go out with friends because he can’t be left alone for any length of time and you can’t get a babysitter for the kids and my husband. 

There is no aspect of our lives that hasn’t been impacted. It is a struggle but thank god we live in an area where there is YPWD to give respite to me and support and stimulation for Neil. Many people don’t even have that.

Neil says:

The choir is good. I like seeing all the people and am looking forward to going back and singing. I like the choir and the people that do it, it makes it easy to do it – they’re all very kind and nice and we have a laugh. I’ve missed it to be honest.