Annual Meeting

A Carer Perspective

Helen Shepherd, Carer, presented at our recent annual meeting and gave a very heartfelt and moving speech about her role as a carer.  With her permission, we are pleased to share this with you here.

"Good evening, my name is Helen Shepherd and I have been invited to speak to you tonight about the impact YPWD has had on my life as a carer.  This is of course something I am more than happy to do as YPWD has been a lifeline for us over the past 4 years.

Our story so far:
My husband Den was diagnosed with Alzheimer’s Posterior Cortical Atrophy in 2010 at the John Radcliffe Hospital. This is a rarer atypical form of Alzheimer’s disease affecting primarily Vision, Spatial awareness and Cognitive skills.

We left the hospital clutching leaflets about coffee mornings and walking groups and meetings with other people with a diagnosis.  We made our journey home, mostly in silence.

Den had had to leave work in 2009 but I still worked full time in a very demanding job, but it wasn’t long before I found that I needed to reduce my hours and then finally in 2012 I took early retirement to become Den’s full time carer.
This was quite a low point in our lives.

I picked up the leaflets from the John Radcliffe but all the events were in the surrounding area of Oxford and beyond and not something you would just pop to and have a coffee.  I started to research about services and found details of YPWD; I emailed and got a reply the same evening from Peter Watson.  From that point we haven’t looked back.

YPWD have given me happiness back into my life and purpose.  By attending the first 6 week education course I gained the confidence and knowledge to put things in place, but this was also the first introduction to other carers in the same position.  Friendships made are still strong to this day 4 years later, and we have met socially ever since. As time has gone on some of these friends have lost their fight with this terrible disease, but because of our friendships and the support of the staff of YPWD we are able to support one another through these very difficult times.

The workshops YPWD offer are extremely well thought out and executed enabling attendees to rekindle skills, and for some needing to adapt, the opportunity to try new techniques. The variety is amazing and they are always listening to feedback to tailor, adapt or find new ideas to try.  To this end it means that our loved ones who attend are engaged, have a sense of achievement and most of all are happy.

I mentioned support earlier and this is in abundance from YPWD.  At the end of last year I suffered a mini stroke which was a wakeup call.  The support I received was amazing from the team who took over my responsibilities to get Den to the workshops, as I was unable to drive for 6 weeks, to a regular visit from the Admiral Nurse to ensure I was progressing well.

YPWD have also supported me to set up a PCA support group that meet every 6 months, where people with the diagnosis of PCA can come along for a very informative 2 hour session. It will consist of a couple of speakers and of course at the later part of the meeting a get together to discuss coping strategies etc.

I would urge everyone involved in raising funds, grants etc. for YPWD to please continue to enable them to grow so that many more Younger People with Dementia can benefit from this fantastic charity.   

Thank you for listening."