Helen’s Story

Hello my name is Helen and I am a volunteer with the young onset group Kindred Spirits.  I was a carer for my husband Alan for over seven years following his Alzheimer’s diagnosis..   He was a geologist and an extremely active man who enjoyed walking, golf, gardening and travel.  We had spent several years in Africa, where our 2 children were born, and then lived in Hong Kong before moving back the UK permanently. I was a Head Teacher in a primary school and retired when I was 60 when it became increasingly obvious that Alan needed more support to enable him to continue doing the things we enjoyed together.

Alan began to show early signs of cognitive decline when he was 58 but had no formal diagnosis until he was 62.  For several years we travelled and planned holidays to places, which were familiar to him or with relatives and friends who were understanding and supportive.  He still played golf and enjoyed meeting friends for a drink at the local pub and we overcame each new challenge together.  Unfortunately Alan lost the ability to hold a conversation and I would help him to express himself (I could second guess what he was trying to say after 45 years together!!).   As you can imagine this made him increasingly agitated and anxious.  Despite all the difficulties there was a great deal of laughter and our grandsons loved the fact that Pa enjoyed playing with toy cars and building Lego as much as they did!!  This was a simple way for Alan to communicate with them without needing to use language.

Sadly Alan passed away a year ago.  Reflecting back on our journey I realized that I would have loved the opportunity to meet other families coping with Young Onset Dementia.  Alan was extremely private about his diagnosis.  Had he been part of a support group, where there were others of a similar age, I am sure he would have been less reluctant to talk about it.  It would also have given me the opportunity to express my feelings to others who understood.  When I heard about Kindred Spirits I realized that this might be a good way to help others living with the diagnosis.  Everyone’s journey is different but, having other people around who are having similar experiences, gives an opportunity for discussion and support..  They are a lively bunch and there is lots of laughter at the meetings I am enjoying being part of the team.

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