Encouraging togetherness and learning in dementia care
PAUL AND LINDA'S REAL LIFE STORY
Linda and Paul Sinclare have been married for 22 years. Originally a teacher, Linda re-trained as child psychotherapist. Her last role was as a Consultant Child Psychotherapist in the Child and Adolescent Mental Health Service team in Tower Hamlets. After having progressively reduced her working week Linda retired in April 2010 aged 61. The nature of the work was stressful and traumatic and it was these factors that were originally attributed to Linda’s distraction and forgetfulness. She would often say ‘my inbox is too full’.
Initially her problems were construed as stress-related, she was treated for depression as defined as pseudo dementia, however, after several brain scans, in December 2011 a loss of volume was evident and a diagnosis of Alzheimer’s was made.
Having gone through an initial reaction of anger, distress and frustration, not wanting others to know of her condition, Linda in her naturally direct and honest way has confronted the illness. She is open, demonstrating publicly that she can lead an active and independent life and shows others that dementia is a battle to be fought.
Linda mostly maintains a positive outlook (she disdains this dreadful illness) and is determined that her dementia will not stand in the way of having an active social life. She has wonderful and supportive friends and an identical twin sister who lives in the US and with whom she can Skype almost daily.
Dementia is life changing for both parties in a relationship. It is nothing Paul and Linda ever expected, particularly so when they were looking forward to an active retirement; it is an exhausting illness for all involved. At one level, it is a heart breaking situation: the thought of losing someone to the ravages of this disease is too painful to contemplate. Currently they can both cope, adapting as things get difficult, (patience is not the virtue Paul thought to be his greatest gift – but he’s learning fast) and they do as much as they can to enjoy their life, unsurprisingly friendships and family provide the greater pleasures. They are also part of an early stage support group, Dire Straits based in Wandsworth, London. The group offers a great support structure, adding new friendships, a sense of belonging and community, and a platform for exchanging ideas, information and experiences.
Linda and Paul have decided to share their experiences of living with dementia so that others will understand better how this unwelcome and relentless condition has impacted upon relationships and life plans. They also want to change the perception that this is just an older person’s illness and that you don’t automatically lose your identity, intelligence, character and humour on diagnosis.