One mans mission to raise awareness of dementia.
Son, Carer, Campaigner.
Are you a carer?
Please watch my short film, which includes families and carers reading from the letters they sent me.
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Friday, 26 June 2015
Guest Post - Remembering The Love Story - Deborah Hamilton, Community
Todays guest post comes from Deborah Hamilton, Community Links Practitioner for Health and Social Care Alliance Scotland based at the Green Practice in Govan Health Centre. You can follow Deborah on Twitter at @debsmakeslinks
Let see what she has to say….
This reflection is about love and kindness and dedicated to Tommy and his mum Joan.
Not long after I started in practice I got my first referral for a family struggling with the caring role of their fathers fairly advanced dementia. Working with carers and indeed condition of dementia, was new to me so I had found Tommy’s input during our Links worker induction both moving and really helpful in preparing me for the approach required. Little did I know just how helpful it would be.
One of the GP partners referred a lady in her 40’s who was living and caring for her elderly parents, her Mother was now house bound due to a number of long term conditions and her once very active father had developed dementia around six years prior. The family had had previous bad experiences with staff coming into their home following referrals by their GP and this had led to a mistrust of any agency other than their GP team, who they had worked with for many years. She called them to explain my role and sure enough due to their GP endorsement and my being considered just another member of the team, the family agreed for me to visit them at home.
It was a very complex situation for the family with a history of real difficulties and as Dads dementia had developed they had been become even more isolated and fearful he would be removed to a care home, which was not his wish. Unfortunately there could be times when he would become verbally aggressive and he had previously attempted to assault an outside agency when he felt threatened. It was understandable that his family were reluctant to work with services and I had to visit every week for a number of weeks building trust and getting to know them and their experiences.
I had of course come with a carers’ hat on and so much of the initial discussions had been with Mum and daughter who were very much in need of support and onwards referrals. We spent time discussing and preparing them for the range of statutory and voluntary services available to them but I became keen to speak directly with Dad. During visits he would sometimes stay in the back room and I began to get the sense he did not feel valued enough to be contributing to the discussions. On my third or fourth visit he came in when he heard discussions about home care arrangements and respite options. He was agitated and his wife and daughter were worried he might lash out. I suddenly remembered Joan, not just Tommy the carer, but Joan the lady living with Dementia. The lady whose love story had brought me to tears, the lady who still deserved to have her favourite shampoo used, her dignity maintained and her contribution to her community known. My attention turned to this scared and forgotten man in front of me and I knew instantly that kindness was, as ever, the order of the day. I think he felt this and after some important eye contact and addressing him directly, he asked if he could meet me on his own in the kitchen. It became apparent that during all his contact with services over the years, his medication reviews etc. he had not been met on his own and asked ‘what matters to you?’ He might have had dementia but he still had rights and thoughts on how these might be met. He told me he was too embarrassed to allow his daughter to wash him and that his wife was becoming too frail so he had remained unwashed for a long time not having had the opportunity to tell someone this sensitive information. I held his hand. He wanted to maintain his dignity and that of his families but was sacred of people now coming into his home after so many years in isolation. He also told me that he had once enjoyed long walks but could now only go out with his daughter after he had lost his way home shortly after his diagnosis. His daughter is a lovely chatty women and he wanted to walk in silence, as he had done to maintain his wellbeing through years of marriage and raising a large family.
Using the trust of the GP team and the Links approach over the coming months the family became engaged with Carers services. We arranged for a respite carer to take him on long walks but in the silence he preferred whilst his wife and daughter had some time to themselves.
Within a few months he took ill and was hospitalised before being moved to a specialist care home for people with dementia. It was not quite the outcome we had all hoped for but in the end, in this situation, it had become the best option. Perhaps if he’d had a link worker 6 years ago when he was first diagnosed things might have been different. I’m very glad that I got to know this fine gentleman and what most matters to him and I thank Tommy and Joan for their love story and how it kept me connected to what matters most.