A open letter from Julie Glover, whose Mum is a resident of Oakwell Care Home, Bickington, North Devon.
“My Mum is a resident at Oakwell, in Bickington. She has latter stage Alzheimer’s Dementia and is living out the end of her life. She is an older person who has worked hard all her life and that should mean something. Whilst I appreciate Councils’ need to save money, is this really the right area to focus on? In a report commissioned by UNISON, findings suggested that whilst financial savings may be made they would be marginal and needed to be balanced against risks involved moving to private providers. The Association of Public Service Excellence, 2014, concluded that the Council should rethink its strategy and not pull out altogether. They acknowledged the challenges faced regarding spending reductions and changes in demand and the move towards prevention and enablement, but raised concerns with the suggested proposals for current service users. Concerns were that choice would be reduced rather than enhanced and some people would be left to ‘fall through the gaps’.
I, unfortunately, no longer live in North Devon, but my Mum does. Whilst she no longer has a voice, I do. I have Power of Attorney and I speak for her. I am sending this in the hope you will be able to offer support and put across our situation at the forthcoming ‘People’s Scrutiny Committee’ meeting taking place at County Hall in Exeter at 2pm on Thursday. I had hoped to be there but am aware it is not an option for the public to attend.
When the Council first started the consultation meetings earlier this year neither my brother nor myself were informed of what was happening. We received no communication whatsoever of the Council’s intentions.
We only found out when we visited and saw the protest boards. Unfortunately by this time we had missed the meetings regarding Residential Care proposals.
My Mum has been fortunate, until now, to be a resident, actually more a member of the family, at Oakwell.
We have already had medical advice that she may not cope with a move.
Dementia is a terrifying concept for a family to deal with. We were fortunate to be able to utilise all of Oakwell’s outstanding services.
My Mum participated in the activities at the day centre from June 2007, whilst this gave my dad some time on his own to catch his breath, it also offered Mum quality time, with specialist activities designed to keep her mentally stimulated.
When Dad became ill, the respite care was a haven for Mum during his many hospital visits, from March 2009.
It was, for our family, not the devastating acceptance that we needed to consider a home for Mum, but a natural progression. By the very nature of how Oakwell operates, we didn’t have all the tears and trauma when Mum became a resident.
She was already familiar with the staff, the routine and the surroundings. I had hoped she would live out the remainder of her days here.
The staff don’t see her as someone unable to communicate verbally, they see her how she was.
They recognise all of her nuances and instantly know what she needs.
Whilst by many it would be seen that she lacks quality of life, indeed I may have been one of them once, she has fought to live.
Everyone at Oakwell ensures that whilst all of her care needs are fulfilled so too are her emotional needs.
Little things matter to them, colourful mobiles, bought by staff members themselves, hanging in her room, catching the light, maintaining what little sight she may have
and music ringing through the room, with Mum, singing her own version. Although unable to walk now, they still ensure that she enjoys a cream tea outside on a sunny day.
I apologise if this has become a personal ramble but this is my story of Dementia with my Mum and if I don’t speak up for her and the many others like her then who will?
Evidence from the Alzheimer’s Society, 2009 suggests that moving a person with dementia from a familiar environment during late stages of the illness can cause distress and difficulties. The Department of Health, 2008 recommends that end of life dementia sufferers should be able to be cared for and ‘die in a place that they would choose.’
For my Mum, it is now, the routine of Oakwell; the fragrance of the fabric softener on her clothes, the feel of the mattress on her bed, the way the light streams through her window and the sound of the voices of the staff.
You cannot replicate this.
We were the lucky ones, until now, because we had everyone at Oakwell supporting all of us through our journey.
My heart goes out to everyone in Devon who is, or will be in the future, touched by dementia. This is not a sad day, it is a tragedy.
I cannot stress strongly enough the difference the staff at Oakwell have made, not only to my Mum, but also to the lives of all our family. The care given at Oakwell would be better utilised as a blueprint for the future rather than being closed down. The Dementia Council specified as one of the key priorities noted in its Statement of Purpose was Health and Care, specifically promoting innovative care and making it available for all those who suffer and their families (DH, 2014).
Finally, in the words of Jeremy Hunt, Secretary of State for Health, England ….. ‘the real reason to do something about dementia is not financial. The real reason is human. Everyone deserves to live their final years with dignity, respect and the support of loved ones’……….
………..My mum deserves this.”
We’d like to note that when this letter was read out by Cllr Frank Biederman to the Scrutiny Committee Meeting called to examine the closure decision, it was given no more attention by the councillors supporting closure than if Julie was asking for a new road sign.
Julie also quotes from the Prime Minister:
“One of the greatest challenges of our time is what I’d call the quiet crisis, one that steals lives and tears at the hearts of families, back against this disease; one that cuts across society.”
Prime Minister David Cameron, speaking at the Alzheimer’s Society Conference, March 2012
Whilst it is fantastic to see the future targets set by the G8 Summit to fight dementia and even try to find a cure, I was delighted to see that David Cameron still recognised this won’t help those already suffering. His message was clear “The first thing we have to do is to help those living with dementia to live with dignity”. His words regarding families resonated with myself and I’m sure many others.
“Just think of the families enduring the unspeakable pain of watching loved ones slipping away, husbands and wives, sons and daughters finding that their loved ones no longer even recognise them. For far too long this terrible condition has been ignored, down-played or mistaken as a natural part of the ageing process.” Prime Minister’s Office, 2014, Department of Health, 2014