Three days with mum, the last culminating in a meeting with the social worker to review her package of care. Being a distant carer is frustrating, isolating but important. Being a voice for those lacking strength and system knowledge, exhausted by the effort of loving without praise, rest or reciprocal feedback is an essential role.
What I see as a distant relative is different from the lives my parents are actually living. I want to help, to ease the pain and burden and wonder daily at how this 78 year old man manages when it takes three of us to transfer from bed to chair. The regular falls and the increasing anxiety that people with dementia often experience results in a fear of falling. I wonder how he manages and keeps well enough to continue in his role of husband, friend and carer. But then I also see a woman who is terrified, leaning on the arm and chest of the man who's loved her all his life, who shared pencils with her at school, sheltered her from the rain and travelled the World together. The effort of caring and the times that are worst are from Dads perspective ,the occasions where she falls or he cant get to her in time to maintain her dignity. But he doesn’t want to relinquish his role in caring as these times are also now the only occasions that he can hold her in her arms and actually have physical contact.
Now sleeping in a Hospital bed at night, in a Buxton Chair during the day, - the sitting together --mum protected by his love and engulfed by his arms have gone and the only time left for closeness is in caring duties. No wonder that, despite our concerns for his health, he doesn't want to even discuss nursing homes. The house can be dirty and so my frequent visits are now engaged in cleaning as well as caring, but it's worth it to see them at home together, where they belong. As long as he wants to do this, we have to honour and enable that, despite the fears that he isn't really, coping. But we also have to shout for their rights and abdicate for them as it can feel as if society really doesn't see, hear or care about the thousands of people barely coping at home. As long as it's cost effective and minimal they can walk out the door and tick a box! In an unsustainable economy we simply have to think and behave differently if we are to protect those people who made us and society what we are today.
My personal experience and fortunate upbringing has enabled me to progress all aspects of my role but in particular my passion for dementia with vigour and enthusiasm. I believe that experience makes us better at understanding the reality of caring and in working in true partnership, as equals with those who are receiving services will result in a better service.
My personal experience has shaped my belief system and commitment to patients and I draw on this every day as I strive to lead a quality and patient focussed organisation. My next BLOG will describe the FN project and progress with it in more detail and I hope show how it is making a positive difference to those in receipt of care.
A rose in the morning surrounded by the sheen and sparkle of dew. As the sun peeps out and smiles, the petals turn bright and vibrant. How difficult then when the sun stops shining and the sparkle becomes like a cataract- discoloured and stubborn. Underneath and within is the young blossom still, bringing joy and colour to the World around it .Don't pull the petals off, watching them fall to the ground where they wither and die or become embedded in the soles of shoes. Rather keep a gentle watch, take joy in the changes in light and shade, the ability to still sparkle at times and the vulnerability of time.
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