Back at the start of D4Dementia I wrote about the importance of continuity of care for people with dementia. It cannot be over-emphasised just how beneficial this is, not only to the person living with dementia, but also their families and indeed people working as carers. The chance to form a bond with a person is what can give the greatest job satisfaction and leads, in turn, to the most compassionate and personalised care.
We were particularly lucky that my father formed a bond with a carer that lasted from the day they met to the day dad died – indeed this man even came to dad’s funeral. In the almost eight years in between, this carer brought such joy to my father’s life that it could honestly be said that dad was often more pleased to see him than he was any of us.
As a family we valued this carer’s input into dad’s life higher than any other professional we worked with, so imagine our heartbreak when a change in ownership and management at dad’s nursing home resulted in wholesale changes to the care structure. Suddenly wonderful staff who had delivered an excellent CQC report just a few months previously were now leaving, bullied, ostracised and driven away, initially we suspected for racial reasons before it became clear that whatever your skin colour or race, if you were well-liked you were not wanted.
What you soon discover as a relative, when you try to halt this tide of change, is that A) private companies can run care homes as a dictatorship rather than a democracy so long as they can keep the inspectorate happy, and B) that as a relative you have no say over what happens, CQC are reluctant to support you, and the only real option you have is to move your relative to another home.
In this case, having no say included having care plans made for my father without any consultation with or agreement from us, carers who knew my dad being forced to implement care plans that went directly against what they, and us, knew to be in dad’s best interests, and no care review for a year. Ultimately this led to a chain of events that resulted in my father being admitted to hospital with pressure sores and a catastrophic aspiration pneumonia that would eventually kill him.
You cannot force intransigent managment to answer your questions, you cannot change the dictates on your relative’s care, even though you know your loved one better than anyone else, and when you turn to CQC for help, you are left very disillusioned by the incredibly slow response, lack of transparency in their actions, and that fundamentally they seem very unmoved by so many vulnerable elderly people being at risk.
Add to this the loss of care staff who you have known since the day your relative moved into the care home, and whose work and reputation you would defend as both a relative of someone in their care and also as their friend, and you have a situation where you feel utterly helpless. No matter how many times you mull it over in your mind, you will never find a resolution to the fundamental question of why people with no knowledge or understanding of dementia, no concept of compassion or indeed a caring bone in their body, would wish to run a care home where the most vulnerable, sensitive and highly dependent amongst our cherished elderly live.
To see what had been such a happy home, where relatives, residents, staff and management worked together, pulled apart within a matter of weeks is something I will never forget. Not only did my dad lose the continuity of care that had added immeasurable quality and richness to his life over all those years, our time with him was blighted for weeks by on-going arguments, upset and disharmony. We lost friends, happiness and actually, in the end, dreaded visiting.
Having a loved one in a care home is hard enough for any family, but it is the bonds you form with staff, and the joy and comfort you see them bring to your relative, that make it bearable. There is no price you can put on that, and no agency that you wouldn’t beg for help to try and halt the tide of catastrophe. Tragically, having persevered with trying to change a situation we clearly could never change, we had actively begun to seek a new home for dad when, on that fateful night in March 2012, he aspirated on his own vomit five times, setting up a pneumonia that his body just could not fight off.
My advice to anyone going into the caring profession, be it as a carer, nurse or in a management role, would be don’t do it unless you can care about others as much as you do your own flesh and blood. If you are a manager, don’t be a dictator, don’t treat residents as a commodity, and don’t make the lives of their families unbearably hard. When staff are loved by residents and relatives it is for a reason; we know how hard it is to find these wonderful people, and how special they are, so listen to us. Finally, above all else, remember this: care homes are for caring, prisons are for punishment.
Until next time…