Thursday 23 November 2017

How We Go From Competent Caregiver to 'Family From Hell'

Last week an article circulated among my caregiver friends called Ask the Expert: Managing the Relative From Hell.  This shocking 'advice' column for care home professionals who struggle with worried visiting relatives includes snippets such as, "You’ve all had one!  Turns up at antisocial hours, interferes in care, upsets the staff, makes constant complaints without basis, instructs care changes against professional advice" followed by the righteous, "It is your home.  You have the right to control who comes, who goes and how they behave." And the penultimate zinger: "THE VISITOR…has effectively no rights, particularly if their conduct is unacceptable. The expression “next of kin” has no meaning and carries no rights."

The article was so egregious, it provoked a flurry of excoriating responses from families and care providers alike. Like this from a reader called Jools, "Utterly shocking. You don’t seem to grasp that it is the resident’s home, not the provider’s. Neither do you grasp that you need to be working WITH relatives, no matter if they present as ‘difficult’. Difficult usually means ‘worried to death’ that the person they love – and know much better than you ever can – is totally dependent on the care of strangers."

Fuming after reading this 'advice' column, I did a google search for more of the same (I'm like that when I get mad). I found a blog post by two disability Moms from the UK titled Difficult Families?  They got angry and wrote about it when they saw an employment advertisement for children's services workers who had experience working with 'difficult families'. So, here's their definition of difficult families - all caregivers insert your loved one's descriptor in place of 'child' or 'children' because this description fits every one of us. 

“Difficult families” is a lazy and disrespectful way of describing families who are:
  • Desperate for their child and family to have a decent life
  • scared of what the future may hold
  • frustrated by a lack of support for their child’s education, health or care
  • angered by abuse
  • intimidated by ‘professionals’
  • bewildered by the system
  • infuriated by not being believed and taken seriously
  • exhausted by lack of sleep
  • living with uncertainty about their child’s health
  • struggling to understand how to meet their child’s need
  • worried about how they will pay the bills
  • physically broken by the 24/7 care and lifting they give
  • lonely and isolated because there is nothing left for friends and relationships
  • low on patience because things have gone wrong so many times
  • experiencing daily hate crime from neighbours
  • racked with guilt about whether they are doing enough for their children, whether they have failed them
All this talk of difficult families got me thinking just how, when the going gets the toughest, we are demonized by those working for systems that cannot meet our escalating needs.  The worst case scenario is being on a waiting list for another level of care, or for more help at home. The situation escalates, but the system is maxed out, the waiting list bottled-necked. At home, the situation becomes dangerously unstable and sometimes even life threatening. We become...'difficult'. And that's when we are called 'families from hell' at the worst. At the least, we are labeled as 'not coping', 'aggressive to agency staff', or in the case of children's care, 'incompetent parents' (because our children's needs are too high). I have been on the receiving end of all these descriptors and most other caregivers I know whose loved ones have very high needs have too. 

I have also known the gifts, talents and the kindness of care professionals who have dried my tears, held my hand and then got to work WITH me to make my loved one's suffering less. These are the heroes of our care systems. 

If you hear talk about US vs THEM in care circles, call it out. Shut it down. Use the language of teamwork and of compassion. Use a rights-based argument if those don't work. But don't allow the demonization of family caregivers to be the normal response of an over-taxed system. 

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