Care for the Carer

The traditional image of carers is that they are tired worn down - living an unimaginably dull overloaded life; the imagery often used online and in the media  seems to back this up. Caring is hard, it is exhausting, it can be isolating – that is true, however it has much to teach ; I have found it to be an extraordinarily fulfilling pathway to truth, an adventure in love on all possible levels.

As I wrote a few years ago, as a carer : "You will become greater than you ever thought possible, because you really do have to reflect upon what is important to you in your life
and how to be empowered."

There are many times however I find myself hanging on by the slenderest of threads , not knowing how to bear another second. But we always come through !!

I am alive, growing, learning, learning more and more how to be real.

This is what I have learned :
  1. Look after yourself
  2. Be kind and affirm who you are.
  3. Be loving, especially to yourself.
  4. Learn all you can.
  5. Remain focused on the person- who they are and do not forget this even when illness seems to deny it.
  6. See the person but recognise their illness reality.
  7. Take space for yourself to heal your own wounds and losses.
  8. Keep fit - my bike is a godsend to me.
  9. Keep healthy by eating well - incredibly important - and exercising regularly if you can.
  10. Do things you like to do.
  11. Be together.
  12. Do not let systems or people be divisive or come between you.
  13. Do not “clientise” your loved one.
  14. Find ways of connecting as your essential selves.
  15. Express your emotions safely.
  16. Know all you know, in all you do.


Comments

Post a Comment

Popular posts from this blog

When I am 64 and other false positives : The PACE Trial.

Image
Greg Crowhurst 6 th February 2013 “Much of what we think we know based on conventional statistical studies published in the academic literature stands a good chance of just not being  so “  Roger Pielke Jr http://rogerpielkejr.blogspot.co.uk/2012/03/false-positive-science.html Imagine  I am a psychiatrist and for £5 million, say ,  I want to prove that CBT and GET are a safe and useful treatment  for ME. The good news is “ how unacceptably easy it is to accumulate (and report) statistically significant evidence for a false hypothesis ,  according to Nelson and  Simonsohn (2011).  Their frightening  paper “ False-Positive Psychology, ” shows  how  “ undisclosed flexibility in data collection and analysis allows presenting anything as significant ,” .  In fact Nelson and Simonshon statistically  “prove” that listening to “ When I am 64 ” by the Beatles can   make you a couple of years young...
Read more

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis

Image
Greg and Linda Crowhurst (August 8 th 2013). Synopsis Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom. This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not un...
Read more

DO NO HARM, DO NO BETRAYAL

Image
By Diane  I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly.   It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis.  To cut a long story short, it took a year to get a diagnosis durin...
Read more