Yes I have been a carer, many more times then I wish I had. Now you will be judging me, thinking “How awful for her to say that, does she not have feeling or compassion?”
Well come to what conclusions you wish, for I know I did the best I could during those times. Unless you’ve walked in my shoes, experienced what I have, ridden the emotional rollercoaster I have lived, you have no right.
Let me give you some insight into caring, into providing 24 hours care to someone who you love during a terminal illness. Easy you say? Actually, if you think that then you certainly need to keep reading.
Lets take a walk back in time, back to the year 1994…Christmas time.
This year I had a great gift, my father was diagnosed with lung cancer. Think a minute on the implications of this announcement at this time of year. Just for a minute try and actually feel the full range of emotions from sadness, devastation, loss, grief, hopelessness…great Christmas gift huh?
So now we have a family in an emotional mess, knowing full well that there is no cure for cancer, knowing that lung cancer has one of the highest death rates of all cancers, knowing we were on borrowed time.
With both my mother and I being nurses, we looked after my father at home where he died in 1995, not even 12 months post diagnosis.
Yes he did the radiotherapy, we suffered as much as he did, we suffered his temper, his frustration and his pain 24 hours a day. Plus having to grieve. Yes, when someone you love is diagnosed with a terminal illness the grieving process begins immediately; inevitably life as you know it is on borrowed time, you know that you will lose that person regardless.
Turn the clock forward to 2005, history has a bad habit of repeating…
Yes, once again it’s Christmas. Yet another wonderful gift, my mother is diagnosed with Multiple Myeloma, yes, cancer , this time a blood cancer which affects the blood marrows ability to maintain blood cell production. This time I’m alone, I know there is no cure, I know I will lose Mum, it’s just a matter of time.Once again good old grief kicks in, but this time I am faced with being the sole carer, the only one who will provide the care to my Mum 24 hours a day 7 days a week. Caring has far greater implications then just attending to the everyday needs of the physical, it also incorporates the emotional, the psychological, the spiritual.
Stop and think for a minute how you would feel if you had to listen to someone you love beg every day for you to let them die. You are already in a constant anxiety state, constantly fear “Is today going to be the day?” do you truly know what it’s like to fear the phone ringing when you’re at work, fear because just perhaps your loved one has passed. Do you know how it feels to wake up every morning and wonder if you’re going to find your loved one dead in their bed?
Besides that, you’re already severely sleep deprived because your loved one needs something, needs medical assistance or needs comfort all through the night. Exhaustion becomes your greatest friend, friend because it’s with you all the time.
No, I didn’t always have the greatest amount of patience with my mother, we had some horrific arguments and no she was not always easy to deal with as her illness progressed, in fact our arguments used to end with her saying “you want me dead”. As if I was not going through enough pain and grief.You see people who are terminal also experience many stages on an emotional level, stages us carers find it difficult to deal with, stages that scare us.
Even being a registered nurse, a trained health professional, you could say well you have the training and knowledge to cope with this. Hello, this is my mum, not some patient I do not know from a bar of soap. Bottom line is I had a hard job dealing with my own grief, pain and exhaustion and then lump on top of that the pressure of not knowing, the need to provide care for all aspects of her being, not a conducive mix to staying healthy and alive.
Again lets move forward to 2007…the end of July.
Mum was officially in remission,she was feeling great and beginning to live again, we both were, things were looking great, we’d planned our future, set some common goals, I could actually shake off the feeling of being in constant limbo and feel like I had a future. Yes, when being a fulltime carer 24/7, you are in limbo, you cannot plan, cannot hope to dream because you know that at any time these can be easily shattered.
Mum got a virus, developed into pneumonia, the extensive chemotherapy and the stem cell transplant had diminished her immune system to zero, leaving her highly susceptible to anything.
Within 5 days I was sitting in intensive care with the head medical practitioner explaining to me why I needed to turn off the life support which kept my mother breathing. Total organ failure. The only thing that was keeping her alive was a machine, the only fully functional organ left was her brain.
Well, I’ll leave you to imagine what that was like, imagine because unless you’ve been there one that you really would not know…
And know I ask who will care for the carers? Does anyone?
© 2008J Picken