Sunday, 11 February 2018

You want it darker.

If I am a parent, am I a carer? 

And if I am a carer, can I also just be a parent? 

 

And if I am a carer, is that because I order his prescriptions? I sterilise his medical equipment? I mix up his IV drugs, and administer them directly into his bloodstream? Or because I give him chest physio in the night when he can’t sleep for coughing? Because I stay with him when he is in hospital? Am I a carer because I nag him each day, until he has done all of his nebulisers and tablets and my throat is dry and aching? Or because we dedicate a quarter of our kitchen storage to his many medications, in which stock rotation is a full time job? Because I measure his temperature, his oxygen saturation levels and analyse the colour of his sputum? Am I a carer because I know the names of all his drugs, his medical team, the tests he has had, his list of diagnoses? Because I take him to every appointment? I capture his sputum and send it off to a lab to grow the bugs in a petri dish? Because when he has a PICC line, I need to wash his hair for him? .... 


.... Or am I a carer and not just a parent because one terrible month last year, he needed my help to simply get out of bed and into a wheelchair, his breathing was so impaired?

 

I watched this TED talk the other day. I do all the above, but I’ve never really considered myself a carer. I am just a Mum. Would I feel differently if he were so ill I couldn’t work? (I would be entitled to financial support for caring then). Or if it were my parent, my sister, my friend, my spouse and not my son who was unwell? Either which way; we should be celebrating every carer or caring person out there, supporting the less well in our society, because there are millions of us, and ultimately, caring for someone you love is a privilege fraught with sorrow. 

“82% of carers report feeling more stressed since they took on their caring role, with 61% facing depression.”
Isaac is doing OK: His problems with nausea and vomiting are declining; His chest sounds good; His pain better; The scar from his portacath op has healed beautifully - only his neck bothers him, where he can feel the line under the skin, tugging where is dives into the vein towards his heart; He will have his first flush in a couple of weeks, the line will need this every 4-6 weeks to keep it working (to see a video showing a port being accessed click here.); He is busy choosing the subjects he wants to take for his GCSEs, but as his attendance is so poor, his choices are limited (damn CF); But he is regaining the fitness he lost in October (through football and CrossFit) and for now, we are home and thankful. 

Everyone with CF deserves the chance of a longer, healthier life. Please support our skydiving fundraising by clicking here. x