16 Ways To Support Carers & Families In Crisis

16 Ways To Support Carers & Families In Crisis

What is it that carers need when they are in crisis? TO BE HEARD | TO BE SEEN | TO BE HELD A few days ago I needed to go to the hospital, an hour away, to collect medicines and drop “samples” off for testing. Normally I would have had spare supplies at home, but with my son’s admission last week being cancelled I was left a little behind the 8 ball… unusual these days but of course I am human. It took longer than expected, but I was pleased to have been granted time to listen to a few podcasts, have a conversation on the phone with my mum, have a cuppa and some breathing space… As I finally walked out of the hospital and back to my car, my name was called out by a gentleman on a phone who I did not recognise. He definitely knew me. He rapidly hung up the phone, introduced himself as “X’s Dad” and the penny dropped. He is his child’s full-time caregiver. This is a man in my private Facebook community, Carers Connect.  I had met him briefly by chance at a local fundraiser for a prominent member of my local community. I stopped and sat down with him and asked how they were all going (son is 15, same age as my boy). He recognised me from the box I was carrying – his son had been on similar medications over the past couple of weeks.  I was shocked however to find out his son had a cardiac arrest just 4 days earlier.  He was in the ICU, he fell and...
A day in the life of a carer . . .

A day in the life of a carer . . .

She sits down to her computer at 7.45 pm, without knowing how long she has, she gets straight to work.  It seems like a day where she has achieved nothing in her “busy-ness”. Feeling satisfied yet exhausted, she slipped into bed at 12.30 am of the same morning, after administering the third and final intravenous (IV) antibiotic for the day to her chronically ill son.  Up until midnight, she had been supporting a couple of vulnerable carers online going through their own tough times. She woke briefly at 5.20 and ensured her husband had what he needed for his day at work. She dozed back off for a few more minutes of sleep. This is a typical day of a carer.  A carer, who at the moment, has a more intensive care regime for her son, who is undergoing intensive IV antibiotic and physiotherapy treatment.  He has Cystic Fibrosis.  They are two weeks into the treatment of a potential four week regime. A week ago they were fortunate to have the choice to take the boy home and administer this treatment from there. The family can then remain together. Hospital treatment means the family are separated for long periods at a time. Beep, beep, beep – the piercing sound of the alarm startles her yet just as swiftly it is put onto snooze – she steals another 10 more valuable minutes.  Eventually she rises just before 7 am and tries to wake the children on her way down to the kitchen.  The kettle boils in the background as she gets to work on preparing the IV medications. Today her youngest child is focussed...
The simple gift of giving

The simple gift of giving

Do you get to this time of year and wonder how on earth you can help your friend or family member who is doing it tough?  Perhaps you care so deeply but just don’t know how you can help them or make a difference?  You know you can’t change their circumstances but if there was only a way you can make their days just a bit easier….. THERE IS! For many of us Christmas signifies the time of year where we get to take a “break” from our job, even if it is only for a couple of days.  We take the opportunity to cast our mind back over the year that was and set new intentions, hopes and dreams for the year to come. While it is a beautiful time where we come together and celebrate, for caregivers and those who experience extreme grief and loss at this time of year, it is impossible to get into the spirit. There is simply NO relief in sight.  No real ‘new beginnings’, just more of the same.  Responsibility levels do not change,  often needs increase.  Emotions are run high and it can be a stark reminder of what they are missing, not what they have! WE HAVE THE POWER TO CHANGE THIS! Over the years I have spoken to many people and recently I surveyed people to find out exactly what would make a difference to them in their toughest times.  Here are the top 5  ways you can help out those doing it tough during holidays and every day: VISIBILITY & VOICE People simply want to be heard and...
Harsh lessons for my chronically ill son

Harsh lessons for my chronically ill son

It is no surprise to me that my son who is now approaching 15, over the past few months, has been resisting his medications, treatments and physiotherapy that keep him well and maintain his baseline health for Cystic Fibrosis. What is surprising is that it has taken until nearly 15 years of age for him to do it.  I figure that some of the social delays he has, have contributed to this.  But he is most certainly in his teens, physically and mentally.  He is incredibly strong willed and stubborn.  When he has made up his mind about something, there is not a whole lot you can do to change his perspective. When my boys were young and as I was bringing them up, I tried hard to teach them to listen to what their body was telling them and to adjust their behaviour accordingly.  Sore tummies or headaches, and anything in between, always followed with a discussion about what led up to the event or the symptom.  Trying to identify the trigger. What I was trying to do was gift them self-awareness.  I knew from being a teen myself and reading literature about teens with Cystic Fibrosis (and chronic illness in general) that the teen years were going to be tough.  Especially for Matthew dealing with CF. My theory was to teach them to understand that the things we do, the food we eat, the drinks we consume and the environment in which we live can significantly affect how we feel and how our body performs.  By doing this, I hoped, no I trusted that they would grow...
“Some days I don’t know how you do it”

“Some days I don’t know how you do it”

My friend sent me a message last week with the words “Some days I don’t know how you do it”.  She often see’s us going through our own ups and downs with the mental and physical health of my son’s.  She saw on Monday that after my son’s 3 week hospital admission, there was little improvement to his health status. My friend, however, is going through an incredibly tough and confronting time herself. The whole family is and has been for many years with her having to face her own serious health battles too. Right now they are facing serious health issues for one of their children and are having to make decisions that will potentially affect the rest of their child’s quality of life. The fact of the matter is, that she is trying to be strong for everyone but is on the verge of cracking herself. Not only is she trying to hold her family together during their own difficult times, she is dealing with grief and uncertainty around the health of one of her friends, who is terminally ill. How do I respond?  We all have our different stuff don’t we?  Differing levels of resilience from person to person and environmental factors can change our ability to cope at any given time.  So my response: “Well I guess I figure all the worry and stress really doesn’t help me or anyone else. In fact, for me it makes it worse. I can’t think clearly, can’t function properly and I sure as hell can’t make decisions effectively. I guess I have practiced it (coping) over a long, long time. Monday, I...