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 on his camp and excitement fills the air, he needs to be ready early! Drug levels need to be done and timed meticulously. Within the hour of 8 am to 9 am, she needs to administer the second lot of IV’s for the morning, pack the car, deliver her younger son to school ready for camp and get to a pathology collection centre that will do “finger prick” blood tests for children. These are few and far between but necessary for her son whose veins are “shy” after having been accessed so many times in his short life. Today she is grateful that the hospital send’s a physio therapist to do her son’s first treatment and that on Thursday she had the foresight to bulk prepare an entire week’s worth of IV medications essentially saving her hours. The Physio will arrive at 10 am, most days this would be done by her at 7 am.
In stealth like mode she has her youngest child ready for camp, has the children fed, IV’s administered, ‘drank’ all her morning cuppa, had the car packed and she is out by 8.05 am with youngest son delivered to school within 15 minutes. How does this happen when on a “normal day” they are typically running late and only getting in the car at close to 8.30 am? She is proud. Her children happy. Today is good. Today there is no stress. This is a win. She briefly laments that she missed out on waiving the school bus good bye as her baby goes off for a fun filled week but is happy he gets to have fun. It is times like this that he truly struggles as a sibling of a child with special needs.
Specimen collection happened smoothly, they were home by 9.30 am ready to start the day. Morning physio therapy was followed by some schooling “motivation” and coaching with her son, she tried to claw onto doing some “work” …. Yes, this woman works. She works for herself, she is building a business supporting other carers in the community far and wide. She completes a few loads of washing; her house is not as clean as she would like but she has learned to let that go for now.
In amongst lunch, another physio session that she does, more IV medications, another blood test and dinner preparation, she fits in bits and pieces of work and has created a beautiful new product for her audience. She notices that a “regular” within her Facebook Community has disappeared from Facebook, not just from her group but totally off line. It is out of character and she is worried. This person is vulnerable, reaching out she is eventually put at ease knowing the wellbeing of this person is intact. At the same time, she speaks with a friend interstate who is doing it tough. Dealing with the confronting diagnosis of her youngest child coupled with a marriage separation…she too has been in those shoes.
The giving does not stop…
In trying to create space she cooks a roast knowing this will be the meal that keeps on giving. It will feed her family numerous times over during the week. Yes, she has created some space and ease. It is served up as a yiros meal with wraps and salads… Her husband falls asleep and misses dinner, just after she has finished cleaning up he wakes. She fixes him his meal – he has been hard at work and she loves to nurture him. He would do anything for her and the children, and he is.
This person is me, Cassie. It is now 8.30 pm and I am about to go and complete my son’s third physio for the day. It will go for 30 minutes, he will do another nebulised medication, have additional medicines for me to supervise and I am sure will rope me into playing a game or watching some TV for giggles. How could I resist? Today was eased by the fact I didn’t have to collect my youngest son from school. It is quiet here. I will be awake for another near 4 hours to do midnight IVs and then it will start over.
Yes, tomorrow is a new day. It will look different. We have a hospital appointment where the fate of the coming weeks will yet again be determined. I will worry about that tomorrow afternoon. Right now, I am off to enjoy my boy and am planning to contact my friend to confirm our regular 6 am walk.
Why I hear you ask? Perhaps you think I am crazy. The simple thing is, I need the exercise for my head and my heart. It is the little pill that keeps me going…. AND I need the connection with my friend, so I too can share and off load what has been happening for me.
I will be off at 6 am to fill up MY cup!
Note: This isn’t every day, it is more days than not while undertaking Hospital In the Home (HITH) treatment. We are so grateful to have the opportunity to do this. For us, having our family together is everything. The toll separation, chronic illness and disability has on siblings cannot be under estimated. Mental health is everything. x
Are you a carer that is tired and feeling “beyond” run down? Perhaps there is someone you know that fits the description?
Please accept with my compliments my introductory guide to avoiding exhaustion and burnout…. There are so many factors that contribute to exhaustion, burnout and overwhelm but I am here to help.
You also find authentic and positive support in my online Facebook Community, Carers Connect. You can join anytime, it is free without obligation.