Quit now and ignore it all right?
That list is impossible.
Well, managing caring is trade-offs, but a with some work, trial and error, you can keep your priorities straight.
When Matthew came along, I was running a fledgling bookkeeping practice, from home. I had started it so I didn’t have to go back and work admin in construction.
I wanted to be there for kids, not have them in daycare from 6am to 6pm.
In truth, Matthew put Shane and later Mackenzie in more daycare than I intended. It was reality, trading one priority for another, sometimes for life and death emergencies.
Luke has worked the same job since Shane was born. Small changes, same company. Except for a brief 6 weeks, where he tried something different.
The roll he has is shift work – day shifts, 5.30am, 7am & 9am – for 11 hours.
It’s supposed to be 7 days a fortnight, but with a shortage of supervisors it can be 12 a fortnight.
It’s a huge workload, which often leaves his days off as recovery days.
Why am I telling you all this?
I am setting the scene. Matthew spent 50% of his life in hospital. We could never predict when he would need to go back.
One night Luke headed to bed – he was barely able to function. Matthew started having symptoms of gastro, Shane may have had it before this.
Now Matthew and vomiting is a VERY bad thing. We know at this point that Matthew’s low tone meant he had serious issues protecting his airway.
He often landed in hospital from swallowing his own saliva and mucous in his lungs. Vomit was super high risk for him.
Mackenzie was less than 12 months old and still 100% breastfed.
I bundled the two of them into the car and headed towards the hospital.
Then Mackenzie started vomiting all over herself.
I’ll say one thing for Matthew vomiting.
It didn’t spread! He didn’t squirm around or get it every where.
It was all over her car seat, all over her.
Now I’m outside ED.
How do you get a vomiting baby and disabled 2 or 3 year old inside without making a huge mess or endangering a child at risk of choking?
Answer: I don’t know, I’ve block it out!
I remember stripping off the car seat at some point and putting all the parts into a garbage bag so it wasn’t brewing in the car.
Juggling is a huge skill as a mum and even more of you add the responsibility of caring for a medically fragile child.
I began to create a list of priorities over time.
On nights I was home with Shane and Mackenzie, Luke was in the hospital. He needed to be at work before 7am so he couldn’t do school and daycare runs.
The minimum amount of housework that could be done in a week to keep the household from imploding.
Those mornings, I would do the dishwasher and a load of washing in the machine and one in the dryer. Over time we delegated the dishwasher to Shane. But with these two jobs done each day, at least we had some clean dishes and clean clothes to wear.
Bed sheets and floors had to wait until Matthew was home from the hospital. I couldn’t take the time away from the hospital. From his precious moments of life. He also needed a translator to communicate, as he was non-verbal and his motor skills and hypotonia was so severe that he couldn’t use sign.
Toilets, I’d probably in an evening that I noticed that it needed doing.
Cleaning the shower? Well let’s not talk to much about that. 🙂
I would encourage anyone to consider a cleaner.
It was the one thing NDIS did for us, which I would encourage anyone to consider even without it – a cleaner.
$50 a fortnight for bathrooms and floors. Our lady was also a brilliant organiser too. My desk and benches never looked so clutter free.
I used our funding from ‘Support for Informal Supports’ to pay the cleaner. When I calculated it, you get way better value for money paying someone $25 an hour and spending that time with Matthew. I could pay a carer but that would be $50 an hour and still not be able to get the jobs all done in that time.
Where ever possible, I got carers to wash all the equipment while Matthew was resting.
Delegating tasks, minimising my ‘must do’ jobs and excepting help.
Is an absolute key to this. You cannot do it all yourself. If you can’t ask for help, I would take a pause to examine what is going on with me.
What is going to happen if you ask for help?
I’ll tell you. Most probably you will be a better carer!
You will be more attentive to the details of the tasks you are completing, & you will get more quality time with your loved ones.
I used family help to enable me to continue my casual job that was 3 hours a week, as a minimum , some weekends. Some time away overnights, but not often while Matthew was around.
I trained my sister on all of Matthew’s cares and equipment and she took to it like a duck to water. In the end she was the only person we could leave Matthew with safely overnight.
As well as my casual 3 hours a week I continued to run my own business.
I worked the 3 hour job to get away, talked to real people.
Early on ECIS worker suggested to me every time I saw her, that I should be selling my business. I had our worker changed. We knew by then that Matthew’s problems weren’t just going to go away, so it would be short sighted to give up my business.
I did sell my bookkeeping practice though, a year or two later.
For a long time I brought all my work with me into the hospital, even my printer. I would set up on the desk in Matthew’s room and not move.
As Matthew’s list of teams grew, the interruptions and interventions increased overtime. Matthew’s care often required attention every few minutes, not giving me the solid hours of work I was once able to complete.
So Luke and I started working a business that I could run from an app on my phone. We had video meetings and communicated with our team all over the world online and one the phone. I could work for short bursts and still see results.
Partnership with the company we worked with supported us in the purchase of the vehicle Matthew would need. It was a beautiful car that would be able to be converted for wheelchair access.
Another priority was family time.
Seeing the kids and all being in the same place together.
Luke and alternated nights at the hospital sometimes, if the days lined up, it would result in one of us not being home for 6 nights. Then not sleeping under the same roof for a couple of weeks at a time.
Now I know plenty of families who have it worse but I can only share my experience.
Sometimes after a day at the hospital, while the kids stayed at home with Luke to do normal things with their dad, I would come home for dinner. We would sit at the dinner table together then, I would do the evening with them, and put them to bed.
Heading back to hospital afterwards.
This was only possible because we had relocated for better access to the Children’s Hospital.
Nights that Luke was staying at the hospital, I would try to organise dinner there. If someone brought us a dinner that was fabulous, but that was never predictable.
We cooked at the hospital.
So I came up with a list of meals that we could put together. We kept these meals to minimum ingredients and they had to be cooked in a microwave or on a BBQ.
This allowed us all to sit down together before I took Shane and Mackenzie home for bed. Then I did it all again the next day.
Once at home concentrating on the minimums, and getting to bed early enough to take advantage of the hours before midnight.
Getting enough sleep.
I don’t know if it was stress or anxiety but I have always been one of those people who needs 8 hours or more of sleep. So caring for myself meant aiming for that. With hospital time and emergencies that could be very difficult so I relied heavily on what I talked about in One life saving step, to get me by.
But I also used writing in my journal and reading to help me wind down at night. On night that I didn’t go to sleep as soon as my head hit the pillow.