Carers are my Lifeline

I use to cope with no worries without a carer on a daily basis. I’d get through until they came again, usually 4 hours on the weekend. During this time, I would catch up on household chores and a few moments to be with the boys. Abbey was 2 years old.

Now we can receive up to 18 hours a week. But we must choose between equipment or a carer for Abbey. This year we chose a carer, but I’m hoping no equipment will be needed.

Over the last 10 years Abbey’s caring needs have increased, dramatically. Now she needs both equipment and a carer to obtain the most out of life.

This past week, my girl has been ill, again. And we have been without her best friend and carer. There have been drug changes, sickness, doctor appointments, paperwork and a host of other needs that centre around Abbey. As we move forward, I’m learning to accept I cannot do it all. That I need support, to ensure she has the best quality of life. Someone attentive to her needs while I navigate the medical system, care for the family, laugh with the boys and care for myself.

Several times this week the boys have asked if her carer is coming. They feel the changes when there is no support so we work harder to ensure they don’t miss out on our presence.

Even though it’s been a very long week, I’m happy that I accept that I cannot do it all, and it’s not a form of weakness or failure. This is way bigger than my abilities as a Mum. It has taken a long time to accept and be comfortable with it.

Now I’m longing for the return of Abbeys carer. For the joy it brings her and the freedom it brings me.

A bittersweet day

Today we say goodbye to Abbey’s best friend; our carer for Abbey. A very special lady who has empowered our family to be more and do more.

Madi has been with us for 4 years. This may seem a short time but for our family it’s a lifetime. Madi has joined us in the journey for Abbey from great hopes into our palliative care roles.

Madi has been Abbey’s best friend, joining us for weekly movie nights, family dinners and cooking up a storm in the kitchen. She has helped Abbey join in these family events, but most importantly she has allowed us – James, me and the boys – to engage with Abbey as her Mum, Dad or brother, trusting the carer aspects to another.

Madi moves onto bigger and better adventures, and though I personally will miss her presence in my day to day, I have gained a very close friend. Someone who has a very unique perspective on my life. She has seen me cry, get angry, be at a loss for words and be so extremely happy, and supported me through all of it. It will be wonderful not to be her friendly employer anymore, but rather her friend, in full.

Today we lose our carer, but retain a member of our family.

Thank you, Madi. From all of us.

When will the paperwork end?

In January to early February I filled in over 50 forms equating to about 150 pages of paperwork related to the needs of Abbey. Yes, I kept a tally for about 30 days, just to see why I get upset.

We all hate paperwork, but a lot of it is frivolous due to internal policies and procedures of government or businesses in the disability sector.

This doozy is a form we need to fill in to allow teachers to administer medication at school. Perfect and extremely important for regular medications. Things can change quickly though, and this is when it tests procedures.

Abigail had stopped taking this medication, ahead of schedule while at Hummingbird House. To ensure it would not be administered at school, this form had to be filled in again and signed, advising not to administer. All to be done before the dose due at 12pm. Lucky I was home or Abbey would have been medicated.

I understand the need to cover bums for legal issues. I did it with a smile on my face and laughing at the situation, but one snide remark that this is silly.

I wish it was easier. I wish that carers did not need to run around printing forms to sign for nothing to happen … to photo and email back to prevent a course of action that would disrupt our children, all before a deadline.

A note in a communication book and via a phone call should be enough. And maybe it’s not enough.

All organisations who interact with carers or parents should have procedures in place that minimise the unneeded stresses to carers due to frivolous paperwork.

Who will take up this challenge?
Who will put the child first and allow us to do our caring role?

I am passionate about this. Carers waste a lot of time, energy, money and emotions filling out frivolous paperwork.

Watch out for future days as I share what is frivolous.

Where is the wine when you need it?

Some days in a carers life are huge because you receive news you were not expecting, or some thing happens that shifts plans or dynamics. Or if you are really lucky you are ‘blessed’ with both in one day.

Today was a Hugely Bless-ful Day.

It was going to be a busy day anyway.

I went grocery shopping, which I have not done for 4 months. Still not an exciting event!
Some blood tests to check up on my health.
Coffee with my special friends who are just like me, coping with the crazy.
We have a new oven and range hood that James is installing.
James has finished the front wheelchair ramp. (Photo soon).
Plus general mummy stuff.

Then the news… one of our favourite carers will be moving on. For special needs parents this is the equivalent to a punch in the guts. It shifts your world. But it’s bittersweet as we have seen many carers going onto bigger and better careers and the joy they have brung to our lives.

Then the event … Abbey has her first big seizure while awake AND walking with assistance. Watching closer now as it’s a little dangerous for her and carer to catch Abbey. We need to think about safety when assisting her to walk, while encouraging her towards independence.

Sooooo it’s been a very huge day.

Sheesh, where is the wine?!

Photo: there are a few holes in the kitchen. I have an empty wine glass. I have looked high and low. Might need to go the whiskey!