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.