“The doctor called me a hypochondriac parent, but I pushed for the tests anyway”
Meet Rachel, mother of four and carer to her daughter who has Type 1 Diabetes. Rachel’s story is a clear example of the importance in trusting your instincts!
After dealing with the heartbreak of losing her youngest child ten months earlier, Rachel knew something was seriously wrong with her 3 year old child Hailey. Even when the doctor referred to her as a “hypochondriac parent”, Rachel pushed for further tests which would reveal her daughter’s diagnosis.
Within 24 hours, her daughter was being rushed to hospital by plane on the verge of slipping into a coma.
Please tell us a little bit about yourself and how you came to be a carer.
I am a Mum with my main carer role with my 2nd eldest who is Type 1 Diabetic. She was diagnosed a month before she turned 4. I act as her advocate when people are surprised she eats cake, her nurse and action plan co-ordinator when she is unwell, I crunch her sugar levels regularly to find patterns that may or may not exist and I am the 1st go to person for her school or friends when she is not with me.
She was diagnosed 10 months after we lost a son at birth to a fatal heart condition that was not detected until he was born. Our daughter had just turned 3 and the symptoms of her condition were there within a couple of months. Her diagnosis was not as quick as it probably could have been because our family was distracted by grief and just getting through each day.
I took her to the doctor and had asked for some blood tests because there was something just not right, she was not coping with a full day at kindy and always angry. The doctor called me a hypochondriac parent, but I pushed for the tests anyway. 24 hours later we were being flown to hospital because her levels were on the edge of going into a coma. Life since then has developed into the team effort that it requires to keep her alive and well, managing each day, hour by hour.
Explain how your caring role has impacted on your life? Have you changed as a person?
Becoming a carer for my daughter has impacted my life by making the ability to work difficult because she is the first priority. Her school has been fantastic but there are only 2 adults who know the extent of what she needs, if they are away then she stays home or I am at school for the day too.
Immediate family has not made themselves available to learn about her condition and there is only a few friends who have learnt but I am always available 24/7 if needed. Night time care for Hails is the scariest part for anyone to take on so it is generally only myself or my husband.
I have learnt to say no to attending every invite because there are some situations such as birthday parties that are difficult to manage. I have also learnt to not expect support from others because even though I am willing to give needles, others would rather not and I can not put my daughter in that situation.
I have changed as a person because normal sleep is a distant memory, I can look at a plate of food and have a general idea of the carbohydrate count and I have learnt to let peoples misinformed statements slide at times because it is easier.
What are the positives you experience as a carer?
Hails diagnosis came after the worst 12 months of my life. I can see my role as a carer as a positive one because I have the good fortune for her to be born in the 21st century where only 100 years ago this condition was full of restrictions and complications and and early death. Her condition brought the gift of valuing the food we eat, physical health and most recently to recognise the role stress plays in day-to-day life for everyone.
As a family each of our kids has taught us something and brought with it a gift. First my oldest daughter was born missing neck muscles and my carer role was seeking the medical support to give her the best chance to be normal, we learnt to respect each individuals’ physical abilities rather than the disabilities.
Our eldest son taught us how to strengthen our family, respect the emotional limitations we have as a family and to lean on each other. If one of us was having an emotional day then there was others to lean on who understood because of the same journey.
Our youngest son was born at a time that I swore I was never going to be pregnant again. Dealing with type 1, grieving for a son and having a daughter who is not going to fair well in any sort of accident was more than enough I thought. However, his gift is that no matter what life throws, you will get through it and good things will come. He is the healing that we needed and provides so much laughter in a house where circumstances can spin about on the spot.
What do you find are the greatest challenges as a carer?
The greatest challenges as a carer is that it is 24/7. My husband and I only have quiet time together after kids have gone to bed. Hails has had one sleepover with a friend who took it all on and would text or phone me with any questions but the challenge is, that I was still available no matter what was needed. We do not have weekends away unless we are all going, our meals are planned out so not much spontaneity and there is not packing diabetes into a box, leaving it in the corner and dealing with it later. Where ever we go it comes with us.
What do you feel are the most important things medical/allied health professionals should be aware of?
More compassion, I know that there is scientific evidence of how to manage my childs condition but real life comes first and we don’t always get it perfect. My family’s mental health and wellbeing are equally important as dealing with my child’s condition so we might grab a special icecream and not give insulin or take a lolly from the Santa at the shops as a treat.
I would also appreciate the doctors etc who don’t specialise in type 1 to be willing to seek the opinions of those who do when we go in for something unrelated. I had a doctor wanting to bomb her system with antibiotics because she was type 1 just incase her cough developed further rather than follow the same treatment of my non diabetic child who suffered greatly because of the missing neck muscles.
What is your advice for new carers?
If you can and your family needs it, get support and support each other no questions asked. A lot of our additional stresses have been when others (outside of the family) have questioned what we do and that used to cause us to doubt ourselves or attack each other.
It is important to have time out but that isn’t necessarily in the form of big holidays or special dinners. For us it is in the game of cards after dinner, cranking up the music for a dance off or a hot cup of coffee in the sun, weird I know but these are reasonable things to do.
A last word on being a carer?
Being a carer is a part of you but not necessarily all that you are. It brings challenges every hour sometimes but your ability to connect with others facing challenges and being helpful is beautiful. You are also never alone because while the condition may be different, the role of caring is the same for everyone.