Support, guidance & advice for todays primary carers
The comedian and author offers practical advice on how to survive the rollercoaster ride that most carers find themselves on.
We all know that we should fit our own oxygen mask first, even if our panicking children are looking at us in horror and will never trust us again.
Being a carer is much the same.
Often a very long-haul journey. For some carers, it’s a lifetime’s work. So pace yourself, carers, and get as much support as you can. If you crack, the whole thing falls apart and all the planning and organising will be for nothing! All the tears and pain and letters of complaint, and all the years you have spent on hold on the bloody phone.
Here are some suggestions to survive it all (reasonably) intact.
Look after yourself
If you feel a build-up or a blockage, call a counsellor or a plumber. You will need emotional and physical help to hang in there and survive the ride – maybe even enjoy it. Many people have told me that their time looking after their loved ones was one of life’s blessings.
It is a time when you learn a lot about yourself. How grown-up you can be. A time when you will witness levels of human compassion and courage and dignity and humility and grace that you are unlikely to encounter in any situation. When you will also see and do things for the human body that you thought only happened on Extreme Bodies.
The role of carer means you will often not look after your own health. Try not to neglect yourself. Your teeth may look in pretty good shape compared to those in the glass beside your parents’ bed, but don’t skip your usual check-ups. Regularly check your eyes. Go to the GP for a whinge. Get a massage.
Get to know what you need (and how to get it)
Getting support is a great idea but, if you’re like me, most of your friends have racked off because you have totally neglected to even put them ahead of getting your loved ones’ toenails cut. The only way I stay in touch with friends is by phone because I am in the car so often that it’s my call centre.
I still feel connected with people I love outside of family and if they pick up the phone, I ask them what is going down in their lives, and we have a big warm whinge to each other. Well, nowadays we start with a mandatory Organ Recital, as one friend calls it. This is where we talk about our own health and what hurts. A treat. Excellent.
How my week turned out
The past week is a fairly good example of life in the carer’s lane. The fast lane is a chauffeured cruise in a slow limo compared to the carer lane, which is a cross between Mad Max and the Mad Mouse – unpredictable, demanding, fulfilling, exasperating, joyful, mournful and difficult.
I was walking my daughter’s dog because she is hiking in Guatemala’s live volcano country. Or cruising off Panama in a yacht. Good for her. What she is not doing is walking her dog.
Pablo is lovely, but he needs an hour’s walk every day, then a half-hour shower to get half. A ton of sand out of his coat that otherwise turns soft furnishings into schnitzels. Then breakfast. His. I have no time for breakfast.
So I am walking the “one extra thing” at 6.30am, because that’s when you fit in that “one extra thing”, and my phone rings and it’s mum, 98, vision impaired, hearing impaired.
“Jean, there is something wrong with your father. He won’t wake up. Can you call the nurse?”
I have had dozens and dozens of emergency phone calls like this one, but they still feel like a punch in the gut: an electric shot goes through your body, your heart starts pounding, your stomach churns and you have gone from inert to alarm in a couple of seconds.
“Mum, press your alert button.”
“Press. Your. Alert. Button.”
“Can you ring the nurse, Jean?”
“Yes, I will. Stay calm. I will call back. Don’t forget to hang up.”
I call the nurse at the retirement village but she doesn’t answer. She is with another person who has pressed her alert button more quickly. I send a text. I ring mum back.
“I couldn’t get onto the nurse … you have to press your alert button. Pablo, come here! The button, the button on your wrist.”
“On my wrist?”
“Yes, press the button on your wrist band.”
“Oh yes, the button … I can’t press it.”
“Put the phone down and try pressing it again. Pablo, come here!”
I lure him with a stick, clip him to the leash and start dragging him as fast as possible away from the park and his friends. Know how he feels. Call from the nurse. I tell her mum can’t press the alert button, dad seems to be unconscious and would she mind checking in on them.
I cast off dog-walking shorts and rock’n’roll T-shirt and quickly put on “all occasion” clothes. Clothes that are less reflective of the chaos and lack of self-care that is my life. That means finding something clean and matching because even though your mother has been legally blind for 20 years, she can always tell when you don’t look smart, and she disapproves. You have let the team down.
Five minutes later, I drive the regulation hour and 20 minutes to manage the fall-out and I get another phone call. Dad was not dead, but he was very unwell and delirious and taken to hospital. Mum asks if I am coming. “I am on my way, see you soon.”
In the car, I make the many phone calls needed to cancel things. This is normal in a carer’s life – cancelling things.
The dentist is the first. I wonder why I bother to book medical appointments – they invariably get cancelled. I don’t often make social engagements because I can rarely keep them but I did book two lunches with friends! Friends I haven’t seen for a year. I cancel them.
I know the extra stress it causes when you try to make it work. That second extra thing that makes you pop. Best to let it go. If dad is in hospital, it will take at least a week to get him home. Fingers crossed. So I will need to be with mum as much as possible.
Dad has been mum’s carer since she lost her sight, but he is 95 now, very frail and has lost most of his sight but he still makes tea, coffee, finds food, by touch. Undoes her bra, puts the Polident on her dentures.
I need to be near the hospital, too, because there is so much you need to do to help your loved ones in hospital. From reassurance and warm blankets to cleaning all the stuff that accumulates on their table. And, most importantly, you need to be there to catch those elusive doctors.
I ring the hospital and try to get on to emergency to find out how dad is doing, and I am on hold for 15 minutes. Is he lost in the system (it happens) or on the ramp or in the corridor?
I try not to worry. When you can’t do anything else, don’t fill the gap with worry. Switching off for a moment does not mean you have lost empathy and compassion. It means you have fleeting hints of balance in your life. Don’t wait to seize the day, it’s probably cancelled. Instead, seize the moment. And practise GEM:
Gratitude: think of something you are grateful for. Even a green leaf on a tree.
Empathy: spare a thought for someone else and their struggles.
Mindfulness: Where am I in this moment? What am I seeing (hospital car park)?
Mum and dad have Home Care Packages, but they try to cancel their care on the weekends, saying, “We don’t need help on the weekends”, because that’s when they take a break from washing and dressing and eating, don’t they, and I’m only an hour-anda- half away, aren’t I?
My sister works in the NDIS. She says sternly, “Don’t cancel the care workers. Ever.” She understands scheduling and the impact on managers and care workers of cancelling and last-minute changes and now I have also learnt the mantra, “Don’t cancel the Care workers,” no matter how much mum and dad complain.
Things will happen, right, carers? And they will happen when you are somewhere else worrying that they will happen. That is when care workers give you some peace of mind. Remember there are many organisations that can help. Like Carers Australia, the National Dementia Helpline, Lifeline. If you need emergency respite, call the Commonwealth Respite and Carelink Centre.
If you’re experiencing financial hardship, call Centrelink. You know the drill: call before 10am, write down the name of the person you are speaking with, be patient, get a reference number, have a good book and a box of chocolates handy because you will be put on hold.
My biggest tip? Download a food delivery app. Cooking is just a bridge too far.
Jean Kittson is the author of We Need to Talk about Mum & Dad: A Practical Guide to Parenting Our Ageing Parents (Pan Macmillan).
Summer 2023 Out Now
Care & Ageing Well Expo Melb 2024
Carer Gateway is an Australian Government program providing free services and support for carers. Call Carer Gateway for support and access to services, Monday to Friday, 8am to 5pm local time.
Assistance with accessing emergency respite is available any time, 24/7.
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