My eight-year-old granddaughter Imogen ‘Facetimed’ me recently for one of our usual lively conversations. She told me that at a school assembly she was to have a part in a presentation about CARE. She would be one of four classmates holding placards that spelt out CARE and she would hold the letter R. The words chosen to represent CARE were Consider, Aspire, Respect and Engage. Here’s my story about ‘care’ and my ageing parents.
Twenty years ago, I was 40 years young, in the prime of my life, and living in Perth.
With a professional husband and two daughters, my days are busy with work, hobbies and dreams. Hubby and I are vital, connected and in love. Life is good and life is ours.
Regular work flows, exercise and social activities consist of 10 hours of tennis a week, spontaneous lunches and dinners with friends, beach walks and short trips away. Music is my first passion. I’m a back-up vocalist in a band. Writing is another. My camp is in good working order. I am a red hot mama and not prepared for what is about to come.
It’s 1998 and a crisis is approaching like a tsunami.
No, it isn’t the Global Financial Crisis. It’s ageing parents who live hours away in the country. My folks, especially my father, need help and support. They reveal they are sinking in a black hole drama and can no longer cope. Dad is 75, my mother is in her mid-60s. There are family issues, and both are depressed and heading my way.
A removal truck has been hired. Mum and Dad are vacating their residence and moving to the big smoke to live two minutes away. Was it gender that they chose me? Was it because I live in an organic green suburb on the cusp of the Swan Valley? Perhaps it’s the awesome public transport, hospitals and doctors close by, and a choice of shopping centres and facilities. Or was it because I’m caring? Did my old parents trust me? Did they know I would aspire to consider them and give respect? Did they know I would always engage them and tune in emotionally?
During a six-week period over that Christmas in 1998, my life course changes. I have been selected out of four siblings to chart my parents’ final years. At age 40, I inherit them. Me. Who would have thought! I know I didn’t.
Mum and Dad moved into a small unit, one street away. Shift day is both hot and exhausting. My husband, older brother and I all help. My mother throws herself into the move, my father doesn’t cope at all.
Settling them in emotionally takes about three months. The big change for them is daunting. In the following weeks, I try to help them adapt to city life and its systems. I witness their capabilities and their limitations, one of them being a lack of confidence about driving in city traffic.
I help them navigate such places as Centrelink, my doctor’s surgery and other clinical services. Increasing awareness hits me that as your parents age and slow down in many ways, this translates into you needing to adapt your pace to stay connected with them – both mentally and emotionally.
By this stage, I haven’t been out to dinner in two weeks.
It’s now 2010 and I’m prioritising my time even further.
This isn’t how I pictured my 50s. My dad is now 87 and mum soon turns 75. Two European parents, both with ailments and depression. My father has become more frail. The real Global Financial Crisis has arrived and other siblings seem to be unavailable.
Luckily, neither of my folks have any form of dementia. Mum can still cook and clean and is competent around the house. This keeps her sane but she becomes overwhelmed with Dad’s age-related health issues. There are plenty of symptoms: back pain, aching legs, osteoarthritis, falls, hearing loss, vision loss, prostate issues, and dealing with new medications. I’m hearing and seeing changes on a daily basis. Depression and isolation are increasing, and my father is grieving for his once manly and active body.
As his daughter, seeing him like this is very confronting. He is weakening and I can display no weakness. He is relying on me. I now become selfless and it is during this phase I see a side of myself like never before. I’m now feeling like the informal carer. I have the doctor’s personal mobile number and chemists know me by my first name.
Women like me, voluntary or not, contribute a huge amount of our lifetime to old parents. We just project manage and are on call 24/7, and we somehow just slot the time in. We become miracle workers. Why? Because we wish to protect our parents. We become the soldier guarding the door. We attend doctor visits and have the ambulance on speed dial. We know all the emergency rooms, toilets and cafes and staff in hospitals. We become drivers, cooks, cleaners, interpreters, shoppers, administrators, financial planners, documentary makers, dinner buddies, social organisers, tea ladies, mental health workers, first aid nurses and so much more. Being an advocate for a parent is a job.
Time passes, and it’s now 2012
Forget learning French. Ageing terminology is my new language! Words such as macular, pulmonary and pedal edema come out of my mouth. Edematous is present in Dad every day. My father’s decline and need for outside medical assistance is increasing. Bladder cancer is detected. From the ages of 90 to 95, hospital stays become part of his regular cycle. These can be for four to 10 weeks in any one stay.
My father threatens to go on a hunger strike because he’s had enough and wants to come home. I have to distract him and think on my feet. Buy some KFC and take it to the hospital. That will work!
Depression is setting in for Mum. Thank the lord she is in reasonable physical shape. I am including Mum as much as possible in all my activities and errands to get her out of the house to lighten her mood. On top of that, I am at the hospital for hours every day watching over Dad. There is a lack of hospital staff. I’m checking charts and meds. I’m both tired and fully absorbed. I cannot remember when I last laughed.
The doctors are telling us that Dad should be placed in a nursing home; my father is begging me not to do so. I notice at this point he stops disclosing his ailments. Sleepless nights for me are becoming a thing. Is God really listening to me?
I start to see a weekly counsellor. I need to defragment with someone learned and professional who really understands. I’m starting to cry a lot at home.
Wine and chocolate in my fridge at home are a staple. Takeaway Pad Thai becomes a regular thing. My favourite jeans are too tight. Two new grey tracksuits and a pair of Skecher shoes have entered my wardrobe. I throw these handy clothes on without effort any time I get a phone call from Mum at 2am, when Dad is at death’s door and needs an ambulance.
Google has become my best friend. I begin to read all info on how to access at-home care services to keep Dad at home and respect my parents’ wishes. We need help.
Even though we are drained, Mum tells me she doesn’t want Dad to go into outside permanent care with strangers surrounding him. I spend hours taking notes. I read and learn how to choose a care provider package.
There are four levels of home care packages – from basic services to higher-needs care. These vary from three hours a week to more than 12 hours a week. The first step to take in getting some government-funded assistance for at-home care services is to go to the Aged Care Assessment Team (ACAT) website.
Dad’s ACAT assessment is done at their unit. It is approved just two weeks later with a letter sent confirming he has been given the highest level package.
I begin to Google some package providers and make phone calls, such as ‘Help at home: costs explained’.
Eventually, I choose a company that would send a fit strong man to assist Dad daily for two hours. At this stage, Dad was wearing adult nappies for incontinence.
Dad lived and suffered until he was 95. His passing was in autumn in 2017, about one year ago, but it only feels like four months.
He spent the final six months in a nursing home very close to our house. My mother stayed in their unit. As they were now separated and not living together as a couple, their individual Age Pensions increased by $100 each. His pension fully covered his fees and all medications at the facility.
Mum and I never abandoned Dad, and visited every day. Eventually, Dad’s dark night arrived. I was at an Adele concert with hubby and got a phone call from the home at 9.30pm letting me know. We left the concert immediately and drove in silence. We picked up Mum and stayed with Dad until he passed eight hours later.
It was pure relief that his suffering had ended.
I didn’t cry too much at his funeral, I had done my grieving long before. I read his eulogy, honoured him, then played his favourite song – I Know What it Is to be Young by Orson Welles. After you read this, have a listen, it’s both beautiful and insightful.
What did I learn?
Looking out for an ageing parent is important work. Try to not run from it. Yes, it’s demanding, requires courage and often feels epic in every way.
When the call goes out, I have learnt that some siblings may not heed the call. This may be because of distance, fear, insecurity, inadequacy. If you don’t get the help required, you will hopefully still make the right decisions. It reveals much about family relationships and siblings, but especially about you. For me, it was just about CARE and yes, there was a sense of old-fashioned duty.
What I’ve truly gained from this long experience is the ability to form deep relationships and accept ageing and vulnerability as natural. As a woman in this youth-obsessed world, I am and will be at peace. I hope to pass this on to my daughters. I also recognised the impact Dad had on me as a kid: the gifts he imparted, like music, and the abilities he instilled in me. These helped me later in life. He had made me strong. He probably knew that one day I would be the one to take this journey with him!
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Tips on caring for a loved one with dementia
Caring for the carers
