Rainbow Hub SA Committee Member Cris Davis was a founding Chair of the Rainbow Hub under the auspices of COTA SA in 2019, and continued in that role until December 2022. The Rainbow Hub created a proud legacy under her leadership – you can read more under History on our Rainbow Hub SA website. Cris drew on her career-long experience as an educator as part of the Silver Rainbow Training team for over four years. She also initiated the Rainbow Hub Writing Group which met through 2021 – 2023 and is a member of the Rainbow Dog project team.
Cris has since been diagnosed with pancreatic cancer and is happy to share this piece she wrote in 2023. It provides some rich food for thought as we approach 2024 Planning Ahead Week.
If you would like to send Cris a message, email info@rainbowhubsa.com.
INDEPENDENCE
It started with my mother. They had her down as living independently; as a lively feisty talkative 82-year-old with a struggling heart. So, on that last day, they offered her a managed sleep so that they could shift the fluid filling her chest. And my sister, in the waiting room, was not told until the coma was induced and it was too late to say goodbye.
That started me thinking. Independence. Bodily independence. Independence of spirit. Doing things by yourself, acting like you’re alone. The mantra floating around in my mind since, through all the ageings of others and now my own, seeing how so-called independence places burdens on others.
The doctors that day not knowing that her independence was built on visits two-three times a day by my sister—helping her to shower or bath, bringing her meals, responding to phone calls about every minor crisis, being on call, making it all happen. My sister’s life captive. Yes, no cognitive impairment but needy all the same with mobility, hearing and sight lessening her awareness, reducing her options. The decision taken alone, no consultation, independent.
We write our Advance Care Directives. We’re both lucky. We have each other to name as substitute decision maker and family who would take it on. But how to convey my thinking about not being a burden, not wanting her to put her life on hold to look after me if I’m incapacitated physically. Hoping that independence of spirit will prevail over preferring not to be done for—until I’m done for! It’s not that I want to go into ‘care’ but I’ve seen too many partners stretched to the limit and I don’t want that for anyone, particularly not her.
The research shows people want to stay in their own homes. When the alternative is institutionalisation, no wonder, meals at set times, rules about visitors, un-agentive activity filing the hours and too few people for conversation. And so, we have almost empty houses with almost empty lives rattling alone in them and families or friends struggling to make a difference, knowing it isn’t enough. And some with nobody, buying connection through cleaners and gardeners. I see my friend drained, dealing with underlying health problems exacerbated by nursing her husband for two years longer than self-protection would suggest. Her GP says it will take her four years to recover. It does.
One thing that strikes me in the documentary about the dementia choir is dementia is an open topic. Yes, carers and workers being careful and respectful. But no-one denying it, skirting around it, avoiding using the word. Does that make it easier to live or not? Does it make it easier for family and friends?
The retirement village is a smaller house, but the aloneness remains. Each week her daughter cleans out the unused food and sorts out the chaotic pantry; I throw away out-of-date meat packs in the fridge. We all visit and phone but the hours are hollow. She is living out the myth of independence that made our mother leave her in the waiting room. We talk later that we should have moved her on earlier, but how do you pick the time? When the gerontologist said she couldn’t go home we were relieved. She talked about having a bad memory and we went along with it. We didn’t ever talk to her about her muddled money, her difficulty in choosing from a menu, her abandonment of agency. We just rode out the confusion, sorted things out, filled in her gaps, had conversations with each other and never said ‘remember’.
We say we’ll do it differently. We’ll tell each other if we notice losses beyond the usual mistakes of busy people. But will we? When is forgetting noteworthy? Every time she or I lose a word or can’t remember a detail I feel a hint of anxiety.
She says in her prim and proper way that she had always been very independent; Mummy always said that when I was 2, I insisted on dressing myself. I want to say: a lot of 2-year-olds do that and maybe 2-year-old behaviour isn’t useful at 95. Her obsession with not being beholden, and claiming competence long gone, wears us down, all who struggle to keep supporting her, she is so unremittingly unrewarding in her resistance and self-absorption—and her imagined independence.
AGEISM
We rail against the ageism we experience. The assumptions we can’t ‘do’ technology, the patronising receptionist wanting a photo of my referral form asks if anyone is there to do it for me—after all, she has my date of birth in front of her. I look for ways of changing the narrative.
I’m writing a grant application; a private foundation not needing bureaucratese; I’m deliberately pushing the boundaries of the genre, mirroring their online style. I break off to go for my Medicare Health Assessment, the format based on the imaginings of someone who hasn’t yet aged. Bean counting mindset making stupid questions statistically valid. I’m asked to write a sentence that makes sense and has a verb. I send it up with what I write and don’t engage in discussions of the grammar of sentences, meaning and verbs. Oh yes! Why don’t they ask us about our lives, our fears, our joys, what we can and cannot do—but can we trust them to record what we say accurately? I remember the ED doctor describing me as living independently with my husband and using a walking aid. Not true on either count despite the evidence and information provided but it was the first sentence on the template so he used it, there for all to see on my record. It still annoys me—especially the husband bit.
I seethe to hear the bloke telling his friend he has to stay to look after the other driver, a little old lady. When the police officer arrives to sort out the traffic hazard, he asks what happened and I make sure I speak first: the car in front suddenly stopped a the top of that rise, I stopped in time and he didn’t.
They ask us for our stories of ageism. It’s hard. It’s so pervasive. Covert. And some of it is in our minds too—inhaled with our breakfast coffee.
UNLEARNING
Look at me I never imagined I’d be like this. We walk slowly from our meal to our meeting, me matching her snail’s pace, her walker a thing of embarrassment and disdain to her. I want to say: why haven’t you imagined it, prepared yourself for possible futures, imagined how you’d respond and welcomed its support.
She says passionately: but ageing’s more than adjusting to change. It’s unlearning. Unlearning always coping. I’ve got through life by managing things myself, by coping. Now I need to learn to ask for help, to accept that I can’t manage everything alone. And I love her wisdom, knowing how her years of striving to handle life by herself made possible the richness of her world now, remarkable to be so positive, given some of the bleakness.
I love my walker she says. It’s so convenient. I can lift the lid of the seat and all my stuff can go in it. And my shopping hangs on the handles so I don’t have to make 2 trips to the supermarket. It’s so convenient.
Yes: they both agree. It allows us to do things we couldn’t do otherwise.