Two things caught my eye. First, the headline. "Dear kids, don't ever shove me in an old people's home". Second one of my fav tweeps @clairebrooks posted the link and included an almost-throw away line "bit close to the bone this weekend". It was Easter, the one just past, and my concern and empathy switched on as I imagined the many "Claire's" out there, who may have, like me, been spending their time thinking about, caring for, managing the lives of, their ageing parents.
The article in question voices the experiences of Avril Moore, who has made the difficult decision - in retrospect regretted - of placing her mother into an aged care home. Avril does not want her adult children to place her in a home, and writes the following reverie, which I quote in large part because her words speak louder than any paraphrase I might write:
"Yes, the bathroom is clearly a death trap so help us organise some of those handles and perhaps a shower that accommodates a chair but I'd rather fall over in my own bath and drown than move to ... as above.My experience of caring for a mother with Alzheimer's has taught me, among a great many things, to never make comment on the choices people make concerning their parents. I don't, therefore, make comment on Avril's choices for her mother, and I feel compassion for the very real fear that underpins many a baby boomer's treatise on ageing - including Avril's.
I know, the loose rugs covering the worn carpet are a broken hip waiting to happen as too are the piles of newspapers, plastic bags and cardboard boxes we have taken to hoarding.
Feel free to chuck it all out but remember we have to die somehow and if it's as ignominious as slipping on a shopping bag or the recalcitrant pooing cat so be it, better than etc. etc ... Oh, and ditto the stairs.
Please refrain from talking to me as though I am a child. I might be slower to comprehend but I am still me and I want you to remain you, not some awful incarnation of Nurse Ratched and a kindergarten teacher.
And if the neighbours are complaining that I've been wandering the streets in my dressing gown or your father is talking into the garden hose again, remind them if it takes a village to raise a child it most certainly takes a suburb to look out for its old folks."
But I want to make this clear up front - I did not "shove" my mother into an "old people's home" (an aged care facility). It was a painful, heartbreaking, traumatic process to have to step into someone's life - as it happens, my mother's - and take that most basic of human rights away. The right to self-determination. Advocating self-determination is central to my values as a professional, as a critical pedagogue, and as a mother. Advil's desire to self-determine is powerful, just as my mother's was. Her desire for her final journey to be fragile, feral and at times frightening, echoes my mother's as the world slipped away, and she hallucinated, deteriorated and became frightened.
We delayed as long as we could. We delayed even though she cooked her chicken still in the plastic wrapper and ate it. We delayed through her repeated episodes of food poisoning. We delayed even though we saw her feeling with two hands down the side of the car to find the keyhole so she could drive - and then got in the car and drove. Just before she was diagnosed with agnosia as part of Alzhemier's. We delayed by making sure she lost her car license, and sold her car. We delayed by simplifying her kitchen cupboards, removing hazards. We delayed by accessing aged care packages, so that she had a carer visiting her through the week. We delayed through many ACAT assessments, and through her increasing confusions and distress. I left full-time work, and we delayed some more. We delayed by arranging for her to live with my brother, cared for by my sister-in-law. We delayed because we could not find the right aged care facility. Yes, we delayed.
Then, we couldn't. Caring for someone with dementia or Alzheimer's is a complex professional health care matter. There is a cross-over point. There it is, on my life line: the moment we took Mum's self-determination away. The day we sat and filled in the paper work, and signed on the dotted line. That moment.
Had we not put Mum in care, at a time when she could adjust to a new situation, we would have let her down. We would not have been providing her with the right care, by trained professionals. And yes, this has been a journey, taking much time, self-educating, visiting, bedside sitting. Building relationships with health care professionals, ensuring case management. And - so on. As Mum's adult daughter, I have witnessed, felt, smelt, done, thought about, much I never expected to. It took a great deal more time to have Mum in care than it did not to. It filled the four corners and the beating hearts of her children's worlds.
Yes, my brother and I, her enduring guardians, put Mum in care. Not because of the reasons Avril gave, but because it was the right thing to do.
And me? What do I want to say to my adult sons? Like Mum, and like Avril, I don't want to go into an aged care facility. But I'm not going to ask this of my children. I know they will struggle, like I have struggled, to accept the moment when they must decide, if I am unable or unwilling to make that call, if an aged care facility is the thing that next must happen in my life's journey. I know that they value, encourage and love my self-determination, my larger than life dreams, my passion, my poetry and energy. They won't want to take that away from me. It will break their hearts.
But there may come a time when they have to. I'm not sure if Avril knows this, but one of the first stages of Alzheimer's is to loose self awareness. I watched Mum stop being able to read. Stop knowing how to go for a walk and come home. This isn't an annoyance for the neighbours, this is distressing for the person experiencing it. Loosing oneself, as least as far as my experience of Mum suggests, hurts. Oh yes, there are the bright sides, the laughter moments, the black humour giggles. Like life, it's complicated. But - not being able to use a key to get in the door - hurts. Not being able to remember that a door is a door, or a key is needed, or where the toilet is, or what a toilet is for. These all hurt. But I have seen the great care offered by trained staff who reduce this hurt. Staff who kiss my mother on the cheek, and thank her for helping them.
I have argued elsewhere that we need a robust conversation about assisted suicide, and the difficulties of ending one's life when faced with Alzheimer's. Sometimes taking responsibility for one's life is about facing the hard realities that ageing sometimes brings. Perhaps Alzheimer's. Perhaps something else. Perhaps a quick death unexpectedly. Perhaps a ripe and healthy old age. Sometimes, for some people, it's about making tough choices about one's final journey. I don't know how to do this. No, not yet. Perhaps not at all. But owning my ageing, controlling it, shaping it's texture, the playing out of self, the not going gently into that good night....may not mean what I think it might mean. Or it might. Mum's journey has taught me that.