Dementia care a fraught situation for everyone
When I read stories of caregivers being caught brutalising residents in aged-care facilities it brings up the mixed emotions I had when a parent was in a lock-up ward for dementia patients.
Last week after a 23 year-old caregiver was caught on covert camera allegedly hitting and slapping Piri Hemi at the Cascades Rest Home in Hamilton an arrest was made. Hemi who had dementia and could not sit up or feed himself was immobilised so the attack of a defenceless and severely disabled elderly person seemed particularly brutal and produced public outrage.
For anyone who has a family member in care the story will haunt them as they worry and wonder what goes on behind closed doors. Fulltime care is expensive for the family and for the state after family savings have been pretty much exhausted, and there is the expectation that the fiscal high cost to provide for an elderly relative means that caregivers should ‘care’.
Even though staff are paid low wages, physical and mental abuse is never okay and Hemi’s family, having voiced their concerns to the authorities at Hamilton’s most luxury care facility, took the action of installing a camera.
Dementia is hard to be around and some families, after committing their relatives to an institution, feel that a curtain has been drawn over their responsibility. Out of sight, out of mind for a person who is literally out of their mind and no longer of the norm, is often what happens.
In Hemi’s case, his son Allan, his wife, and Piri’s wife of 65 years visited the home twice daily and noticed a change in Piri’s demeanour. He used to be happy and always whistling but had suddenly started to physically cower and shut down, hence the use of the camera to see if there was something amiss. And there was.
Caring for dementia patients is no picnic. The condition can come with severe mood changes in personality, which can be extremely trying to deal with. One feels for care givers paid low wagers, and who are often the only point of contact a dementia patient has if their families have abandoned them to their unhinged fate.
That wasn’t the case with the Hemi family, who say were still very much in Piri’s life and the multiple visits every day should have alerted caregivers that this was a patient whose family was on the case.
All the caregivers I met who cared for my mother were good people, and the Filipino caregivers in particular brought their own charm and humour to my mother’s life. They didn’t understand how so many Kiwi families could park their parents in care and hardly ever visit, and, on the rare occasions when they did, were full of criticisms about the care given.
In their country, they told me, people who looked after the elderly and the bewildered were revered and treated with respect. They couldn’t believe the abandonment of the elderly patients by their Kiwi relatives and it hurt them when they were told off and complained about for minor or imaginary wrongs toward patients.
I saw and felt the tensions from both sides and strove to try to make sure my parent was treated well by getting to know and form a relationship with the caregivers. Don’t get me wrong, I’m not saying that fair and proper treatment wouldn’t have happened if I hadn’t been a regular visitor, but I realised that my mother was now part of a community and that for me, living on the outside of that community and a visitor to it, I had to see it through their eyes.
Giving up control over your parent who has lost all control, and giving that control to strangers, is a hard baton to pass, but it must be passed for everyone’s sanity. Going into that that closed world every day, punching a security number in at the door and walking down narrow corridors encountering what my mother, in her right mind, used to call ‘daffy’ people took a little getting used to. It wasn’t Bedlam but it set up a mantra in one’s head the fervent hope that their fate might never happen to you.
I’d learnt how to navigate my mother’s dementia at home – not questioning or correcting her reality, and furnishing her with the comfort of white lies when she asked where my father was (he was dead but I replied breezily ‘‘at the office’) or where her parents were (to which I assured ‘‘coming along shortly’’).
Sparrows and black birds on the lawn eating bread she identified as hummingbirds, and she knew all the words to songs I’d previously never heard her listen to.
In her room we used to listen to CDs of old music hall ditties and musicals my brothers had ferreted out and would bellow out together absurd and mournful lines such as ‘‘it’s the biggest aspidistra in world’’ and ‘‘poor little buttercup’ or recite well-known poems (Wordsworth’s I Wandered Lonely as a Cloud) to show she still had a little bit of memory left.
Chasing memory in her dearly departing brain box was like trying to get in front of mercury running down a slope, but you can’t help but try, dreading the next inevitable gear change-down. I look back on those times now with melancholia and, not joy, but something akin to it. For a glass half-empty person mostly I remember the sun pouring through the window of her room and all the different caregivers popping in to see what all the hollering was about and who gave us space to create a world within a world.
The brain is a strange and wonderful thing and it was a privilege to see it in all its disorder in one person. Mum was too far gone to form a friendship there with any of the other inmates going through their own individual madness, but I was proud she could still could say please and thank you occasionally to the caregivers helping her along her lonely road.
Their job isn’t easy and they need the support of families, not only to understand the history of who they are dealing with, but to get the measure of the family they come from. It takes a village to raise someone through their second childhood.