The Irish Medical Times - Can we circle back: the inevitability of parenting your own parents
Infections can precipitate bouts of delirium but for the most part he had kept his wits about him. He wondered aloud if that was a blessing or a curse. He watched his body flounder and flail with great dis-ease and sadness. However, he was the source behind my dry sense of humour, and although a very quiet and proper man, we often exchanged knowing glances and wry observations that caught our shared thoughts on what was unfolding around us.
He taught me how to tell a story, he’s from a Dublin lost to the ‘rare ole times’. His obsession was Irish history, in particular the stories, secrets and certitudes of his hometown. As a teenager I may on occasion have rolled my eyes back as far as nature would allow, when he would reminisce about taking trams, or point to where Nelson’s Pillar once stood, often talking about how we are descended from the Tuatha Dé Dannan and how he could prove it!
When I visited him in the Nursing Home he asked the same questions; What time is it? What day is it? Had he missed Mass? One time he had me chase around the Home because he could ‘hear Mass’ and was determined to find the source. He had me peering into resident’s rooms looking for God tucked inside their radio or streaming loudly from the Spirit Channel. He had me stop people in the corridor and ask them in hushed tones “You know anything about a midweek Mass? Who’s saying it? Is the Communion real? No handshakes? I’m asking for a friend - This conversation never happened.”
I knew with swelling sadness that he’d never set foot again in the heart of the town he loved so well, so I encouraged him to tell me about his life. His memories kept going back to his own father, a man I knew as ‘Grandda’, a man who didn’t say much. I feel my Dad was closer to him nearing the end, as if Grandda was somewhere nearby, waiting.
I curse the times I didn’t pay a lick of attention in my eye-rolling youth, when every word out of my parents’ mouth was a damning indictment of their dearth of coolness. Well, payback is a beast, my 9 year old often ‘shelves’ me. Recently, at her own doctor’s appointment I went to speak on her behalf and her little hand reached out over mine, a sign to ‘be quiet’ that she stole from me, she looked at me, almost with pity and said “Mom, I got this”.
I know how it feels to be infantilized, I wanted my Dad, and indeed my daughter, to speak for themselves. But sometimes, no matter how hard they try they can’t get that boulder up the hill. They don’t have to do it alone - when elderly patients are accompanied to their doctor appointments, it often improves the experience for all involved.
I spoke to a full time carer, who looks after both of her parents, about the challenges she faces. She pointed out that although largely her experience of doctors has been a supportive one, some doctors need to take certain things into account; an elderly person may be hard of hearing, find prolonged waiting very difficult, be overwhelmed by the appointment, or struggle greatly with speaking through a mask. Allowances and patience with patients is key. She made the powerful comment “The elderly are still real people, it’s very easy to decide they are all alike. But I remember my dad once saying that he's still the same person inside as he ever was.”
My own father’s Geriatrician, Dr Graham Hughes, is a great example of a physician seeing the person behind the disease. He was exceedingly kind and patient, talked directly to my Dad but most importantly of all, he listened. He let my Dad’s thoughts wander and with light touches the doctor brought him back to the matter at hand. They both would look to me occasionally to contribute extra information, verification and be the voice my Dad couldn’t find. At times it could get awkward and I’d have to excuse myself (if I heard the word ‘waterworks’ one more time I was going to ask the Head of Irish Water to take over my brief).
There is support out there, lots of it, from public health nurses to HSE physiotherapists, dieticians, speech therapists, occupational therapists, social workers, carers, meals-on-wheels, social activities, support groups, home grants, carers allowance, mobility aids, drugs, rock n’ roll, etc. Like every public service there is never enough to go around but they are doing their best and if you get into the system, relief will come - granted, perhaps just a modicum. However, hopefully the government will learn from our Covid crisis, seeing how interconnected we all are, and pour more into the caring economy.
A great fear seems to be losing independence, the irony is ‘support’ allows you to keep living in your world on your terms. I should say, everybody is different, some elderly folks have been untouched by serious illness or loneliness and live independent lives with little support. On the other hand, some young people have a fleet of support for every move they make, that they just can’t shake - just ask Britney Spears. As people go, we are a variety of proof-of-concepts in the human experiment - no one support-stocking fits all, shop around!
Having an elderly parent with a serious illness was challenging but it was a journey that had its rewards. One of the strange quirks of my Dad’s Parkinsons was the changes in mood, at times he could start giggling out of the blue. His laughter reminded me of the humour we shared and within seconds I joined in - sometimes we laughed... until we cried.
Goodbye Dad.
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