By JAMES JEFFREY
It was a Sunday a couple of months back when my father first forgot my name. My sister rang to break the news, exhausted but still managing to muster an air of mock celebration. “Congratulations. You’re now ‘the man with two children’.”
It had been coming for a while. We’d been warned our father’s form of dementia would go from gradual descent to nosedive. He’d been staying with me only the Sunday before. The morning had found him confused and angry, but by late afternoon his old personality surfaced in the bleak murk of his brain.
We worked together in the garden, knocking off now and then for a cup of tea. As the day faded, I lit a fire and we drank beer, watching a fat, orange moon blossoming among the branches of the jacaranda. He was only too aware of his disintegration, and while we talked about happier things — mainly his grandchildren — the dementia kept drawing us back. “After all I’ve achieved in my life, this is all it boils down to,” he mused.
If anything, this was harder than seeing him in the full grip of his disease. It was the most bittersweet of nights and, as it proved, the closing of a chapter.
The following morning, as I spread jam on his toast, he looked at me with a look of genuine curiosity and asked: “What line of work are you in?” This from the man who’d been the embodiment of excessive paternal pride, cornering even the vaguest of acquaintances to show them something with my byline on it.
By evening, he was hallucinating. I found him on the street, convinced the house had been invaded by a platoon of silent strangers. The house was empty, of course. I looked at Dad — the man who’d raised me and my sister almost single-handed — and saw a small, pale man cowering from phantoms.
The next morning, he knew something had gone awry in his head, but still couldn’t quite let go of his silent strangers. I held him, something I’d barely done for years.
Even with his illness, he’d been relatively functional for years, but as the dementia made inroads into his brain, his visits became something I endured with a shameful lack of grace. How much so wasn’t hammered home until a couple of months ago when I, apropos of something or other, cheerfully described my personality as sunny.
Dad would often be in his own little world, but this time he snapped to attention. “You have what?” There followed a bout of sardonic laughter, one he rounded off with a Tommy Cooper-esque, “Ah, it’s the way he tells them.”
I pondered the bunched-up, sarcastic person I’d morphed into in his presence, angry at him for the way his illness had exaggerated his worst tendencies, angry at him for his glacial but undeniable erosion.
Other times I found myself hoping he would die — quickly and painlessly, obviously — to spare him the horror and to let me get on with remembering him as he was before the long unravelling began.
It’s a thought I wished I could unthink, but instead kept thinking it anew. All things considered, sardonic laughter was a gentle response.
Dad finally left my place and the phantoms and returned home with my sister to the house we’d grown up in. It didn’t last. There, in the hallway where he used to make comical monster noises, catching and tickling us in a game he’d invented to cheer us after our mother left, he collapsed so hard he put a hole in the wall. Within days, he was moved into the dementia ward of a nursing home.
I cried with shock after seeing him in there the first time. But during his more lucid moments, Dad seems almost relieved something happened and there are others making decisions for him now.
Sometimes he’s plotting his escape, other times speaking more as an observer, expressing pity for the “poor buggers” around him: the dazed, the blank, the frightened, the ones drifting the corridors in nighties and clinging to dolls, their failing brains sloughing history and experience and dragging them back to the beginning of life.
They shuffle to the door where visitors press a code into a keypad to let themselves out. They stare, pushing against the unyielding wood with looks of sad befuddlement. The door and the wall around it is painted with a gay scene of coral-reef fish, the only branch of the animal kingdom Dad ever declared himself to be “thoroughly bored” by.
Dad is sometimes happy in the garden, pointing out how you can see “all the way to the city”, the distant towers framed by bird of paradise and agapanthus, but sometimes he’s seized by random, obscure rages even there. Other times, he’s falling backwards through time, looking for his boots so he can clock on at the colliery he worked at decades ago.
He’ll probably wind up as a young father again, asking me how my day at school was. It will be a return home, of sorts.
He still has the company of his phantoms. Bit by bit, they grow more assertive as the flesh-and-blood people in his life slip out of focus, flicker and fade. Then, one day, I’ll go out into that garden and sit among the flowers with a man who looks like my father.
This article originally ran in The Australian and has been republished with permission
James Jeffrey is The Australian’s Strewth columnist and the author of Paprika Paradise (in which his father Ian appears rather a lot). You can follow him on Twitter here.
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Comments
32 Comments so far
James, I think I’m in the same place you are in. In just the past few years my dad has changed so much. Every time I came back from college he was a little worse. First short term memory suffered, then distant memories became distorted for him. The way he perceives the world must have changed drastically. He asks about 3 different questions about 5 times a day now that I’m home, with no recollection of ever asking them before. How do you make yourself patient? The disease, like you said, exaggerates the worst tendencies. He’s even more self-centered, and on some days, he acts like a temperamental 5 year old. I don’t know what to do.
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Hey James. I left a msg on twitter, but thought I’d let you know about my Mum. She was diagnosed with Multiple Myeloma in Sept 2011, and given 3-5 yrs. Dad died in ’68, so she’s rather special like your Dad. I feel your pain in some ways. Yes, they Are 2 different types of grieving, and, as an Alzheimer’s Coach I also empathise with what you are going through. Be kind to yourself mate.. that’s what He would want of a son who he would talk about with pride and awe I suspect.. chat soon I hope..
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Hi James,
I lost my Dad last year. He was my number one. My favourite.
I miss calling him, and writing him letters, and, just sharing news like what’s growing in my vege garden.
Give your Dad a hug next time you see him, and try not to beat yourself up too much about what you’re thinking.
Yvette
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They’re like different sorts of grieving processes, aren’t they? One involves actual, physical death, and the other the slow death of the personality. I like your mention of missing the vege garden updates. I’ve even come to miss the updates about what Dad’s planning to watch on the ABC tonight. More than anything – and this only occurred to me when I was with him the other weekend – I miss the sound of his laugh. There was a flicker of a smile the other day, though, so that was something.
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My parents aren’t there, YET. Big, big hugs and thoughts for you, James.
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I just wanted to say that I read James book a few months ago and loved it. At the time, I was touched by the quirky and sweet relationship he described between himself and his father. By chance I happened upon this article and shed tears at the end when I realised it was the same man. I am so sorry for what your father, yourself and family must suffer through. Thanks for sharing your journey. I am glad you got to spend that time together in Hungary and had a written journal of the funny conversations you both had.
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Thanks, Lisa. That book project came along at just the right time. Both my parents got to open up about a few things, but I’m so glad now I had that excuse to get so much of Dad into print. Looking back at it now, it still feels like a true record of our relationship.
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Ps James, I just wanted to add that having grown up with a bagpipe playing father, I also loved reading about your bagpipe antics. I bet your Dad was proud of you choosing that particular instrument. Well, as much of any us family members who must suffer, oops, I mean enjoy, the dulcet tones of the pipes could be….
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My heart goes out to all involved, including your father. Thank you for such a poignant & stirring sharing. I can only appreciate how heart wrenching it must be for you all. I do hope there’s some sunshine in amongst such a bleak forecast.
Best Wishes
Caro
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I wish you and your Family all the best, I can’t imagine what your going through. Thank You for Sharing
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James, you write about this experience so succinctly. We are going through this process with my father in law, and he is on the other side of the world. We visit England to see him at least once a year, and stay near his nursing home so we can see him every day. It is so sad. Today when I was sobbing over your story my 6 year old asked me what was wrong, and I had to tell her I was thinking about Granddad John. Then I did have to tell her that not that long ago he was like her other Granddad – playing games, driving the car, going shopping etc. I think she was amazed. My husband needs to talk about his growing up more with our kids I think. Thank you for writing this.
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I watched my Grandmother go through this before she passed away and it is just heartbreaking to watch. They have their good days and their bad days but eventually the bad far outnumber. My sympathies with you and your family.
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Such an eloquently written account of a heart breaking disease – you hope that when your time comes to leave this world, you get to take the many memories you’ve spent years creating, however some are never so lucky. Makes me appreciate every single part of my life more – even the bad bits!
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God bless you James, it is a special sort of hell to lose our family in this way. Inwould ask you to remember that there is no ‘wrong’ way to feel -it’s really normal to be angry and bitter while also sad and grieving – and it’s really normal to wish yr loved one would die rather than live on in such a way.
You and all those n this situatioon are in my prayers.
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My mum’s memory is failing her. We know something big is brewing as simple tasks like cooking a meal she’s cooked many times before becomes a difficult task for her. The more she stresses the wore it gets. She’s 63.
She knows it’s getting bad, I’ve pleaded with her to see her GP to get some answers, whether it’s just a diagnosis or possibly tips to how we can slow it down or how to cope if we can’t. She says she’ll go, but I think she’s afraid of a diagnosis.
The situation isn’t improved by the fact that I’m here and she’s in Denmark.
Has anyone else experienced this? Have you got advise for me?
Thanks for sharing James! Hoping this can bring some insight into this disease for me and others.
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My nan is 81 and mum 63 they are both not remembering basic things. It’s apparently the medication? What medication I can’t tell you, but they always say they will have a chat with the GP next week. Unless I go sit there and ask I don’t see either of them agreeing with me that something is wrong. Please remember your not alone and lots of kids are struggling with this. Sorry I have no answer just an understanding.
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This is such a beautiful, seamlessly written piece. I didn’t recognise the author’s name, but wasn’t surprised to see it was a journalist for The Australian, because respectfully, the writing is better than the usual writing around here. I wish MM would publish more of this kind of writing and drop the terrible colloquial language and ridiculous phrases like “cray-cray”. It does nothing for this site whatsoever.
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This story in itself is heartbreaking, and James articulates the struggles of seeing a loved one deteriorate with poignant grace.
I would however disagree with you in regards to your statement about mamamia’s content. One of the key reasons I enjoy this site so much is its unashamed cross section of the the media content available. I love that there is plenty of ‘fluff’, because when I want to relax that is what I want to read. There are stories from real people, and people who do not necessarily write exclusively for the site – remember a large amount of content is from self-taught bloggers! (I’ve also discovered quite a few blogs I now read regularly after they were featured on the site). They sum up the days news for me (much more efficient than the 30 mins it used to take me to do it myself), and then they even provide beautiful, deep, thought provoking content like this article.
So – thank you mamamia staff, for a taste of the ‘real’ world from the comfort of our computer. It’s like a group of friends – some prefer gossip, some prefer news, some prefer to discuss deep philosophical issues. They key is we keep them all around, they all have their time and their place in our lives!
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Hi Elli,
I agree that it is a good thing to have diverse content. I was more specifically referring to the style of writing and the language. I enjoy reading many things on this site, and always come back for the content, but James writes in an almost lyrical way, a bit like Rick used to. I felt the difference between this and most writing I read here.
I wouldn’t expect everything on here to be super formal in style, I just don’t think horrid colloquial phrases like cray-cray have a place in good journalism. And I do think this site is more than blog – I think to grow the team needs to take the level of writing they publish more seriously, including sub-editing.
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Bless you, Linda. Thanks for the kind words, though I feel duty-bound to mention that a lot of my work in The Australian is riddled with horrible colloquialisms and the odd neologism. The other day I got “kaputnification” into print. I’m hoping it will be in the Macquarie within a couple of years.
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My Mum is 71 & will be moving closer to us soon because her husband has cancer & no longer wants her at home. She has Alzheimer’s in the early stages and it’s like a slow motion decline but fear with her move into her new assisted living home she might decline more rapidly. In saying that I’ll be glad that I can see her more regularly and that my 4 and 6 year-old can spend more time with her before she doesn’t recognise them. It’s such a sad experience to share with someone that you love so much. I thank all those that share their story as I feel at my age it isn’t something many others can relate to.
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James thank you so much. I’m crying as I type this because it is so familiar but thank you. I feel less alone after reading that.
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My mother is 59 and has reached the stage where she is hallucinating. She’s never been a drinker or drug user or anything like that so it does seem unfair that it’s got her so early (it started about 3 years ago). My brother is living with her at the moment but he wants his own life back soon. We have no idea what we’re going to do with her, she refuses to see a doctor which isn’t helping. We had an involuntary assessment done on her and the community health team that assessed her said because she can feed herself and keep herself clean she is not eligible for any extra help.
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What an amazing article. I am so sorry your father succumbed to such a debilitating illness. Sending hugs and best wishes.
I’m halfway down this path with my grandmother as her granddaughter and carer atm. The frustrating thing is I see more of her decline than the rest of my family does, because I am with her daily. She opens up to me totally and is more honest about her symptoms which makes it difficult for me to then explain to her son (for example) that she is not doing as well as he thinks.
Worried about the future.
I hope and pray that one day there could be a cure to end this terrible way that such dignified ppl are forced to end their lives. It is so unfair
K x
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Where has my comment gone? Can you look please?
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Hey Minnie M.
So sorry – can’t seem to find it anywhere, would you mind resubmitting?
- Freya
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I’m so sorry, I could only read halfway through this. The tears made it too hard to read. Definitely close to home.
My father passed away several years ago now but i’ll never forget when my mother called me in tears as the man she had been married to for 40 years had not only forgotten her name, but her face; he asked her how much she was being paid to be his nurse.
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Thank you for sharing your story, it was beautifully written.
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This is such a beautifully written and heartfelt description of what it’s like to watch a beloved parent fade away. You could have written my story – it’s my experience with my mother to a tee.
Thank you.
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Wow. Stunning. And so sad. I feel sick at the thought this may be ahead of me. My father is 70 and is getting forgetful. How do I tell whether it’s more serious?
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Dealing with this ourselves at the moment. It sucks.
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I saw a report the other day where treating dementia and Alzheimer’s patients with coconut oil was having good results. I immediately called my MIL and told her about it. Apparently it produces ketones in the liver which are then absorbed by the brain. It’s worth a try.
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