Part 7 - The Alzheimer years (2011 to 2020)
Rob’s Forward
This is the last, and most painful part of Mum’s story, and it ran for over 9 years. Alzheimer’s is an absolute bastard of a disease. Having lived through it with Mum and our family, I now find myself asking people what their plans are should it happen to them. Many say that they don’t want to live through it, that they’d rather be dead, and I understand that. It’s not just bad for the afflicted, but for all of those around them.
Gwen at Thelma and Louise, Neutral Bay
But how do you arrange to die? It’s not like voluntary euthanasia, where someone with a terminal physical illness is still mentally capable of deciding to end their life. But, with Alzheimer’s, by the time you’re sick enough not to want to go on, you’re also too sick to be allowed to make that decision. It’s a seriously awkward Catch-22.
I’ve wondered whether there is some way that you could create some sort of document while you still have your mental faculties. Something along the lines of a list abilities that are important to you. Things like knowing the names of your immediate family members, and their relationship to you, being able to recall the year and month, knowing your favourite movies, knowing who the prime minister is, being able to complete a simple Sudoku, etc. And if you lose say 70% of these abilities and have a diagnosis of Alzheimer’s, then you give the authorisation for your life to be medically ended.
I can’t imagine anything like that being put in place during my lifetime. Each step into the difficult territory around end‑of‑life decisions requires a long gestation period, and rigorous debate before even small steps are taken. And this one is no ‘small step’.
Perhaps the most talked about symptom of this vicious disease is the loss of memory, and that’s usually broken down into short‑term and long‑term memory. Many sufferers will lose their short‑term memory first and be unable to recall that someone visited them the day before, and yet be capable of remembering people and events from their childhood. Gradually, though, even those old memories fade, and it feels as though the past itself is being stolen from the person you love.
But, living through Mum’s Alzheimer’s with her I discovered something I hadn’t thought of. A person with Alzheimer’s also loses their memory of their future, and by that I mean the plans that either they’ve made or others have made on their behalf. They can no longer remember that someone’s coming over to take them to a concert next Tuesday, for example.
So, not only has the person had their past stolen, but also their future. Not only is there nothing for them to look back on, but there’s nothing to look forward to. For those of us without the disease, these are two very important parts of our lives. How much do we all look forward to and talk about our upcoming month‑long trip to Europe? How much pleasure does that give us?
For the person with Alzheimer’s there is no past, and there is no future. There is just this one immediate moment. And gradually that becomes their life. A pinpoint in time that disappears just as quickly as it appeared.
I grappled with how to tell Mum’s story as this all unfolded for her. And then remembered that my sister Kate had spent more time with Mum than anyone else during these difficult years. And without that commitment from Kate, those years would have been very different for Mum, and quite possibly there would have been far fewer as well.
During that time with Mum, Kate (ever the writer) made notes along the way. The good times. The funny times. And the bad times. So, I’ve chosen to use that work that Kate did, with some added comments from me where appropriate. What Kate wrote gives such an insight into Alzheimer’s itself. A very personal account of a loved one’s journey through the mental maze, written in the moments it was unfolding.
Kate’s Forward
I was Mum’s primary carer from 2011 to 2015, coordinating the growing team that helped hold her life together as Alzheimer’s progressed. With a background in counselling, disability, and mental health, I co-founded We Care Central Coast, developing programs for carers of people with disability and dementia, and working alongside NSW Health, Commonwealth Carelink, and local community organisations and often in advocacy roles. My professional experience in aged and disability care often gave me one perspective, while my two brothers had others — and we didn’t always agree. But beneath every discussion was the same shared motive: love for Mum and the desire to give her the best life possible. Whilst I helped with everyday tasks, my brothers and their partners, daughter, nieces and nephews were totally brilliant in ensuring Mum had a rich cultural life, attending theatre, musicals, galleries, dining and movies. We so strongly believe this engagement with the arts added to the quality and quantity of her life.
Gwen in a typical outfit
Before you continue, note that there’s some coarse words and swearing along the way. I toyed with the idea of taking it out altogether, but it’s how I felt. My brother Rob was a great support. He said it’s real…it’s what this frustrating bastard of a disease reduces its carers to. And why wouldn’t it? You’ve been warned…it’s a small amount, and only when necessary.
Excerpts from Kate’s Diary ‘Journeying with Mum through Alzheimer’s 2011 – 2018’
I always saw Mum as the homemaker and Dad as the intellectual. Dad was the one who ‘should have been a lawyer’, but due to the Great Depression of the 20’s and 30’s, and Dad’s own personal great depression later in life, he became a shipping clerk instead, doing law on the side for friends and family, finding loopholes to outwit ‘the system’.
Alf as a barrister
Mum’s personality didn’t jump off the page like Dad’s. Mum was steady, conservative and reliable. Thank God she was more stable! Not hugely emotional, but still able to give a hug, more so as she got older. Mum was able to chat and give opinions but was often easily swayed if those opinions were being challenged by someone who appeared to have a superior intellect.
So, when Dementia, in the form of Alzheimer’s, crept insidiously into her life, the ‘I’m not stupid you know’ defences went up almost immediately. Mum had often said that she wasn’t as smart as her brothers: ‘the boys’ or her sister, Mary, so during the early years living with dementia, those feelings of ‘not being as smart’ began to make a competent woman feel like a lesser person as her mind began to fill with holes and tangles.
Later on, Mum’s life reminded me of The Truman Show, with Jim Carrey playing the oblivious Truman, while the rest of the cast were dodging and weaving to keep his life on track.
The Truman Show
In Mum’s mind her old life appeared to be chugging along reasonably well, pretty much as it always had. But gradually, more and more people became a part of the cast of The Gwen Landsberry Show, helping to keep Mum’s life running as smoothly as possible…and super important to her and to me, helping her to stay in her own home for as long as possible.
5 March 2011
Part of an Email from Rob to David and Kate:
Hi there
I just thought I’d write to raise some concerns re Mum.
As you’ve no doubt both noticed, she’s becoming increasingly forgetful.
While she’s still able to mostly cope, I do worry that one day she’ll forget something major, and it will be a danger to her.
I’m also concerned re her driving. She doesn’t go far now...just local. But even so, I’ve nearly been hit by her (she didn’t even look when coming out of a side street). She’s due for a medical test to renew her license next week. I’d be much happier to get her a Cabcharge card, but I’m just not sure she’d be that happy with this.
It’s important that she preserves her dignity, and as much of her independence as possible, and that the aging process is made as comfortable as possible, but also that she’s safe.
Anyway, let me know what you think.
Love
Rob
RL: Click here to read more about taking Mum’s car
3 August 2011
Increasing pressure from the boys that Mum’s not coping, not safe in her own home. And me, the ham in the sandwich. Writing comments to both brothers. Trying to stay centred, not scared, and do the best by Mum. Like we all are. Juggling. Trying to keep the balls in the air. Misunderstanding with Rob today.
Juggling
10 August 2011
Got this email from Rob today. All is good and sorted – at least with Rob. Phew!
Hi there Katie Kar Kar!!
One other thing I meant to say was how much I appreciate what you’re doing for Mum.
With this increase in travel for me [I’d started a new job and was doing regular travel to Vietnam, New York and London], the one thing I’ve been most worried about is Mum….so your timing on all of this is excellent, and I can’t thank you enough.
I’ll talk to you about all of this when we go out….but just wanted to say a BIG thank you!!
Love
Rob
Xx
Kate and Rob
31 August 2011
Alan arrived today as I was leaving Mum’s. He said the Nursing Home has firmed up 5 days work a fortnight and he’s happy to stay with Mum when he’s there and in Sydney to do the pays etc. Rob and David are really happy too. Good to have his experience with Alzheimer’s to keep an eye on where Mum’s at.
Alan and Gwen
[Rob: Alan is Kate’s ex‑husband, and Charlotte’s Dad. He ended up coming down a few days every fortnight for a couple of years, which worked really well for him, as the Nursing Home Kate refers to above was just a few kilometres from Mum’s place. And it worked out well for Mum too, as she had company. A fantastic win all around!]
7 October 2011
I’m lying in Great Nana Lottie’s bed in ‘my room’ at Mum’s, on my back gazing into the darkness, waiting for the alarm. I’m well used to the pat, pat, pat of rubber-soled slippered feet on kitchen tiles.
Kate on Lottie’s bed
[Rob: At this stage, Kate was coming down to Mum’s for 2 to 3 days a week, pretty much every week, something she did for almost 4 years].
“Hi Ma.”
“Hi darling. Did you sleep well?”
“Yes, fine thanks. How did you sleep?”
“Oh, I’ve been awake for quite a few hours.”
Always the same opening lines to our morning. Now something about the weather.
“It’s a bit chilly this morning,” says Mum.
“Yes, but not too cold now,” I say and smile.
“We’ve got a big day ahead,” she adds.
“I know. It’s going to be fabulous.”
“I’ll just go off then and have a shower.”
“OK. Love you Mum.”
“Love you too.”
Pat, pat, pat. Off she goes. It’s 4.00 am. A cool spring morning in Sydney, Australia. We’re taking the 7.42am Country Link Train from Central Railway Station to travel back to where Mum was born – Junee Reefs: population 136 in the last Census.
5.45 am, and we’re in with our taxi. We have way too much luggage of course. I’ve prepared Mum and I for all seasons – including being snowed in for 3 months! [RL: you can read the full account of Mum and Kate’s Junee trip by clicking here].
Country Link first class train travel is fabulous. Snuggle down in roomy seats for 6 indulgent hours of reading, dozing, relaxing in carriages whose rock-and-roll-squeaky-rhythms bring comfort. It’s like being in a cubby house, watching the world go by. Country, city, town, fields, railway crossings, patchwork yards with vege crops, bright blue pools, ramshackle sheds, rickety fences, and a myriad of people and activities, just like a Where’s Wally puzzle book or a Bruegel painting.
View out the train window
I’m looking at Mum, frail and strong all at once, leaning over her find-a-word puzzle intently. Mum in pastel pink with silver hair, a bandaid on her hand from a recent fall, delicate gold and pearl earrings clipped onto practical earlobes. And I’m loving and loving her, and thinking this trip is simply one of the best choices I’ve made. Tomorrow we go to Illabo country show but today we arrive in Junee. I’m excited to see where Mum grew up and hope to find old school friends still alive.
We pick up the hire car and drive to Temora to visit Mum’s cousin Margaret and her husband, Bill. They’d once farmed sheep and crops on their acreage until an accident cost Bill his fingers. Now they’re settled in town, their house on the market, preparing for the inevitable downsize — something Mum couldn’t bear to contemplate.
It is a precious reunion with people who had meant so much to Mum all her life. Margaret and Bill had lost their daughter Denise to leukaemia twenty years earlier — the same stretch of time since Dad died. Time slips quietly away, yet one word, picture or scent can bring it all rushing back. We looked through Denise’s wedding album: she’d known she was dying but married anyway, a luminous bride walking through a forest of golden leaves. Such a sense of her presence.
Gwen with Margaret and Bill
8 October 2011
It’s 70 years since Mum’s seen Dulcie – one of the three ‘Burmister girls’, Dulcie, Marie and Shirley, collectively nicknamed the ‘3 Escaped Monkeys’ in their youth. We head up the back to Junee Heights. Dulcie greets us at the door, dazzling white curly hair against country-girl-weathered skin. We sit down on the beige and brown brocade lounge chairs and Dulcie and Mum start chatting, as Dulcie pours tea into the Royal Albert teacups, just like I used to collect. The sultana cake is homemade of course. So much for these old gals to catch up on while I just sit and listen, and take in a room that likely hasn’t changed much in 30 or 40 years. Just like Mum’s. Things were bought to last. And they were expected to last. Like bodies and minds. Meant to last until you die. But sometimes they don’t.
Gwen and Dulcie
9 October 2011
Today Mum and I stood before the new War Memorial Monument at the Clock Tower in Junee, as Mum traced the names of her 3 brothers with her eyes then her fingers.
“How does it feel to see their names Mum?” I ask.
“It feels strange,” she says. “It doesn’t feel real.”
Gwen at the war memorial
When we reach St Joseph’s church for Saturday night service, I am surrounded by peace. How long since I’ve entered a church – except for a funeral or wedding? It feels rich and warm like red velvet, peopled with memories of the past. Mum and I light candles and kneel and pray together for those we love. During service we sit close up‑front, holding hands.
St Joseph’s Church’ Junee
It’s late. I put my book down, turn the lights off, climb up and into the big four poster, pull the doona tight around me like a cocoon, and listen to my Mum’s gentle breath. I want to be like this, next to her, when her last breath has been breathed, just to touch the skin I’ve touched since birth, to feel it one more time before it becomes cold and unyielding.
I reach over and place my hand on Mum’s, feeling knobbly knuckles and broad hands that can still swing a mattock and hold a shovel to keep her garden growing, and count the ticks and tocks of the big old clock passing time.
10 October 2011
Four fabulous days in Junee and now we’re homeward bound. The landscape rushes by and we two are encapsulated. Strobe-like images of pastoral scenes flash past, framed by railway carriage windows. I feel our minutes flashing by too. I want to gather them all up, stop them running so fast toward empty, toward no time left.
Every word Mum says or repeats, every phrase and memory, a movement of a fine strong hand, a caring word from kind lips I know so well.
The train is our Tardis, with everything moving in slow motion and me picking up the words that she has dropped to hold them to my heart, or to my ear like a seashell just to hear her voice again. And she, listening to my dreams and hopes with always-Mum encouragement and interest. “Really darling?”, she’ll say and then I talk some more and she always believes me; always believes in me.
Chuggeda, chuggeda, chuggeda - sideways squeak creak bouncing up and down chuggeda, chuggeda, chuggeda - clunk clank squeak squeal rocking side to side. Day fades to night and we two could be anywhere in the world, cocooned in shawls and scarves with lights streaking striping cutting the sapphire night into pieces. Go on forever. We are here. We are now. Go on forever in this place where there is no need to draw hands on a clock or know what season it is or even to remember one’s own name.
11 November 2011
Email to my brothers:
Hi guys
I ring Mum now every morning to ensure she has the right day crossed off in her diary and is feeling OK. And every evening to see what she’s having for dinner. Just spoke with Alan re ‘Charlotte stuff’ and then got on to talking about Mum. Alan said that she’s doing well in other ways than memory, which is good. He said he watches things like the stove and cooking, and she doesn’t forget to turn the stove off and cooks everything in the correct order. If someone is heavily down the dementia path you may find the butter put in the oven, peas served with ice cream, or the house or herself dirty or unkempt. It’s good having him there a few days a fortnight. He said it would be good if Mum read a little. Even just a story from the Women’s Weekly. Anyway, this is positive stuff and as you both said, she’s doing all her gardening and keeps a pretty immaculate house.
David replied: What’s wrong with peas and ice cream?
Peas and ice cream ..😃
Rob replied: Yep, that’s all good and positive. So, if Mum was a vegetable, which do you think she would be? I was thinking cauliflower, but I’m not sure why. Maybe coz it’s my favourite vegetable at the moment.
Haha! I send back to them both.
9 December 2011
I watched my darling girl again trying to remember the name of the Prime Minister and the capital of Tasmania, then trying to draw hands on the clock to show 10 past 11. The specialist asked her to remember 3 items: an apple, a watch and a pen. She just had to hold them in her memory for 5 minutes. But they fell through the cracks.
I hate this fucking disease.
4 April 2012
The trees in the yard drop constant leaves. I swear sometimes Mum is sweeping them up as they fall. I did see her pick off some leaves that looked about to fall and place them in her bin.
[Rob: Leslie and I were pulling up to see Mum one day, when we spotted her doing just this with three on the nature strip. The pre‑emptive leaf grab.]
Leaves!!! They keep on coming!
31 August 2012
I love how Mum doesn’t rush to help when I’m hobbling on my arthritic ankles or trying to get out of a chair. She waits for me to ask. I’m trying to do the same for her.
People say ‘what if’: What if she falls and breaks her hip? What if she leaves the gas on? What if she can’t remember what day it is?
I can’t answer these ‘what ifs’. I only know I will support my Mum to live as she chooses for as long as is feasible.
7 September 2012
Hi there David and Rob
Char was paying Mum’s Visa card today and noticed Mum had drawn out $1,000 on 5/9. She also drew $800 on 24/8, and $480 on 22/8. She only had $90 in her wallet, and she and Charlotte couldn’t find any more cash in her usual hiding spots.
Of course, it’s her money but let’s chat next Tuesday?
Kate x
8 September 2012
Mum rang last night and said she’d found $200, then I rang again just now, and she’d found another $1,000 in a sleeve of a jumper...so fortunately she hasn’t got a cocaine habit!
She’s putting it somewhere safe (hopefully where she mentioned to me) to re-bank on Monday.
Rob
2 November 2012
Email from Charlotte:
Hi all
Yesterday I moved Nana’s car under the carport as Rob told me hail was coming. Nana wanted to know where the keys are kept. She said that just because the doctor said she can’t drive at present, which of course she said she wouldn’t, that no one has the right to take her car keys away from her in her own house. I explained that Rob had asked me to and mentioned that she’d accidentally driven last week. I felt like I was disrespecting her. I think it’s different for me being her granddaughter rather than her child.
x Char
Charlotte, Gwen and Kate - the three Landsberry ladies
3 November 2012
I get the keys and move Mum’s car when she’s in the shower, hiding it in the street behind, and hiding the keys in the secret drawer of Great Grandma Lottie’s dresser in my room, until we can work out what to do next.
[Rob: I eventually picked up Mum’s car from her place a week later. It was one of the saddest days I can remember. I wrote an email to Kate, Charlotte and Leslie that afternoon, and you can read it here].
9 January 2013
Sometimes when I have repeated something for the 10th time, I feel like grabbing Mum by the shoulders and shaking her until she remembers. And in a second the anger is gone, and I feel so ashamed.
23 January 2013
“So, what are the boys up to?” Mum asks, cluier than they realise. “I know something’s afoot”.
I tell her they’re worried she could fall and hurt herself.
“If I do, then I’d have to go to hospital and that would be the end of it,” she says matter-of-factly!
4 April 2013
“Hi Mum…how are you?”
“Good!”
I hear her puffing into the phone.
“Just been cleaning up outside. All the leaves get in the gutters, and it looked such a mess. Of course the neighbours don’t really care”.
“Well, they’ve got two little kids Ma and maybe it’s not as important to them.”
“No of course not, but I like it all neat. It’s amazing how it gets in such a mess.”
“Yes it is, isn’t it? So, Charlotte came yesterday to visit?”
“Did she?”
“Yes. She was there for 2½ hours. Said she had a lovely time with you.”
“Oh well. I forget things now, you know?”
“Yes Mum, I know.”
“I’ve just been cleaning up outside. Gets so messy with all the leaves in the gutter.”
“Bet it looks good now?”
“Yes, it does. Nice and neat. You know the neighbours don’t really care.”
“No, well maybe they have different priorities. Both of them work and they have the two kids.”
“Oh yes of course. I’m not criticising them.”
“No, I know you’re not Mum. So what else have you been up to?”
“I’m not sure. Oh Charlotte came yesterday.”
“Oh excellent. She mentioned it to me and said she had a lovely time with you.”
“Yes, yes it was good. Now whose daughter is she?”
“She’s mine Mum!”
“Yes, yes, yes. Silly me. I forget a bit now you know.”
“Yes Mum. I know. It’s OK. I forget sometimes too.”
“I haven’t seen Charlotte for a while.”
“She came yesterday, Mum. Remember, we were just talking about it?”
“Really?”
“Yes, you just said how nice it was to have her there to visit.”
“Oh yes. It was nice to see her. She bought me some beautiful flowers.”
“Great! What sort?”
“Yellow and white.”
“Lovely, and so nice for Spring.”
“I’ve been arranging them with some leaves.”
“Bet they look great! Did you use the sacred bamboo?”
“What’s that?”
“The bush up the back.”
“Use it for what?”
“The flowers.”
“What flowers?”
“Doesn’t matter. Have you seen Claire recently?”
“I don’t know. She might still be in Perth.”
“No, she’s back now.”
“Oh Ok. I’ve just been tidying up outside. Amazing how many leaves there are. The neighbours don’t really bother you know…”
Greg and Gwen gardening
14 April 2013
I’m so tired. It’s a year and half now that I’ve gone down every week to Mum’s mostly on the Sunday. Leaving three night’s meals for Greg then staying with Mum Sunday/Monday then over to Charlotte Monday/Tuesday to pick up the boys, do dinner and help where needed. Mum and I shop, do medical appointments and cook together and I leave labelled breakfast fruits, dinners, desserts and treats with microwave instructions. And every night the alarm on my phone rings at 6.40: ‘Remind Mum to have dinner’. I call and walk her through the process of getting a meal from the fridge, heating it and serving it on a tray, step by tiny step. Sometimes when I arrive on Sunday, I find a meal still in the microwave. Even in the minutes it has taken to heat she has forgotten.
Gwen’s fridge - full of labelled meals
Wednesday nights David picks Mum up, and she goes to their home to have a family night. Fridays Charlotte is there all day and does shopping, cooking, doctors, etc. Rob usually sees her at least one night a week and takes her out somewhere on weekends. Alan is there 5 days a fortnight. It’s a well‑oiled military operation! And this doesn’t include her medical team, pharmacist and neighbours!
Rob and David say that Mum is lonely, lacking social contact, could fall and should go into a nursing home. Mum has always said that she’ll have to be ‘dragged out kicking and screaming’.
My sense is that it’s too late for Mum to go into a retirement village and too early for a dementia unit. I’m certainly not going to drag her kicking and screaming from her home.
Not yet. Maybe never.
[Rob: Not to disagree with Kate too much, but David and I were actually talking about ‘aged care’ rather than a ‘nursing home’. Somewhere there was more social contact, as well as a safer environment. This was a massively difficult time for all of us. We three kids had a ‘robust exchange’ of ideas over a long period. Opinions would sometimes change. We all wanted what was best for Mum, but our views on that differed. And in the interim, we barrelled on, maintaining a sort of ‘artificial world” where Mum thought she was as capable as ever, oblivious to the network of assistants keeping her ‘running’.]
[Rob: Kate was AMAZING with her meals for Mum as you can see above. She was doing this for Greg when she left to come to Mum’s, and then for Mum when she returned to her place. I would often drop in on Mum on a pre‑work morning walk, or on the way back from dinner, only to find she’d hardly touched the food Kate had left. “Hey Mum, you’re going to be in so much trouble when Kate comes down on Sunday – you’ve hardly eaten any of this fabulous food she left. It’ll be the wooden spoon for you.” We’d both laugh, as I’d pull out some food for her and help with the preparation.]
27 May 2013
Email received from David:
I spoke to Mum on Saturday, and she complained about a sore leg again. Then yesterday she was complaining again, and it was cramped and swollen. She is also getting much worse at a very fast pace re getting up after sitting for a while. She is quite unsteady, and I worry she will fall. She said that she wants to see a doctor about her legs. I have a feeling something bad is brewing.
29 May 2013
Email received from Rob:
It took me ages to convince and reassure Mum that it was 6:50 at night. She had just got out of the shower and was getting dressed for the day. She was really confused. She eventually said she’d like to write it down so she wouldn’t get confused again…so she wrote down 6:50pm, Tuesday 28th May. This wasn’t happening 18 months ago. And this is just one of a number of changes.
30 May 2013
But Mum is still assessed ‘low care’. I’m watching each week that I’m there for signs that she may be in danger. But the doors are always locked at night, the gas is always turned off, her tablets are virtually always popped from the Webster pack at the right time, her home and garden are immaculate, her weight remains steady, and she is beautiful, bright and gracious.
I say to my brothers not to be scared for Mum and to talk with her about their concerns but instead we have had ‘secret squirrel’ meetings and viewings of facilities to put Mum into when Mum has said on many occasions that she doesn’t want to move at this time.
2 June 2013
My brothers are seeking a facility where Mum can ‘age in place’ – low‑care to high‑care to dementia‑care to palliative‑care to death.
Mum too would like to ‘age in place’– her place!
My brothers ask why I’m so determined Mum should stay at home and I almost burst myself with frustration replying that this is Mum’s wish – to stay at home – not mine and that I support whatever Mum chooses.
Mum would prefer to die in her current bed or dozing on the lounge, weeding the garden or dealing with any area in her own home if possible. And for now, she’s doing fine. I think they see me as hanging on desperately to what I know, to my great grandparent’s home, to familiarity, to Mum. Maybe they’re right in a way?
[Rob: There was no right and wrong. Just a set of imperfect choices, continual reassessment of the situation, and having some options should the need arise. The last six months were tough for Mum and for all of us. By March of 2020, she’d started to go downhill quite markedly, and we were in the middle of COVID with lockdowns and rules that were very restrictive. When Mum died in November of that year, I said to my psychiatrist, Michael Diamond, that it was a shame that Mum hadn’t left us a note to say what she wanted to happen when things got to that bad stage, or that we should have spent more time finding out what she wanted before the dementia got bad. And Michael said, “But she did tell you. She always told you that she wanted to die in her own home. And then you took her from there.” He was right of course…Mum may have fallen in her home, ended up in hospital and died a few months earlier, but would that have been that bad? It was a sad moment for me.]
14 June 2013
When does a person lose the right to choose to wear their own wedding rings? Mum is misplacing hers sometimes. Fortunately to date they’ve been found. My brother wants Mum’s rings tied together with a ribbon, stored away and a plain white gold band bought for her to wear. One that ‘doesn’t matter if it gets lost’. On one level this is of course practical.
“Why would I do that?” Mum asked this week when I suggested to her that it could be a good idea.
“I want to wear the rings that your Father gave me.” I explained that my brother was worried she could lose them.
“They’re my rings,” she said. “If I lose them, I lose them.”
20 July 2013
It’s the little things. Like the silver mixing bowl I found this morning in the linen cupboard.
9 September 2013
“Where are we going?” Mum asks for at least the fifth time as we walk from Westfield shopping centre car park, past the food court and across Spring Street.
“We’re going to the physiotherapist, Mum. Wendy Lowe. She’s going to have look at the pain in your back.”
“Oh.”
A few moments pass.
“So where are we going?” And I say it again.
“You’ll know Wendy when you get there, Mum. You’ve gone for years.”
I have to go into a different place in me to stay centred – it’s almost like a meditation.
And so she takes a breath and looks at me as we wait for the lift then says very brightly, “So, where are we off to now?”
“We’re going to the physio, Mum. Wendy Lowe. You’ve seen her for years. She’s a lovely lady. You always have a good laugh with her.”
“Oh. What for?”
“For your back, Mum.”
“Oh yes, my back. It’s so bad. Like a knife is in between my shoulder blades.”
“That’s why we’re going Mum!” I smile broadly at her.
“Going where?”
“To the physio.”
“Oh really,” she says looking at the floor numbers in the lift. “What for?”
We get out of the lift and walk into the physiotherapist’s rooms.
“Hello Gwen!”
Wendy Lowe is so happy to see Mum. “You remember me, don’t you?”
“Of course!” says Mum, smiling broadly and nodding.
“Just take a seat and I’ll be with you in five.”
And off goes Wendy to finish another patient. I quickly jot a note for the receptionist to let Wendy know Mum has Alzheimer’s and won’t remember her from the last visit.
We sit for a moment, and I pass Mum a magazine.
“So what are we doing here?” she asks.
“We’re about to get onto a rocket ship and fly to the moon, Mumma. OK?”
She laughs out loud. “I think you’re just being silly!”
A rocket ship to the moon is as good as anywhere else!
“I think I am too, Mum! But that’s half the fun.”
“Sure is,” says Mum. “You’ve got to have a laugh in life.”
I kiss my Mum on the cheek, link my arm through hers, and we sit close together looking at the latest pictures of the Royal Family in The Women’s Weekly until Wendy comes to take her for her treatment.
Off they go, arms linked like conspirators and me in their wake carrying the bags. Mum is so excited to be going wherever she is going. And when we are there, and the treatment is happening Wendy gives Mum exercises to do.
“Now you will remember these won’t you Gwen?”
And I ask if she got my note. She nods but still goes over the exercises Mum is to remember to do.
“Make sure to put your feet up every time you sit down, Gwen. OK?”
Mum nods. Always willing to please.
Maybe, no matter what your education, you really don’t understand Alzheimer’s until you’re living it?
1 November 2013
My Mum is slipping away from me. Incrementally.
Years ago, I remember standing with my cousin, Margie at Aunty Mavis’s graveside. I lost Mum twice she said, once to dementia and once in death. But I think it’s more than two deaths. It is constant little deaths.
I try to help Mum hold her world together for as long as she can, grabbing threads of memories from right and left, above, below. Threading them back in. Trying to make a web – a safety net.
28 November 2013
I want to touch my mother’s soft skin and run my fingers down the cracks of her face where laughter has creased it up and sorrow has pulled it down and wet it with tears. I want to remember how my mother feels and how her warmth means life.
And yet I’m scared to touch her too. Scared to see the fragility of the skin on her arms and how easily it damages. Paper-like with watermarks and blotches. So easily torn and bruised. Warfarin does this to people. Makes the blood rush thinner and closer to the surface.
When I walk into her home now, I inhale deeply, and can smell hundreds of sausage rolls, Anzac biscuits, melting moments and roast dinners; the scents of Dynamo washing liquid, Glen 20 spray, fresh sun‑dried sheets and Avon’s Imari perfume.
We’re putting together the shopping list.
“I’ve got to get some of those …um…roly poly’s,” says Mum.
“What are roly poly’s Mum?”
“You know,” she laughs, making circles with her hands and pointing to the corner of the kitchen near the toaster.
“They’re paper towels Mum!”
I hate that I sound almost frustrated.
Why can’t she remember? How fuckin’ stupid to call them roly poly’s. More guilt.
13 October 2013
Mum’s finishing her hair as I arrive.
“Hi Ma. Just going to the loo.”
I drop my bags in my room and head into the bathroom. The toilet roll is really stiff on the holder and I realise it’s not a toilet roll at all.
“Fuckin’ shit!” I rip it off the holder and throw it across the room. “Fuckin’ fuckin’ shit!”.
The kitchen towel roll lies on the toilet floor, jaggedly cut in half to fit on the toilet roll holder.
I look in the cupboard. There are plenty of toilet rolls, yet somehow something didn’t gel and suddenly the anger is there again, and I want to rip the toilet rolls apart, bash the louvre doors of the cupboard until they split. I want to get Mum and shake her until she’s back to normal. I hate this disease. I hate it taking my Mum. I hate her. I hate me for hating her. I hate Alzheimer’s. I just want what she always wanted: to live ok until she died quickly and neatly. It’s not that fuckin’ much to ask God. It’s not that fuckin’ hard.
And sitting on the loo I send a text to my daughter. The reply comes in a flash.
“The good thing, Mumma, is that Nana found something like she was looking for and made it the right size to fit.”
4 Dec 2013
I go to Mum’s fridge and it’s virtually empty every single week.
I wish I could remember the last time she cooked her beef stroganoff or her chicken curry, or the last time she roasted a leg of lamb. If I’d known it was the last of each thing, then I would have savoured them even more.
I wonder what time of what day of what month of what year did Mum actually forget how to cook a roast?
20 December 2013
Where do the memories go? One by one they drop into the blackness. Like lost socks.
31 December 2013
I watch Mum sweeping and it is, for that moment, all that there is. As long as leaves are falling, she’s happy to sweep. She doesn’t care if the wind blows in new leaves 5 minutes later. She just starts sweeping again with perhaps a ‘titch titch’ at the wind, or the neighbours for not sweeping up the leaves in their gutters. But a breath later even the titch titch is gone, and she’s sweeping.
5 January 2014
Walked into Vinnies at Chatswood today with Mum, after our doctor’s appointment. Chris, who has gone to Mum’s church for years, looked directly at me and asked in a hushed voice “So, how’s your mother?”, and I say, “Hi Chris, why don’t you ask Mum?”
Fuck that pisses me off. Sure, Mum has Alzheimer’s but how fuckin’ rude are people not even trying to say “Hi Gwen, how are you?” I know I get too angry. People just don’t understand this disease. They don’t think.
29 January 2014
Mum’s circle of friends is narrowing. As her memory has gone little by little, so have the invitations and phone calls. We come in now from shopping and she eagerly goes to the mailbox, but mostly it’s junk mail or bills. We walk in through the door, and she says, “I’ll just check if anyone’s called.”
“No one rings me much now”, she says.
“I know Mum, I guess it’s just to do with age. I’m sorry.”
“Oh, it doesn’t matter,” she says.
She put her Christmas tree up by herself in early December last year. And as we took it down on January 7th, I held the white floral fabric dove I had made her perhaps 20 years ago, the precious glass and bead balls and cheerful baubles, tinsel and bright bears, drummers, and angels. I put them in a box gently, laying them to rest for another year, or maybe for ever? Who knows if she will be in this world or in this house for Christmas 2014?
“I needn’t have bothered putting up the tree, you know,” she said. “I thought the children would like it.”
“But you liked having it up Mum?”
“Yes, it felt nice.”
[Rob: I’m sitting here bawling my eyes out as I read this. Kate has so perfectly captured what this time was like for Mum, and for we children, that’s it’s excruciatingly painful to read it. Every week, another small part of Mum disappeared. Something that she could do just last Tuesday, was gone the following Monday. It’s as tragic to me now as it was when it was all happening 9 years ago. Maybe more so. And for some reason I chose to write this chapter of Mum’s life immediately after I’d finished Chapter 3, which was when Mum was 22, writing and receiving love letters to and from her soon to be husband. That was 64 years before this period that Kate’s writing about. So much had happened. So much had been forgotten.]
24 March 2014
Little things to keep watching:
The heater – Mum can still use the heater. I tested her out this week.
Windows and doors are always locked.
Gas – one burner was left on last week. The first time. I’m not telling the boys. But watching.
26 April 2014
Claire rings to ask if there’s any space in Mum’s freezer for some food she’s making. I sneak in early the next morning to throw out the last foods Mum cooked before she forgot how to a couple of years ago – her lamingtons, beef stroganoff, spaghetti bolognese. All things Mum was famous for. I sneak them out in plastic bags when Mum’s in the shower. I can hardly bear to look in the bin.
“What will become of this house when I’m not here?” Mum asks for the 100th time a little later.
“I don’t know Mum. Let’s have cuppa on the front porch in the sun?”
Ben and Gwen on the porch at 42 Laurel Street
3 July 2014
David asked about the electric knee rug he gave Mum for Mother’s Day two months ago. I find it amazing that he doesn’t realise she can no longer learn to use something new. It doesn’t matter how many times you show her. It’s like that ‘new learning’ part of her mind is dead.
I hunt around until I find the knee rug bundled up in behind the double lounge chair and plug it in again for her, showing her the settings and putting it over her knees. She’s not that interested, though she thinks it’s a good idea. I know she’ll walk to the toilet, come back, look at it and wonder what it is. And when I go home tomorrow, it won’t be long before she bundles it up again and stuffs it into some corner where she doesn’t have to try and work out what the hell it is and what it’s meant to do. But at least this time I’ve tried to make David happy, just as I’m sure he tried to make Mum happy with the rug.
22 August 2014
A couple of visits ago we looked at the photo of Mum and Dad. “I know that man, don’t I?” Mum asked, holding the framed photo. “Yes Mum, it’s Dad.” Blank look. “Alf…the man you were married to.” Still a blank look. “You remember Dad? He used to play the piano. Was grumpy but really funny.” Mum shrugs “Not really,” she says, and I want to grab her and shake the plaques and tangles free to make the memories drop back where they should be.
Alf carrying Gwen, 1951
26 September 2014
One day not that long ago, Mum was finishing off the garden and housecleaning, then popping ‘down the street’ to get a few extra items from the fruit ‘n veg shop for the dinner party she was hosting that night.
One day in the future Mum will be curled up in a foetal ball, or lying flat on her back in bed, or dozing in her chair with her dentures dropped down, or hanging out the washing, or having a fall, and then at some stage soon after she will finally take her last breath, just as she took her first breath at birth.
And it will end as it began. As it ends and begins for us all.
On a breath.
2 Nov 2014
Chook shopping at Coles today and I picked up an RSPCA approved packaged chicken. Mum asks what ‘RSPCA approved’ means.
I say it means the chooks are not cooped up, that they’re happy chooks. Mum picks up the plastic covered pack, looks at the chicken, then looks at me.
“Doesn’t look that happy to me,” she says.
An RSPCA Chicken
24 November 2014
What would it be like to wake up look around and have absolutely no idea where you are?
Maybe when younger, after a few drinks too many? But what if it was in your own home, every single morning as you opened your eyes there was nothing familiar, and you had to try desperately to pull in the threads of memory to have any idea where you were. What if you didn’t even know who YOU were? If you shuffled into the bathroom, looked in the mirror and saw an old tired wrinkled face staring back at you. A complete stranger.
What if you were to pick up a mixing bowl and had no idea what it was, what it was used for or where to put it, so you just popped it in the linen cupboard near the bathroom on top of the pale blue towels?
My mum wakes up each morning not knowing at first where she is.
She still knows who she is, though is constantly surprised at how old the person in the mirror is.
Will that change?
14 January 2015
Dementia: a bugger; a bastard – a shit of thing.
Russian roulette with a dementia bullet loaded in the chamber that happened to shoot Mum. I hate it because it won’t let my Mum die where she wants – in her own home – unless she dies soon.
Sometimes I almost will her to die before the day comes when she can’t be here anymore.
Today I arrive as usual in the morning, ring the doorbell, then open the door calling out “Helloooo.” “Mum…I’m here!” I bring my bag inside, put it on the hall seat blanket box, lock the screen door behind me (a habit embedded into me by Mum), walk through the formal lounge and dining rooms calling her name, opening the folding doors to the family room, the room that’s held so much fun and laughter over so many years as family and friends have gathered for a myriad of events.
4 of the O’Brien gals applying sunscreen
And there she is. My Mum, in a soft pink top and bottle green tartan trousers, a pink flimsy floral scarf at her neck as always, looped around and tied in the ‘Mum’ way, little gold earrings with rubies that Aunty Jean gave to her not long before she died. There she is. Pale-faced-head-back-mouth-open-teeth-dropped and not a sound, not a breath, not even a movement in her chest and just for a moment I say, “Please God, please God, please…”, and I say “Mum!” and nothing. And maybe, just maybe, today Mum has got her wish.
My brother said we have to do something about Mum as “I couldn’t bear to walk in and find her dead”. I could I said. That’s what she wants: to die in her own home.
“Mum”, I say again, gently touching her arm, which is still warm. And suddenly she starts, does a little nose-snort-thing, shakes her head, pushes her teeth up with her tongue, looks at me vacantly for just a moment, then smiles, and laughs, and it is as though I’m the Queen of England come to see her with all her happiness and joy overflowing contagiously so that in a heartbeat we’re both laughing and talking and holding, and my Mum is still here, still in this world, still in this house, exactly where she wants to be. And all feels good.
15 February, 2015
“Isn’t that too bright?” asks Mum holding the flat two-holed watermelon button in her hand.
“No Mum, it looks fabulous. See how it picks up the colour in the flower?”
She nods, smiles and threads the needle automatically, just as she’s done hundreds of times, then passes it to me. I tie a knot at the bottom of the double thread and hand it back to her.
“What do I do now?”, she asks.
And so I help my Mum: The tailor who had trained in one of Sydney’s two top fashion houses in the 1940’s. The young woman who had sewn the undergarments for her trousseau. The mother who had hand-made all my frocks and bonnets. The seamstress who had made my wedding dress. I help her, my hand over hers, to put the needle under the fabric of the apron, line it up with the button on top, and pull the thread through both.
She lets out a sigh, smiles and continues to sew the button on with large uneven stitches.
“Is that right darling?”, she asks.
“Yes Mum, it’s absolutely perfect”.
Always the seamstress
22 February 2015
Winter’s coming. Mum’s not going to be able to operate the heater this year. It’s been too long in between, and I know that ability is lost. And she can’t learn a new air conditioner. I never wanted it to come to this. I don’t want to make this decision.
24 March 2015
Today it’s driving me crazy. She came out in the morning, opened the back curtains, peered out: “Look at that!” she said. “There’s not a leaf moving at all. Isn’t that strange?” She takes a breath, looks out and says it again, and again and again. Literally with just a breath in between. How can a whole memory be lost in the time it takes to breathe a breath?
Sometimes I send a text to Rob or to Greg and say, “Can you believe there’s not a leaf moving this morning?” Somehow the smiley face they send back diffuses the situation and makes me smile.
[Rob: The movement of the leaves. The height of people. The car numberplates that held hidden initials of friends and family. Mum became obsessed with all these things and more. One week it would be the leaves, and the next it would be the numberplates. For Leslie and me the favourite was, “So, Leslie, do you like driving?”. That one was a constant in the repertoire. Just as Billy Joel could never do a concert which didn’t include Piano Man, Mum could never drive anywhere with us without checking on the degree of joy Leslie was extracting from driving. I’d sometimes look at Mum when she asked it for the 5th or 6th time, and she’d be smiling as always, and I’d wonder whether she knew exactly what she was doing and was just amusing herself.]
26 March 2015
Being a carer sometimes feels like this:
Being a carer sometimes feels like this
27 March 2015
Mum speaks so often about hoping to get into Heaven. And I say, “Mum why would you hope? Can you honestly imagine any creative God and Father not allowing you into Heaven with him?” And she agrees with me, nodding and smiling. I say, “So, you know you’re going to heaven?”, and she shrugs and says, ‘I hope so’.
I arrange for the priest at St Thomas’, her church of 60 years, to drop in, say ‘hi’ and assure her she will be up with the angels. I also arranged for my cousin Father Mark to make a similar trip.
4 April 2015 (Easter Sunday)
So today I ring Mum and ask how she is. She is tight-lipped and saying “OK”. But in that abrupt way where I know it’s not OK. I ask what’s wrong.
“Well” she says, “just that it’s absolutely appalling that no one has phoned or rung me all yesterday or today and absolutely unforgiveable that not one of them has dropped in.”
“One of whom, Mum?”, I ask trying to think of who she could be expecting.
“Well one of the people who have walked by the house. And it’s a special day. I just can’t understand it.”
“Mum, people who walk by don’t normally drop in.”
Tight-lipped silence on the other end of the phone.
“It’s lonely sometimes isn’t it, Mum?”
“Not at all. There’s always something to do. Cleaning up and sweeping. Washing. I’m fine.”
“But Mum it’s so quiet now Claire’s gone into care, isn’t it? This is why Rob and I were speaking with you about trialling respite.”
“What’s that? What’s respite?”
“You know, we talked with you the other day.” But as I begin to tell Mum again about the “wonderful benefits of respite care” I trail off, aware she’s shutting down again. I can feel the lips tightening and the body drawing itself up in defence, away from the telephone, closing me off, not wanting to hear.
So, I change the subject to all the rain we’ve been having, and off she goes, happy as can be. I speak with Rob and say I think it’s not going to be pleasant next week taking her off to respite and likely her forever care. L
6 April 2015
It’s 4am and since 1.30 I’ve been just lying here thinking of Mum. I can’t imagine that today and tomorrow will be our last days together at her home. I hope we’re doing the right thing. I want her in a place near me, here on the Central Coast, where I can see her each day – just pop by for a cuppa and a cuddle. I don’t want her to be in Neutral Bay and one and a half hours from me. I hate this.
Yet this is what came up for her right now and we can’t say no. Or at least I can’t see the sense of it. More and more of her is lost each day and really, it’s escalated in the last two months. Do I wait until she has a fall next week, next month…then rush her to hospital and try to find a bed somewhere? This would be craziness.
I rang Mum five times yesterday and she didn’t remember any of the times. Rang to see how she was going getting ready for church, and she was all muddled with the time. I’d forgotten to get someone to change the clocks. I tried to explain that daylight saving had finished and that she actually had an extra hour, but that just increased the confusion. I got off the phone and texted Mum’s lovely neighbour Rheena, who got Graham and the little boys to go in and change all Mum’s clocks to the right time.
Beautiful autumn day and all I can think of is that I’m about to go to Sydney and spend that last day shopping and cooking and staying overnight with mum before we “put her away”, and she has no fuckin’ idea.
Could I have done more?
9 April 2015
It’s like I felt when Dad died, this hollow aching. It hurts so much. So hungry. Yesterday morning the emptiness hunched me over, ached my gut, plodded me around the house, demanded to be filled. But in the end, I just crawled under the bedcovers, fully clothed, ugh boots too, and lay on my side covered and wrapped, cocooned, watching the grey day outside my window.
Everything else squished in and under the bedcovers: life and ageing and loss and grief and illness and waste and death. And what’s to show for all the struggle when you’re sitting in a million-dollar room in a facility? Who can be bothered, and wouldn’t it just be easier to get my panadeine forte, lyrica and oxycodone from the cupboard, the little pack I’ve saved so long, and take it all with a litre of gin or a bottle or two of good wine from the cellar, and let Charlotte and Greg get all my insurance, so I don’t have to put my Mum away? But what if I made a mistake and only ended up with my stomach being pumped. Or, what if I took it all and then something happened, a phone call, a message…something that made me wish I hadn’t?
I just don’t want to do this. I just don’t want to ‘place’ my mother into a facility.
21 April 2015
Huge storms, power cut, wild winds and here I am hunkered down with coffee just made, candle and camping light. I haven’t spoken with or seen Mum since I ‘put her into Lansdowne’ this day last week.
I can rationalise all I like, but the core point I keep coming back to is the deception. I was THE person mum trusted most in the world. I knew that all she wanted to do was stay in her home. Simple. But not in a sense. Because how does one do that, or allow a darling girl to do that, with ever increasing inability to shop, cook, feed, and heat herself?
2 May 2015
Where does Mum go when she’s not present in this world? Does she have a secret place behind those vacant eyes? Is it like a secret garden?
The rickety heavy old gate to Frances Hodgson Burnett’s Secret Garden groans open and there is massive debris in a garden that has been neglected for years. Overgrown with weeds, reeds, tangled branches and bracken, as Mary and Dicken, led by the pert red breasted Robyn, fight their way through and find somewhere hidden, dark and deep, one green shoot.
There are no new shoots for Mum. Just tangles and plaques that will grow thicker and more dense until there’s no light at all in my Mum. And this is what science says.
The Secret Garden
Yet science is the first to admit that they don’t have all the answers and certainly I can hope that my Mum goes somewhere when she’s not present in this world, and that perhaps it’s a place of light, beauty and regeneration of the soul – just like Frances Hodgson Burnett created in her own fictitious story.
7 May 2015
I’m so tired. 9.30 am and I am almost nodding off. I hadn’t counted on missing caring for Mum so much.
I cleared the house and cupboards, and all is neat and ready for my Mum to come home after respite.
Yet in my heart I think I know it’s not the right decision.
I walked back into her home Friday last week before we flew out to Perth, and it felt like an old lady’s home. So dull, old-fashioned, and dimmed without my Mum’s energy, light, hospitality and laughter filling its corners.
It was just an old-fashioned old lady’s home.
30 May 2015
Today Mum’s twin rosewood sleigh beds are being picked up by a lady who bought them for her young sons. I ran my fingers along the smooth dark wood of the bedhead, then lay down on my back, body sunk into the mattress, looking up at the ceiling with its intricate plaster cornices, following the pattern, the curled lines and garlands of flowers.
I followed the pattern like a maze, coming back to where I’d begun, knowing that Mum, Nana and Great Nana had all lain in this room and no doubt gazed at the ceiling just I was. Charlotte too, had stayed in the twin bed alongside Mum. Five generations of us. We women: Lottie, Bessie, Gwen, Kate and Charlotte. Like a circle ending where it began. No ‘old lady’ smell here – just my Mum, her scent, her comfort. Soft pink flowers on the faded spreads that lasted too well.
4 generations of Landsberrys - Alf, Lottie nursing Kate, Bessy
So sorry Mumma. The pillow muffles me. So sorry. And suddenly I am heaving and turning and pressing my face into her scent into her pillow and sobbing with such grief that I can’t swallow it and it’s shaking me for selling my mother out. Judas. I kissed her at the nursing home that day – 15th May. Kissed her and said, “see you soon Mumma” and then went on holiday to Western Australia, came back and packed and sold all her goods. I’m ashamed. My heart is suddenly so painful in my chest that I have to hold it tight to stop it breaking.
5 November 2015
Mum keeps on saying, “So how old am I?”
She hardly believes me when I say “87.”
Today she asked “So how old are you?” ‘
“61,” I said.
“Oh dear, that’s old, isn’t it?”
And we look at each other and laugh.
Later, she looks at a photo of she and Dad and says “Well that’s me. I wonder who he is?”
“My Dad,” I said, “your husband.”
“Mmmm – oh well,” and she pops the photo back, grabs a jacket and off we go downstairs for a cuppa and a game of trivia.
5 December 2017
I’m strangely envious of Mum’s ability not to care. Increasingly the past is being gobbled up and for a long time there has been no future. Her mind is like a vegetable drainer with more and more perforations until one day all the holes will join up and there will no longer be any tangible substance.
So, at what stage in this process is my Mum no longer a person? Is there a cut-off point of ‘personhood’ I wonder?
I show Mum photos of our new farm and she says she’ll visit soon and that she’s almost finished with ‘this place’, the nursing home where she’s lived for 2½ years. Next moment she forgets.
Round and round we go, like a circle in a spiral like a wheel within a wheel…
16 December 2017
I visited Mum last week, walking into the dining room at breakfast time. As soon as she saw me her eyes danced, and she clapped her hands together. Her childlike joy is contagious. I find myself hugging her and laughing as she introduces me to a resident as her sister and then to a nurse as her father.
Is it just the luck of the draw that Mum is so pleasant, funny and mostly content? I imagine my journey with her would have been much more painful if her nature had changed. For now I grab these wonderfully fun and funny moments with Mum, hold them close and tuck them into my heart, because if Mum continues to live, kept alive by a pacemaker and a cocktail of medications, then little by little she will empty of herself until her light is dimmed, and one day I know that hollow eyes will gaze through me and that’s when I’ll sit and hold her hand and pull out the little memories of dancing eyes and laughter from the pocket near my heart.
3 February 2018
I was cleaning Mum’s room today and found 3 of her rings in the tumbler on the bathroom sink and the other ring in with melted butters from the dining room. I’ve taken the rings and will wear them for now, as I know how much she’d wanted her granddaughters to have them.
1 July 2018
Rob’s at the hairdressers in Lansdowne Gardens with Mum. “So how’s the water Gwen?” the hairdresser asks, to which Mum replies “Wet.” And smiles.
Rob:
For most of her 5½ years at Lansdowne Mum had a good life. There were many visits from Kate, David and me, along with our growing extended families. For my part, I was often there for meals with Mum, and singalongs, movies, a bit of television, games – whatever was going on when I visited. I know that David and Kate were the same.
As aged care homes go, Lansdowne was excellent. The staff were gentle and kind. They all loved Mum. She was always bright and happy, and got funnier in these later years. Her face continued to light up when any of us visited. Sometimes she didn’t know exactly who we were, but she knew we were special to her, and she’d hold our hands, and give us lot of hugs.
One time, at the end of a visit, I said my goodbyes and Mum said, “I’ll come down with you and see you off”. So we headed down in the lift, arm in arm. Then down the corridor towards the front gate. I said goodbye again and gave Mum a hug and a kiss. I said, “You go back upstairs now, and I’ll see you in a few days”. But she looked confused, and said, “Now, where do I go?”. I tried to explain, but I wasn’t making much headway. So, I said, “What about if I take you back upstairs”, and she smiled and said that would be good.
Back on the second floor, I said my goodbyes – again - and Mum said, “I think I’ll come down and see you off”, and I thought, hang on. Is this some sort of Marx Brothers skit? Am I going to be doing this for the next few hours? After much debate, I convinced Mum that it would be best if she stayed there, as it was a bit tricky getting back. She agreed, and as the elevator doors closed with me inside, she was smiling and waving and telling me she loved me.
And when I was on my own in the lift, I collapsed from the inside out and just cried and cried and cried. And that was a pattern that continued every time those lift doors separated Mum and me. With me bawling my eyes out and thinking, “This could be the absolute last moment I see my Mum alive”. And one day it was.
Mum lived on at Lansdowne at Neutral Bay until Friday the 13th November 2020 – it turns out Friday 13th is actually bad luck.
Gwen
To go to the next section of Gwen’s story click here.
To be re-directed to any other part of Gwen’s story, click on the applicable blue text below.
Part 1 -The Cooberang years (1928 to 1941)
Part 2 - Move to Sydney and the War years (1941 to 1945)
Part 3- First jobs, meeting Alf and religious differences (1945 to 1951)
Part 4 - Marriage and children (1951 to 1965)
Part 5 - Taking control and drifting apart (1965 to 1991)
Part 6 - Life after Dad (1991 to 2011)
Part 7 - The Alzheimer years (2011 to 2020)