On May 27, my world as I knew it came crashing down. With the cry “Craig, I don’t know who I am!” my mother’s instant dementia was announced as she awoke that day.
For most of the population, even those in the medical profession, this sudden arrival of dementia will make no sense. It still doesn’t to me.
Dementia is meant to be a progressive disease. For those who know Mum, Noreen Hawkins, or who interact with her regularly, seeing her now, just over a month since their last interaction, would leave them dumbfounded.
Because within two weeks of waking up with those words, Mum reached the advanced stages of Lewy Body Dementia. In charged terrifying hallucinations, morbid fears, crazed delusions, Capgras Syndrome (the belief that myself and my brothers Grant and Darren are deceased and those visiting are imposters), and the refusal to eat or drink or move.
And depression. Deep, deep depression with apathy.
My initial fear on May 27 was a stroke.
There had been no previous symptoms of dementia, or no masking of symptoms. The only signs in retrospect were in the days prior – confusion about messy writing on her calendar, forgetting about an appointment that I had, and my sister in law Val reported that Mum was shivering/shaking on a day out with them the week before.
All of that only adds ups in the context of what followed. At maximum, her lead in period, if those events constituted that, were only a week.
Was this a case of being one in a million? Mum did cognitive tests with the GP as part of her regular check ups. When I informed the GP of her diagnosis she stated, “but she didn’t have dementia. You don’t get it like that.”
Apparently you can. It’s rare, but Lewy Body can have a more rapid onset. In reality, there is nothing in the literature quite like the instant condition that has befallen Mum.
Mind you, it took nearly six weeks for the diagnosis. The ambulance trip to the hospital on May 27 resulted in being sent home a few hours later with a diagnosis of delirium and a script for antibiotics. I’d navigated delirium with my father, though he contracted it in hospital, so whilst the 24 hour a day vigilance was a challenge, my worry levels were alleviated by the verdict.
The week at home with the delirium diagnosis was not overly traumatic. There was confusion and anxiety, but nothing like what was about to unfold in hospital. Nonetheless, that week at home without improvement resulted in a return to emergency, admission to hospital and a rapid descent.
The escalation of symptoms was unbelievable. If it was like a switch was flicked on May 27, then the days after her admission were like pedal to the metal in her journey to hell. In fact, hallucinations about hell were the first to arrive.
On one particular day after less than two weeks in hospital, Mum confronted Grant, Val and myself with behaviour that was like a scene from the exorcist. My loving, sweet, gentle, caring mother had completely vanished.
There was a battery of tests to confirm delirium or something else – encephalitis, dementia, psychosis, all came up negative. EEGs, x-rays, CT scans, lumbar punctures, blood tests, you name it, it was done. We were grateful for the depth of investigations.
Finally, a PET scan provided the doctors with enough evidence (a suggestion of Lewy Bodies) for their ultimate clinical diagnosis.
Mum and Dad showing their support during Covid
Last Wednesday was a day I’ll never forget. It started so positively, perhaps it was the best visit I’d had with her over that time. We hadn’t had genuine conversations since her admission. Truthfully, there were days when she refused to talk to me at all.
On this day she accepted me as Craig and told me repeatedly how much she loved me. We talked about her ticket to an October concert by Hindley Street Country Club. She requested their cover of “September” to listen to on YouTube. The song was playing as the doctor showed up bedside.
The news was quite clinically delivered. There was no cure. She would be most unlikely to come home. A nursing home would be the outcome. I was distraught. I looked at Mum as the doctor declared that she wouldn’t understand it. The doctor offered to ring my brothers but I said I would do so. When the doctor briefly left the bedside, mum grabbed my hand and said, “Oh Craig, I’m so sorry to do this to you.” She understood something!
Only from that day did Mum begin being medicated. Up till then, using specific medication to treat the symptoms was too risky.
As a consequence, Mum had endured five weeks of nothing but fear, anxiety, terror, wild hallucinations, morbid delusions. Some days were spent refusing to speak. Every day she refused to eat or drink. She ripped out cannulas intended to provide much needed liquids. She yelped when touched.
On many days the appearance of “look-a-like” imposter Craig was so terrifying for her that I had to sit in a corridor alcove whilst others visited.
Over the four days after medication commenced, Mum started talking. She initiated conversations, and strangely formed new memories, something that I didn’t expect, recalling conversations from the day before and events that had happened during her time in hospital. On the Saturday morning she awoke saying good morning to everyone and requested a cup of coffee.
But delusions remained. Barely eating or drinking remained. And she wouldn’t get out of bed.
We’d been told to expect fluctuations. The four days of Mum slowly re-emerging were in all likelihood exactly that, even though each of those four days had built on the day before. We’d started laughing. Especially when Mum saw a nurse walk quickly out of the room on Saturday and declared “I wish I could walk out of this room as quick as that!”
The following three days confirmed the fluctuation and a new concern emerged – suicidal ideations. She requested pills or an injection to die. Mum also developed a UTI from a catheter and believed that the medical care around that was a sexual assault. Antibiotics were added to the medications that she would fight against each day.
Probably the toughest thing to face with a dementia diagnosis is that it sometimes feels like the medical staff don’t want you to have the slightest shred of hope. Maybe that is my purely emotional response to the situation. Is it possible to understand the realities that you see in each visit but still have hope in your heart and to advocate and fight for a loved one? I think that’s both possible and the only way to deal with this.
I have asked the doctors for a further investigation into the potential for schizophrenia especially given the sudden onset, rapid mind-blowing degeneration and the suicidal thoughts and delusions. It looks unlikely as the first response to my request is that they ruled that out earlier in their investigations. They are ready to move into discharge planning. Am I being too emotional to accept the obvious diagnosis?
Right now is a grieving period for me. Part of that involves resignation and endless tears, the other side of that is the disbelief that it’s happening, and the hope that the diagnosis is wrong. Those who know my history of being a carer for Mum and Dad know of the numerous medical errors made over that time that required my advocacy and fight. On every occasion that I had doubts, and fought, I was proven correct.
In no way will I be critical of Mum’s care and the investigations. It’s simply impossible to get my head around a person being normal one day, and virtually a shell of themselves the next. Or how something meant to be a progressive condition can be completely traversed to the advanced stages within a couple of weeks.
But I’ve also spent countless hours on Dementia Australia’s website, watched videos, spoken to their helpline, successfully used recommendations for how to navigate Capgras Syndrome moments, and booked counselling time for myself. The research and self education across multiple websites is now part of my daily ritual.
Where does all of this leave me and The Cumberland Throw.
For the last nine years of my life I have lived the life of a “carer”. Countless people in the community do so. Most have more challenging circumstances than me.
My elderly parents have been my responsibility. Football, the Eels, had always been a passion. During the last decade, Parra and The Cumberland Throw, became my respite.
I gave up my career as a teacher to be a carer, but I never saw this as a sacrifice. My parents were the most generous, self-sacrificing people in the world. Dad, in particular, had high needs. All were physical. It is both confronting and yet deeply bonding to have to assist a parent with the most basic daily physical needs like dressing, shaving, and toileting.
Back in 2023, we lost Dad. He’d had a long life, albeit that the last decade or so of it saw him housebound. In his final year or two he had undiagnosed Dementia. He reported seeing visions of young children standing around in the room. He wasn’t frightened and his behaviour was not impacted so I made the decision to not add another concern to his long list of conditions.
Dad’s passing resulted in me being able to care for Mum in different ways. More outings were had, including days at lower grade and junior reps football. She too loves Parra.
Osteoporosis had long made Mum’s life challenging. One simple fall led to a shattered pelvis. A slip in the kitchen resulted in a double broken jaw and eight busted ribs. In between there were stress fractures and other simple breaks. But she never let such incidents hold her back.
It’s important for me to make an acknowledgement.
The genuine sacrifice during my time as a carer has not come from me but rather from “Yoko”, Chanelle. Across these years she’s stood by me as our relationship never truly extended beyond boyfriend and girlfriend. She has effectively had to live separately from me due to the proximity I needed to keep to my parents at night.
Holidays were taken on her own, mostly back visiting her parents in New Zealand. Apart from a couple of overnight stays away from home via the assistance of my sister in law Val staying with Mum and Dad, Chanelle’s longest time away with me was a four day trip to the central coast last year, and we took Mum with us.
But above all else, Chanelle has forgiven me for my selfishness and for not making her a decision maker in this journey. I stopped teaching without consultation, and made financial decisions without speaking with her. All the while her own dreams slipped by, and my precious little spare time went into TCT.
I became very good at juggling TCT time around my role as a carer. Tough days, weeks or months might mean being at home 24/7, but “good” periods allowed me to duck out for an hour or two a few days a week because I was never more than fifteen minutes from home. I rarely missed a home game. Watched training. My limitation was the inability to travel to most away games.
Podcasts would be recorded whilst my parents were settled watching tv. A lot of writing or editing would be done in bed late at night or in the early hours of the morning. This post is an example of that. Time was found for phone calls. Perhaps you are getting the picture of how I made things work, or rather how there was one person who was not the subject of my care.
In essence, my decision to be a carer came at more of a cost to Chanelle than myself.
She too is suffering from her own grief about Mum. She too has cared for Mum. She too loves Mum. She too has been in tears by Mum’s bedside. The presence of Chanelle and my sister in law Val has now been critical as Mum trusts them and has started to once more become chatterbox Noreen with them at her side.
And last Saturday, whilst I spent the day at Westmead, Chanelle had to spend the day at work, catching up on the admin time she had missed due to her time at Mum’s bedside. Then when that was done, she surprised me by organising TCT merchandise give-aways for our Watch Party at Parra Leagues on July 25.
In spite of everything, she not only wants me to press ahead with scheduled events, she’s taking the lead in organising them.
Most TCT readers will have noticed that my writing on the site has all but disappeared. For the time being that won’t change. John (Forty) is currently carrying the load that I cannot. His support and friendship has been incredible. I’ll do my best with podcasts. I’ll make club appearances. This is all very raw right now.
I am blessed with amazing friends. Those who continue to reach out to me. Those who immediately began their own research into Lewy Body Dementia the moment that they found out the news. Many are footy mates. It is true that when you are a member of a community, like Parra Leagues, that you have people who support you. I was reminded of that in a phone call this morning. Thank you Mark. The same can be said of Chanelle’s friends who have made Mum part of their lives. I love you all.
For the time being we will all continue to navigate each day as it arrives and plan what we can plan.
If you’ve read all of this, I thank you. If it’s helped with any awareness of dementia, or challenged a belief, then I feel like this post has achieved something.
Mum forever!
Sixties
Very sorry to hear the news
Thanks Macca
Take care – thanks for sharing.
Appreciate that Martin
Thank you for sharing this Sixties. My late Aunt had dementia in her late stages, and it must have been bad because the extended family was asked it was better not to visit, and I can understand from your description of events, why we were told so.
I have never thought it could be instant onset though, that must have been extremely difficult to understand what was happening
Hoping all the best for your mum and family, and hope the very small improvements continue
Thanks Chiefy. Yes I’ve had to ask friends and relatives to not visit because her condition had been too bad. Her combination of symptoms is baffling. They all fall under the Lewy Body Umbrella. It’s just that she has the full range at their worst, including rare ones.
Oh dear. We went through this a few years back with my wife’s parents. It’s difficult to describe or understand until you see it first hand. I wish I could say that things will get better but, as you know, they won’t.
I sincerely hope you and your lovely Mum get some relief soon.
Thanks Mark. I just wish that her delusions weren’t so terror filled.
Such a tragic and moving account, a blend of love and sadness. As a TCT reader, my best wishes to your Mum and to you and your family
Thanks for reading and replying David
So sorry to read about this Craig.
Sending my love to you and your family.
I have missed seeing you this season, thanks for always putting your heart and soul into all your content for us fans.
Wishing you all the best.
Fellas, we’ve missed seeing you two also. You’re like the younger and thinner versions of John and I. We love you two blokes. Thanks for this message.
Prayers for strength, grace and healing for you, your mum and entire support network mate.
Sharing such a personal story is hard, but I feel more knowledgeable on the subject than I did 5mins ago, and I have a relative with dementia, albeit not as fast paced as your mum.
Your love and care cannot be undersold, know it’s appreciated by her even if some days she can’t show or say it.
I wish you and your mum all the very best
Thanks Brad. The fact that you feel that way makes writing the post worthwhile.
Thank you so much for sharing this deeply moving and personal story — my heart goes out to you and your family. I can truly relate, as I’ve experienced something very similar with my grandfather and witnessed the emotional toll it took on my mum. Seeing someone you love fade so rapidly and unexpectedly is both devastating and surreal, and I can understand the whirlwind of confusion, grief, and helplessness you’re facing. Your courage to advocate, to question, and to still hold onto hope amid such darkness is incredibly powerful. Please know you’re not alone — your strength, vulnerability, and love for your mum shine through every word.
Thank you Chris. Your words about it being devastating and surreal and that feeling of helplessness ring so true.
Incredibly beautiful story you’ve written and one I can relate with (my sister) the most important thing for you to do now is be with your family and Tct can take a back seat till you are ready and able to focus on that again, to me it highlights why we should all try and be nicer to each other as we don’t know what’s going on in peoples lives , rest asst your family will be in my family’s prayers tonight
Such kind words Ivan. Thank you.
An incredible post filled with love. Beautiful, beautiful love. Much respect Craig.
Thanks Shelley. Hopefully see you soon.
Take care, mate. Incredibly tough time but you have done well. Proud of you.
Thanks for that mate. It’s still very raw.
Thanks Craig for your openness on this issue.
I did a fantastic, free course through Tasmania Uni. Well worth it
Appreciate the recommendation Paul
It’s such a difficult time, we have been through an experience of dementia with my son’s father in law, ex Parra first grade hooker , Chris Coy. The support he received from the Blue avd Gold Alliance with visits and outings was very beneficial.
Things moved on and he’s now in full time care. Never be shy of asking for help and especially taking to friends when needed, no matter how long they have known you, they are all there for you.
The future is tough but I’m sure you and Chanelle will navigate as you sheets have, with care and compassion.
Talk soon and see you shortly
Navigate as you always have 🤔
Cheers mate and appreciate how you’ve always checked in. A couple of years ago I had tears in my eyes as Chris Coy came to life as he joined in the team song at the BGA drinks. I never for one moment expected to see this happen with Mum.
Craig, when my mum was diagnosed with terminal cancer we set up our lounge room like a hospital ward and gave her the best care we could. At a low point I asked my wife what should I do, she said simply and unforgettably just make sure she knows she was a good mum. Your actions speak for themselves, total empathy and respect here.
BDon, what an amazing thing you did. I hope with everything inside me that she understands what she has meant to us all.
Thinking of you Craig. Mum developed dementia in her later years (although not as severe as your mum obviously), so I have some idea of what you are going through. You were looking forward to getting some answers from the scans a couple of days after I spoke to you at Kellyville, but they obviously weren’t what you hoped for.
Take care.
Hi Mal. It was good to meet and talk that day. Unfortunately it was the worst possible outcome from the scans. Still trying to get my head around it all.
Sixties,
My thoughts and prayers are with you and your wider family. It must have been difficult to share but hopefully in doing so and reading these responses it takes a little weight off your shoulders and brings some modicum of respite.
The responses have indeed meant a lot to me Namrebo. Thank you for yours.
I’ve never met you. My heart goes out to you. Lots of this business of living a life as a human being ain’t no fun. It’s why it’s important to embrace fully those things that give us joy, like following a football team. All best.
Wise words Noel. Thank you.
Huge respect for looking after your parents and keeping tct going with the support of forty and yoko.
You guys bring a lot of joy to eels fans and thanks for sharing the personal stuff you are going through.
Good luck and stay strong.
Thanks Tony. Forty is a terrific mate and a rock. Yoko deserves a medal and definitely better than I’ve given her.
Stay strong, your parents are lucky to have you.
Thanks Johnny. Myself and my brothers were always the lucky ones.
They say “growing old is a privilege “, sometimes it is not. Strength and prayers i send to you and yours mate
Jonny, it can be so confronting to spend every day in the older persons ward.
Craig
we don’t know each other and I only know you through TCT bu this broke my heart mate. My cousin ared for both her parents through to the end and basically have her normal life up to do it. My mum fought it for 7 years and my dad about 9. It is so hard to see loved ones go through this because you lose them a long time before they leave their body. My mother-in-law suffered it a couple of years before she passed and my oldest sister has been diagnosed with early onset recently. my oldest brother was diagnosed with terminal pancreatic cancer 2 years ago so .y most hated words are dementia and cancer. There’s no magic words or easy fix but the only advice is don’t let it take over your life completely.try and get professional help with care and take some time for yourself and your partner.
wishing you all the best on your hard road you are on and sending blessings for you , your .um and all your family
David, that was quite the battle your family has faced. I’m really not sure what lies ahead. We want to bring mum home but her refusal to eat or drink or take medication, and her semi regular rejection of me and belief I’m an imposter make that option so close to impossible. I define myself as a carer. Now?
I know it’s easy to write, but if a responsibility is going to make your life worse without improving anything for your mother don’t do it. That’s not something to feel guilty about, it’s simply rational. Finding the emotion switch and turning it to off is sometimes the only way to react to some of what life throws up. As a dear friend advised me when my father was dying, don’t forget to have compassion for yourself.
sometimes you need to take a step back think about yourself and leave things up to the professionals
If you do don’t try not to feel guilty ( I know easier said than done ) and don’t let anyoneake you feel guilty or inadequate . sorry I can’t give you a lot of advice because every case is different . just remember no matter what that woman that loves you and raised you is in there and if you’re lucky aometim she’ll come back to you for a brief moment and be gone again
please take care and don’t be scared to ask for help
I’m so terribly sorry to hear of your mum’s ordeal. Thoughts and prayers for you and your family. Stay strong mate.
Mark
Thanks Mark. Hope to see you soon mate.
Hi Craig,
You are a courageous, kind, decent, and generous human being and son. Thank you for sharing your story.
My wish for you, your mum and family is peace and strength, and of course my prayers. If you need anything reach out.
Take care
Adam
Thanks Adam. Such kind and generous words and wishes. Much appreciated.
Thanks you Craig for that absolutely brilliantly written, and heartfelt post. It just goes to show people have no way of knowing the struggles and sacrifices people are making. Your sacrifices for TCT over the years has always astounded me, and now I have to come to terms with now knowing how very much you sacrificed for us…
Please let us contribute more by patreon to support the great work both you and John do.
An\y thing at all I can to do to help, please don’t hesitate to ask.
Jason
Thanks Jason. You have always been so generous with your kind words about TCT. I’m not sure where things will go with TCT. For now, I’ll press ahead with the club appearances. Hope to see you there.
60s such sad news .your mum deserves a dignified final chapter.you should be proud of yourself as your mum and your dad in his battles are of you. It’s great to see you and your partner have a loyal network of family and friends. Hang in there mate
Thanks Tanky. You’re right. Mum, well actually everyone, deserves a more dignified final chapter. I just wish there was some way, some medication, that could take away her terrifying delusions.
You, your mum and the family will be in our prayers Craig.
Thanks for the way you have served us …. kinda in this non-footy way.
Thanks mate. Glad I got to meet you earlier this year. Thanks for your prayers.
Take care mate
Thank you Darin.
Hope u and family r doing well champ, our prayers r with u, been through the exact same experience with my mum , I still can’t believe you’re doing all the podcast still with 40/20 I’ve only met you once at Kellyville and you are a very nice to talk to albeit it was just footy talk looking forward to having a beer with you one day cheers kind regards, Ray Zammit
Thanks for your kind words Ray. Yes we’ll do that. Come down to our watch party on July 25 at Parra Leagues. Mum loved Canadian Club, so we’ll have one of those in her honour.
Sixties, my heart goes out to you. I can only imagine the pain you and your family are going through right now. Reading your beautiful story brought me to tears. Your incredible storytelling makes me feel like I lived it with you even though I don’t know you personally. You never know how quickly your loved ones can be snatched away from you.
Take care
Hey Sixties
I started reading this today and only finished now.
Thanks for the background here and also the insight to your family and relationships.
Very admirable to share in this forum.
We can only assume what your mum and your family are all going through with varied emotions / thoughts and feelings.
I personally hope she can be at some ease as possible as does Courtney.
My mum went through another debilitating illness of Parkinson’s for about 10 yrs or more and it was very sad to see and witness.
Thoughts are with you mate and we wish you all the strength and more; keep up the warm chats with her and stories.
Cheers Milo. I remember that yours was a tough journey with your Mum. Thank you for reaching out as you have been. Sorry I haven’t been in a position to catch up.
Thanks Adrian. It makes you think about every moment you might have wasted. Or wrong words you might have said. I remember being a bit flippant when mum had trouble with the messy calendar. Little did I realise it was one of the only signs of what was to quickly follow.
My thoughts go out to you, Sixties.
I have finished my journey with mum in March. Hers was a quick onset following a fall. It’s not an easy journey but you must take care of yourself. My journey with mum took eight years.
Take time to enjoy family, friends and interests.
I visited regularly as I had retired from teaching but made certain that I had time with others and followed my interests. I had mum time and me time. Me time is important.
I visited with the expectation that I’d not be recognised and enjoyed the times I was, though this recognition decreased with the passing of time.
Talk to others and above all, look after yourself, brother.
Thanks for sharing your wisdom about this journey Darryl. What I find confronting, outside of Mum’s painful terror, is her rejection of me as an imposter. I “look so much like Craig. How did they find someone like that.”
Jason Ryles really is right. We all feel for you 60s. And it’s all because of that badge.
Heres to the team we all love putting a smile on your face come Sunday – win lose or draw.
Thanks Luke. Yes it is a community.
All the best 60s to you and the family. My dad has dementia, it’s no fun at all and hard on everyone around him, not least of which is himself.
Mick, I’m so sorry you are going through this too. I’m honestly traumatised watching Mum’s daily terror. It’s a full on schizophrenia behaviour with suicidal wishes. And in not being able to take her own life quickly she’s responded by starving herself to death.
Take care of yourself, Craig. I’m truly sorry you’re going through such a tough time. I often send you Parra-related stuff on Instagram, but just know—if you ever need anything, I’m only a message away.
Wishing you strength.
God bless.
I appreciate that message Galaga and your regular contributions to chat on our live pods.
I’m really sorry to hear about your situation. I sincerely wish you strength and happiness ahead. Hopefully, our boys will give you something to smile about on Sunday. This has given me a lot of perspective, and again shows that family comes first.
Take care, 60’s.
Thank you Avenger. A win will be a much needed distraction.
Thank you Sixties for your deeply touching story. None of us know what’s around the corner but to be able to write so poignanly about your family’s own recent experiences with your lovely Mum is a gift to all of us.
Stay strong and hugs to Mum from us.
I delivered that hug on Friday arvo mate. Thanks.
Hi Craig,
As a person getting older I am confronted by the potential of this terrible malady.
I am not sure what I can say to comfort you, but I will say you have all my admiration for what you have done to ease the burden that your mother now carries and you and your family with her.
Your a special person, you always have been and I therefore wish you all the miracles in the world.
You still have many friends on the one eyed eel site and whilst it is not my role or right to speak for them, I do know than many will share these thoughts with you on this one.
Hang in there my friend and don’t give up your role on TCT as those guys (you and the other founders) will always be there waiting for you regardless.
God Bless
Cheers Poppa. Always appreciated your support mate.
All the best in these tough times 60’s. Don’t forget but to also look after yourself!
Thanks for your best wishes Joshua
Thanks for sharing Sixties. The TCT community will always have your back mate.
Our TCT community has always been so supportive. Thanks Lenno
Craig,
Unfortunately we have had personal experience with dementia. Whilst ours was more progressive, there is nothing worse than seeing a person, able of body but with a mind that slips away.
Whilst we find better ways to keep our physical body in better shape, we remain somewhat helpless in regards our mind.
It’s a hard road but the very best to your family in the future.
Thanks for sharing Sixties. That was a pretty raw read, as my aunt recently passed away from the same diagnosis after a long battle to even get diagnosed. She went through many of the same symptoms you described, and she also ultimately had to go into nursing care.
Look after yourself and stay close to your other family and friends. I’m sure they’ll help you through the tough times ahead.