Pictures of Laury and her mum

Laury’s story: ‘Mum became utterly lost in the fog of her own mind’

Jacquelyn was 57 when she was diagnosed with early-onset Alzheimer’s disease. Here, her daughter Laury describes the dementia journey in detail – from spotting the early signs, to the final stages – and shares what she’s learned from it.

I said goodbye to my mother in May this year. Although, of course, I had been saying goodbye to her long before the day her body finally caught up with her mind. 

My long goodbye with Mum began twelve years ago, with the prodromal signs of emerging Alzheimer’s disease. 

She was 50 when it started. I had been noticing for some time that she had become repetitive, and she'd started to suffer with anxiety, which is something I had never seen from my mum before. 

The early signs

In 2011, Mum told me that she was worried about her memory, she said that she was finding it increasingly difficult to remember things that had happened only moments before.

She asked me if I thought she might have Alzheimer’s. Her mother had it, and all her maternal aunts had it.

The family often joked that memory problems only seemed to run down the female line of our family. 

I knew nothing about dementia then, but I did a little research. I found that though it is common, this is usually post the age of 65. 

At that time, my mum was only 54, so I told her she was worrying about nothing, that it was probably stress, and that it would be highly unusual if she had dementia at her age because it was so rare. 

Receiving a dementia diagnosis

Fast forward three years and I sat in a neurologist’s office with her, holding her hand while the doctor delivered the news that she did indeed have early-onset Alzheimer’s disease. 

Mum cried and hugged me, but of course she had already known. Mum always knew best. 

Eventually the shock wore off and Mum, fiercely independent as she was, began to live around her diagnosis.

Much like you do in pregnancy, you make adaptations to meet new physical frailties and demands. 

For years, our lives became about Post-It notes and memory aids. And as more of her cognition began to slip away, we coped. 

We got her a bus pass after she had forgotten where she’d parked for the hundredth time.

I batch-cooked on my days off and took her food containers with days of the week written on, so she didn’t have to cook. We got labelled pill dispensers so she’d remember to take her medication. 

As dementia progressed

Even though we were living upside down and back to front, even though we had switched roles, as Mum became the child and I the parent, we thought we were, to some degree, winning.

But that is where dementia catches you off guard.

For so long, Mum managed. We found creative ways to live with her memory issues.

Ironically, it was almost as if we forgot she had it.

Because as a family we adapted, Mum’s dementia was the thing we lived around.

And that’s the thing. People with dementia find so many ways to live around their deficits, that for so long, though life is altered from what it once was, it is still essentially the same. Until the day that it isn’t. 

Mum plateaued for so many years, retaining her autonomy, that when the decline came, it floored me. It was as if we were meandering along and then, without warning, we just fell off a cliff.

Making the decision about a care home

Eventually the day came that I had to make the decision to put Mum in residential care.

She had become increasingly impaired to the point it was no longer safe for her to live at home. 

She had forgotten how to use the shower. Her oven had dust on it – she had forgotten how to use it, and most often would forget to eat. I put in a hot meals service to try and navigate this issue, but Mum would either be out when they delivered her food, or she would place the foil containers on the side and forget all about them. 

She would walk about constantly and then get lost. She took to withdrawing thousands of pounds from her bank account with her pin number written on the back of the card. I would finish work and have fifteen missed calls from her neighbours telling me that she, again, had been brought home by a member of the public, completely disorientated. 

The day I took Mum to the care home, I had to lie to get her there. 

I told her we were just popping to see a friend. When the door closed, I had to tell her she wouldn’t be leaving with me. 

It broke my heart, seeing her face. She looked so out of place, at least 20 years the junior of everyone else there. 

A new side to Alzheimer’s

From there, we embarked on a new journey. One that involved 24-hour care, daily medication rounds, and Mum becoming utterly lost in the fog of her own mind. 

This is what shocked me about Alzheimer’s. Until that point, I had just thought people with dementia were a bit forgetful. It didn’t sink in until that point the full horror show that watching a loved one with this cruel, insidious disease actually entailed.

In time, Mum forgot who I was, and would ask me when I went to see her if I had seen her daughter.

Sometimes she’d call me Mum. I came to learn that though she had no concept I was her daughter, she did know me to be familiar, and safe. 

As Mum stood on the precipice of the steep descent of final-stage Alzheimer’s, she became increasingly fearful and aggressive.

She began to hallucinate. She would crawl on her hands and knees under tables in search of the demons only she could see. And she would walk about, marching around day and night, in circuits around and around the care home, trying all the doors, babbling to herself. Most often I would spend my visits in tears that I tried not to let her see.

The final stages

In the months leading up to her death, the walking about stopped as she forgot how to walk. With increased stasis came pressure sores. 

She could no longer feed herself and would instead require feeding by staff. It was not just a case of forgetting what certain food were for. She could no longer work out how to eat, having no concept of what a knife or fork was even for. 

Her word-finding ability became non-existent. Words failed her. She no longer knew how to talk, and communication became more and more difficult. 

Eventually, as her body finally failed her, she became bed-bound, and I witnessed Alzheimer’s parting shot. She lost the ability to swallow. And when you can’t swallow, you can’t eat. 

I had no idea that Alzheimer’s would cause such physical devastation on my vibrant, youthful mum. Why would I? 

In some ways. I am thankful that I didn’t know the destination until I arrived at that place.

Saying goodbye

My mum died on 5th May 2019. She had just turned 62. 

I was with her when she exhaled for the final time, telling her I loved her, and that she wasn’t alone. Telling her how proud I was of her, and how brave she had been. 

I don’t know if she heard me, but I feel like she did, because she was squeezing my hand right until the end. 

We went the distance together, her and I, from my beginning to her ending, and there was no other place I would have been at that moment, then making sure that my courageous mum left this Earth knowing that she was loved. 

What I’ve learned on this journey

Alzheimer’s is a rollercoaster; there are surprises at every turn. Things you have no concept that you would ever know, it is the steepest of learning curves, delivering changes and challenges at every turn. 

But there is also something else, something that people embarking on this journey need to know. 

Some things are outside of our cognition, even when memory fails, selfhood remains.

That same independent spirit that my mother had when she was well, also manifested in dementia. In the way she marched around the nursing home. In the way she would get cross when the nurses tried to give her personal care. In the way she would nurse baby dolls with such care and attention. 

Always, always, mum was a free spirit. Always, she was a mother, and that didn’t stop with the onset of Alzheimer’s, because some things are instinctive. 

Some things are so deeply engrained into us that they are beyond the realms of mental capacity, or cognitive ability.

People like to pathologise dementia. They talk about how the person ‘dies’ before they are actually dead. And in some ways that is true, the coherent version of the person you knew morphs into someone different. 

But this different person, the person they become, is still woven together with the essence of who they were, their core is still there. 

Having seen my mother through every stage of the condition that eventually claimed her life, I know for certain that her selfhood remained. 

Even when words failed her. Even when mobility was lost. Even when the world made less and less sense to her.

She was still Jacquelyn. Still Mum. Brave, fiery, resilient Mum. 

Before Mum lost the ability to talk, I was visiting her one day and told her I loved her, she whispered back “me love you too. You’re my little girl”. And that is what is left when all else begins to fade. Love. Love is what remains. 

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Laury my heart breaks for you. Thank you for sharing your story. Here’s my Mums story. My Mums name is Olwen and she is 95 years old. If she makes it she will be 96 in April. Mum was a kind loving generous lady. She lived by herself for over 30 years after my dad passed away at the age of 62 when Mum was 60. He was the love of her life. She was incredibly independent but when Covid struck we moved her in with me and my husband because we feared for what might happen if she caught it. We had two great years. No signs of what was to come. I have two brothers who both live on the opposite side of Australia from me so I’m all my mum has. Early in 2022 she started to forget things, she had hallucinations and could hear voices talking to her. She became very paranoid. Convinced people were trying to kill her. People she previously trusted. I couldn’t believe how quickly it developed but at least it was only months for us, not years like most people, so I guess we’ve been lucky. I don’t feel very lucky having watched my mum go through this. Its such an undignified tormented way to end her life. About six months ago she went into a nursing home and she hates being there but I couldn’t look after her any longer at home. She would get out of the house and wander, sometimes in the middle of the night. She stopped eating, drinking and was refusing to take her medication. She trusted no one and her personality changed from the kind loving mum she’s always been to a total stranger. She became a danger to herself. It was her worst fear to go into a home and I feel so guilty that I couldn’t look after her. In the home she has frequently wandered round trying doors to find an escape route. Most of the time she won’t eat, drink or take medication convinced she’s being poisoned. This must be the worst kind of torment for her. She constantly thinks someone is trying to kill her. She talks about the ‘bees’ that people put in her room. She asks me every time I see her if I can take her home. She seems to know who I am most of the time but sometimes thinks I’m her sister. She also now thinks her own parents are still alive. I take my iPad into the home and when she gets agitated I play music for her and show her photos to try and distract her from the awful thoughts in her mind. Sometimes it helps and other times it makes no difference. Her organs have started to shut down and now she spends a lot of the time sleeping. I sit by her side and hold her hand so she knows she’s not alone. The staff at the home are kind, compassionate people and without their help I don’t think I would cope. I know she’s coming to the end of her life and I hope to be there for her at the end but my heart has been breaking for months now and I don’t know how I’m going to deal with this. I love my mum so much and I hope she knows that. Life without her in it is unthinkable. I don’t know how long she will go on like this. I’m torn between selfishly wanting her to live but knowing deep down that it will be a blessing for her when she passes away. At least then she will have some peace and I know my dad and her parents will be waiting for her. Hopefully science will come up with something for this cruel hideous disease. I know it’s too late for my mum but hopefully they find something so that other people and their family don’t have to go through what my mum and my family is going through. To all of your readers I hope you have good support and that your journey isn’t too difficult. Take every offer of support. You are going to need it. I don’t want to lose my mum but in reality I think I lost her months ago. I try to spend as much time as I can with her and will do so until the end so she will know she wasn’t alone and hopefully she will know how much I love her.

Hello Linda,

We're very sorry to hear about your mum, that sounds like a very difficult situation to be in. Thank you for sharing your story.

If you need support, we'd suggest contacting Dementia Australia. They have a national dementia helpline that offers support and advice to people affected by dementia. You can find out more about the helpline on their website:

We hope this helps, Linda. Wishing you all the best.

Alzheimer's Society website team

I almost wished I had not "found you" but here I am and it scares the hell out of me. In a couple of months I'll turn 81 and was diagnosed w/dementia some 4 months ago. I am doing a slew of meds and if I didn't know any better I'd easily "forgotten it". SO far so good, still do almost everything such as driving, sports, walking the dogs, swimming, I believe all the right "things". However, I know this is buying time (as we all are) but to know there's no other road to travel and for some time it'll be worse for my husband and children. I AM a very independent person and am not looking forward to my/our journey. Thanks for "listening"!
My mum died in June this year. Alzheimer’s had got to her but was not, ultimately, the reason why she died. And, although it hollowed her out, there was always little moments when she was mum. Sometimes, I was a stranger to her, which must’ve so frightening to her. Not to me. I knew it was just the disease, and would never, ever take it personally when she didn’t know me. She couldn’t help it. That was never her fault. But it was hard looking after her. Sometimes I couldn’t get my head round why she couldn’t be okay, especially when I had just experienced a bit of clarity with her. It’s like a see-saw, so up and down, and it plays tricks on your mind and emotions when you get snippets of clarity then episodes of confusion. You need to go with the flow and be quite laid back. Support is key. As a carer, get all the support you can, because it will make you a better carer for your loved one. And breathe. And try not to beat yourself up and expect too much of yourself. We’re all human, and Alzheimer’s is a tough gig. Good luck to you. It will be fine. X
I’m going down this road now with a Loved One. You just gave me Hope & Inspiration to take this journey, holding onto past & present memories. Your journey with your Mum was Beautiful 🌹 Bobbie Jean 🌹
This is exactly my situation today as If this were writing this.... mum is 67 had this for 10 years. She can't swallow and has a line in for fluids .... she's in there I can tell but this disease is devastating. All I want is peace for her but instead I have to stand on the side lines and watch her suffer .. your words have helped me I will tell her how proud I am of her and how brave she is when I see her and hope I can be there at the end to make her feel totally loved xx

It was only my beautiful mum and myself, she was a single mother and I an only child. I was 23 years old when my mum was diagnosed with Alzhiemer mum was 59, funny how family and friends disappeared from our lives as if my mum had a disease, mum died when she was 67 years old. I wish I had told her how much I loved her and how beautiful and caring hard working mum she was I never needed for anything.
The saddest part of this is in the 1990 people didn't understand that my beautiful mum was still Lily. Xxx

Thank you so much for your honest detail xx I am dealing with a similar thing knowing my mam, my rock started with symptoms 23 years ago, aged 49

My beautiful mom passed away December aged 57 from Alzheimer’s. We cared for mom at home and I was with her when she took her last breath. It’s the hardest journey ever and I still can’t believe she’s actually gone . My Nan also died from dementia which was my moms mom. I have a little girl and it plays on my mind everyday I would never want her to go through seeing me with this awful disease.

My mum is at end of life she was diagnosed when I was pregnant and my little girl is now 3 and I too worry about it happening to me. It’s so hard to face the fact she will never see her grow and I have bought my first house last month and she never got to see me achieve that on my own. It’s such a horrible disease and if I didn’t have my baby I don’t know where I’d be right now.

It’s a Truely awful disease. I’m writing this as can’t sleep as the thoughts running through my head drive me insane. We have a family gene for early onset Alzheimer’s and my cousin, who was like my older sister, who will be 41 next month might not be here long enough to celebrate that birthday. It’s fast and aggressive and they die so young. She will be my 3rd cousin to die of this horrible gene and none of them reached 45. I’m heartbroken to say the least. I just now fear for their childrens future. There’s no light at the end of this tunnel.

Jem, we'd strongly recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen to your situation, and provide specific information, advice and support.

You can find more details about the support line (including opening hours) here:

Please remember you are not alone and we are here to support you and your family.

Alzheimer's Society website team

My mother has Alzheimer's, she is is a lofty 84, still lives in her home with carers and family, what the future holds we can't say for certain but this story of Jocelyn's last year's paints a familiar pattern to mum's now, we are debating within family where her future should lie as she has fallen a few times which is very worrying, a care home would be a last resort as she is dead against them but the next few months will decide her future.

Hi Kevin,

Thanks for your comment. We're sorry to hear about your mum's falls. It sounds like a difficult and stressful situation for you and your family. Please know that you aren't alone, and we are here for you.

We'd recommend calling our Dementia Connect support line on 0333 150 3456 and speaking with one of our dementia advisers. They can listen to your situation in more detail, and give specific information and support. More details about the support line (including Christmas opening hours) are available here:

You might also find it useful to speak to other people who are going through similar situations in our online community, Talking Point. Here, carers and other people affected by dementia share their experiences and offer support and advice. You can read more about the community, or register for free here:…

We hope this helps, Kevin. Please do call our support line if you need to speak with an adviser.

Alzheimer's Society blog team

I have Alzheimer’s and vascular Dementia! I also have osteoarthritis/0steoperosis which is worse than Alzheimers to me at present!

Hi Jenny my husband has just been diagnosed with this mixed dementia, young person dementia. Would love to have a chat sometime

I'm reading your story with tears running down my face I'm going through the same with my mum she's in last stage vascular dementia and it breaks my heart to see her fading each day I talk to her and hold her hand stroke her hair to let her know I'm there she holds my hand tight and I know she's in there somewhere I know I won't have her much longer but the time I have with her is precious its a cruel disease no one should have to go through it yet alone see the devastation it causes my heart goes out to everyone who at this moment in time is going through the same situation

Michelle, please know that we are here for you. We have trained dementia advisers available via our support line on 0333 150 3456. They can listen to you and provide specific support, advice and information. More details about the support line, including opening hours, are here:

You might also benefit from joining our online community, Talking Point, where carers and other people affected by dementia can share their experiences and receive peer support. It's free to join, and open day or night:…

Please do call our support line if you need us, Michelle.

Alzheimer's Society blog team

Reading your story I see a lot of similarities my mum is currently going through. My dad passed away two years ago and mum’s gone downhill from then, but everyone has noticed her memory decline, I’m getting phone calls from friends and family that are so concerned for her. but if I or anyone mentions the subject Mum gets angry and upset. I made an appointment and she fell out with me( me and mum are so close we never fall out). Her mum had it and I think the reason she’s so hostile about it is that it scares her so much. Don’t know what to do, I’m afraid something will happen to her before she lets me intercept and get her help. Need advice.

Hi Bernadette,

Thanks for your comment and sorry to hear about your mum.

For specific advice on your situation, we'd recommend calling our Dementia Connect support line on 0333 150 3456, where you can speak to one of our trained dementia advisers who can offer information and support. More details about the support line (including opening hours) are available here:

You might also benefit from joining our online community, Talking Point, where carers and other people affected by dementia can share their experiences and receive peer support. This could be a great place for you to get helpful suggestions from other people who have been in similar situations:…

We also have a page on 'How to offer help to someone with dementia who doesn't want it', which you might find useful. You can read it here:…

I hope this is helpful, Bernadette. Please do call the support line for more advice on your specific situation.

Alzheimer's Society blog team

I am so sorry to read this and for your loss. I am currently going through the same and have no idea how to cope. Help is so hard to get as you keep hitting brick walls. My mum is constantly walking up and down, she thinks she is being locked in all the time, I barely get a minute to myself at all and have numerous health issues of my own to contend with too. I have read and read but still dont know how to deal with it. It certainly is a cruel disease and the most undignified thing ever. ATB.

Keith, It's a terrible story of anxiousness, pain and loss that is told here. I lost my Mum 3 years ago to alzheimers. My Dad looked after my Mum and to a great extent, hid how poorly she was from the family as we all lived remotely. It was only when his won health went downhill and he went into hospital and very soon after passed away, that we all realised how far along the alzheimers journey Mum really was. I'm in pain every day thinking about my Dad and how he felt unable to look after his own health. Please, seek help so that your own health doesn't worsen. You can ask your GP for a referral to a memory clinic or to social work who should be able to provide some respite and support. All the best.

I am so sorry you lost your Mum. This is brilliant writing. Thank you so much for sharing You & Yours Mums journey. It is so close in every way to what I am too experiencing and therefore has and will continue to give me the knowledge that no one else will give me. And for this I can’t thank you enough.