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. 

Dementia Connect support line
Our dementia advisers are here for you.

25 comments

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Thank you I’m going though time now today I feel like a broken women crying angry week your story helped me thanks

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Thank you for this. My Mum passed away last week from this most disgusting of diseases after at least 10 years of suffering. I miss her now, and will miss her always, she was such a loving Mum. This post has helped as I am trying to find the right memories to reflect on for her eulogy on Monday

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Oh Laury I’m in absolute tears here reading you’re story about your beautiful mum. The last few weeks I’m finding myself researching about Dementia as I’m so worried about my own lovely mum.
She’s 67 and I’ve noticed changes since last Christmas in her memory but the last couple of weeks she has definitely got worse. I’ve tried suggesting to her about mentioning something to her doctor but she just brushes it aside saying there’s nothing wrong with me it’s your father driving me up the wall. My father has also noticed and I can tell he’s scared as he’s honestly like a cave man and would be so lost without her, she does absolutely everything for him. I live a hour n a half away from them too but have been going down every week for the last month or so
I’m so scared I just don’t know what to do or where to go from here , I’m writing this feeling absolutely broken. Some days she seems fine n it feels such a relief n I sort of put it to the back of my mind and then this morning I had spoken to her and she’s totally muddled about something again and told me the same story that she told me yesterday. She’s also getting quite abrupt with me too and even my kids who she adores , is that another sign? I’m sorry to ramble on as I said I feel broken and lost and just don’t know where to go from here xx

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Hi Julie,

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

This sounds like a really difficult situation for you all. Remember we're here for you and you can always call our Dementia Connect support line on 0333 150 3456. On this number you can speak to a trained dementia adviser who can give information, advice and support.

Support line opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

Hope this helps, Julie.

Alzheimer's Society blog team

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Thankyou so much for your reply. I feel like i have already made a massive step even coming on here and talking about her and the situation. Im due to drive down again tomorrow with my boys to see her so shall see how she is then. Im sure this lockdown has not helped the situation at all , shes normally busy and she'll go into town on the bus a couple of times a week and the holidays we would normally go down and stay and all go off shopping together which she loves.
I keep hoping all this is going to go away and she will go back to normal but i know underneath its not. Again thankyou so much for letting me know there is support out there if i need it xx

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Hi Julie, I am so sorry to hear what you are going through. It is the most cruel of diseases, and sometimes can take a long time for the person to acknowledge what is happening to them. I can only tell you about my own experience, but I too found that my mum became quite irritable in the early days. I came to learn that this was borne of frustration, and fear. Deep down she knew something wasn’t right and would become so frustrated when she struggled with something, because she had always been so capable. That manifested as irritability. But it wasn’t really me she was cross with, it was what was happening to her. I always tried to hold that in mind and think how annoyed I get when I misplace something, and then magnify that by 5 times and then I could envisage how scary her internal world was becoming. If there is any advice I can give you it is not to pretend it’s not happening. Alzheimer’s is not something that will get better, but you can slow the progression with the right drug combinations. They wont cure your mum, but they may make the decline slower. But in order to access those drugs you need a diagnosis and referral to the memory clinic (or however they do it in your area). If you leave it, and she gets worse, there will come a time where there will be no point taking the drugs because she will have passed the point of them having any therapeutic effect. Also, please make sure you look after yourself. This journey is exhausting, and it will take an emotional toll on all members of the family. I found the Alzheimer’s Society to be a fantastic source of support, both for mum and me. Mum used to go to a weekly group run by AS which helped her a lot in coming to terms with it, and I also had a carer support person who would come and see me. Utilise all the support you can, and remember she is still in there. Sending you all strength xx

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This is an outstanding piece of writing. Thank you so much for sharing it.

I lost my Mum to Early Onset on 30th March 2020 - three months ago. She developed symptoms around 59/60. She was educated, clever, kind, giving, funny, passionate, beautiful and fought for social equality. through her research (she was a university professor). She was also SO fit and healthy (so I find the alledged risk factors frankly a load of nonsense and I think they're mainly still stabbing in the dark).

I especially love what you said about a sense of selfhood. People make assumptions about the disease - about how one 'loses the person' in advance - my Mum lost language, cognitive function, most movement but was never unkind and still chuckled all the time. She was known for two things in her care home - one was smiling - her nick name was smiler -( she was a positive person in health and I guess she was in illness too) and that, as one of carers put it "With Maggie - no means no!"....i.e. when she didn't want x to eat or y to drink or her meds or whatever - the no was final, you wouldn't coax her into it. These two things sum up who she ALWAYS was - happy, kindly and yet resolute and decisive.

Unfortunately, we did not get the end you had. I last saw Mum on the 12th March and she was doing ok...ill, obviously but I was making her chuckle and she was eating treats I'd taken for her....she put her hand on my hair and said the words "my girl" and as I was leaving, the word "love". Then lockdown happened. And somewhere in that time she just went into decline - I will forever worry she thought we weren't going because we didn't care or something. She apparently said she wanted to go to bed and just never regained consciousness. We had an end of life care plan in place but they only adminisitered one shot of morphine and she left. With a carer but without any of us. It felt and still feels shocking and stunning and I grow tired of people assuming that because she was ill, it wasn't a shock to us. It's hard to even find words to express how I feel about not being with her - either when she died or for 3 weeks before - the guilt and horror of that maks me physically ill. I had tried to be comforted by the carers saying she was peaceful and completely unresponsive but who knows now whether she'd have been comforted by me, the person by whom she was always somehow calmed. I just have to live with that I guess, on top of actually losing my Mum so early and unjustly.

That said, I was always dreading the not swallowing and a slow passing that way thing (I had, of course, read up on it!) and she was spared that at least - just Mum, at the start of a pandemic, asking to go to bed and deciding that was enough.

I wish they would put half as much time and energy into researching Alzheimer's as they do into cancer, truly.

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Hi Emma, I am so, so sorry to hear about your mum. Your mum’s situation sounds very similar to mine, in that she was fit and healthy and didn’t tick any boxes for risk factors. I think selfhood is absolutely still present, at every stage. People do not lose the essence of who they are, if they were resilient and kind and independent in life, that is what will come through in dementia - in my experience anyway. I feel like amongst the distress and the symptoms, often the person gets lost. There was a lady in my mum’s nursing home who never stopped tidying, her daughter told me that she had been incredibly house-proud in wellness. Another chap who would sit on the ground to eat his lunch, with his back against the wall, it turned out he had been a miner. The staff found him an old tin lunchbox to put his sandwiches in. Those things really brought home to me how much of the people were left. It was as if they had in some ways returned to distilled versions of who they had been. I am so sorry that you didn’t get a chance to say goodbye to your mum, this lockdown has been so cruel on so many levels. But also, don’t doibt that she felt that love from you. The fact she was spared the final indignities of not swallowing is a kindness in a way, it takes days, sometimes weeks and the person is often aware (i know my mum was). I continue to replay that final two weeks over a year later. The fact your mum made a choice to go to bed says something really powerful about who she was and her strength. Sending much strength to you in your grief, Emma.

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Yesterday was a day.
Just over 42 years after my mum spend hours sewing name tags into all my clothes before I went to boarding school, yesterday I was writing my dad’s name in labels on some of his clothes so we could take him to a nursing home. My parents have been together over 55 years.
My mum also has less - advanced dementia and when she saw the suitcase she began unpacking it saying I shouldn’t take his best clothes ‘ in case they got stolen’ it turned into a shouting match and I had to keep putting the items back in. I managed to get him out of the house and lock the door because mum can’t always remember where she has put her keys. i knew that taking her with us would be disturbing and upsetting for them both

The people at the home were really friendly, helpful and empathetic. He seemed to be happy almost right away.
When I got home mum had forgotten all about the altercation and the shouting and asked where dad was. ‘ I don’t way to live here on my own without him ‘ she said. Visits from friends and family are helping her. But the next day she asked again where he was and when he was coming back from day-care at the home. We will just take it day by day and at some point she will join him.

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I have just made the heart achingly tough decision to put my wife of 40 years marriage into a residential care home. She was diagnosed with early on-set alzheimers several years ago and her alzheimers has progressed with the inevitability we had been told to expect. Moving her to residential care has been the hardest decision I have ever made. Azheimer's long ago robbed my wife of her ability to show any emotion, she struggles with words and can't remember anything from one minute to the next, but visiting after she had been there a few days she looked me in the eye , touched my arm, smiled and said 'thank you, I am so happy here'. I think she knew it was time to move on and although seemingly so unaware of the world in general she also knew how hard it had been for me to make that decision on her behalf. Despite everything, despite all the fog and confusion of alzheimers , love and selfhood remain and it prevails above this awful and cruel disease.

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Heart breakingly honest. Gets to the nub of dementia. Thank you.

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Thank you so much for sharing your story. I have been on this journey with my Mom for many years. She is losing a bit more of herself daily. She hasn't know my name/who I am for years but like you said, I am a familiar face. I love when I see the "Mom" I knew peek through the fog of Alzheimers every once in awhile.

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Wow this is so real to me, my mum was diagnosed September 2018 and they say she has had it for 2 years prior so she was also 57, she's now 60 and she's changing so fast, faster then we thought she would, the list of things she can no longer do is growing daily. I have some many questions I'd love answers to.. where to start?! But reading others stories helps me feel like I'm not alone is this scary journey.

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Thank you Jacqueline. My wife was diagnosed with Alzheimer's in October 2018, although I suspected something was not right for some years before this. I am know in the first year of caring for her after the diagnosis, as you say caring demands many different skills in dealing with this. After 57years of marriage it's very difficult to come to terms with the person they have know become. The worse part for me is the violent and aggressive behaviour that seems to be part of Alzheimer,s from a person who as never been this way. Thanks for your heart warming story. And God bless the society for the help I am receiving with my plight.

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It’s so good to hear you tell about the sad times during the later stages of Alzheimer’s. So many things I have read make it sound like a little inconvenience for everyone.
My husband passed away a little over a year ago and went through so many of your mothers symptoms. He was a 20+ year retired from the USMC, so things changed drastically. That you for telling your story.

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Thank you, Jacqueline, for telling us your mother's story and the fact that the essence of this wonderful woman remained until the end.

It was the same with my mother and father who both died as a result of vascular dementia. The illness stripped them of so much but not of who they essentially were.

xxx

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Thank you so much for sharing your story. This resonates so much with what our family is going through now with my mum. It is so hard on everyone involved and something you can’t understand unless you go through it yourself. Take care xx

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Your mums journey is almost time for time and stage by stage the same as my mums... horrendous... except my mum was trapped in the hell for another 5 years . Now dad has it .... I’m ok but really struggle to find anything positive in a diagnosis of dementia. I applaud you in finding positives ❤️ Take care and good luck for your own future

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So very, very true. Xx thank you for sharing xx

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