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
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72 comments

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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: https://www.alzheimers.org.uk/dementia-connect-support-line

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: https://www.alzheimers.org.uk/dementia-connect-support-line

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: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

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!

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: https://www.alzheimers.org.uk/dementia-connect-support-line

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: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

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: https://www.alzheimers.org.uk/dementia-connect-support-line

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: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

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:
https://www.alzheimers.org.uk/blog/how-offer-help-someone-dementia-who-…

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.

I am living this right now with my sister she is 55. WithCovid I have her with me at home with Hospices. She is late stages bed bound no words with a few cuss words lol and sometimes I love you. This is a evil monster.

My mother had dementia for c. 15 years. The last few years, say six or so, were awful; for everyone. NHS CHC was a non starter, despite us fighting relentlessly for it. In the last year mum was mostly immobile in a hospital bed at home in her dining-room. She was a doubly incontinent, living skeleton for those twelve months. There is no other description than dreadful, with private carers visiting for a total of 120 minutes in each 24 hours. Dad couldn't afford any more if he was going to sustain some private care into an indeterminate future. Emotionally I said goodbye to my mother a long time before she actually passed away. Prior to the current crisis of Covid the PM made claims of working on "Social Care" but who believes this would happen, even if Covid had not happened? Dementia is too messy for such policy makers and even the NHS refuses to call it an "illness". Everyone who has experienced this frightening thing needs to campaign for proper recognition of its hideousness and for practical and financial help. My mother would have been horrified by her later years as her mother had also had dementia, and my mother always used to say she did not want to go through an ordeal like that. And now my mother is gone, I can see not one vaguely positive facet in dementia. The family and those close to the sufferer share its ruthlessness, it leaves everyone exhausted and shattered. All we can ask is that all those affected stick together and support one another in getting dementia recognised properly and formally by the NHS and policy makers as an illness demanding the same financial consideration as any other disease or injury We should not let figures in authority deny dementia for what it is, that is a chronic illness that goes in just one direction.

None of my Mother's Family talk to me since my Mother was diagnosed with Dementia/Alzheimers. This includes her Brothers,Sisters,Nephews or Nieces. I not only am losing a Mother who I truly love but I have lost a Family. In times gone by I overlooked circumstances and Situations with my Mother because I simply thought that I was overthinking the situation. During the Summer time my Mother believed that there were 2 mornings in a day because of the additional brightness. My Mother went into Residential Care in January and has had a swift decline in condition since. I feel hurt everytime I visit because my Mother simply can't remember who I am. My Father had Motor Neurone Disease when he died my Mother now has Alzheimers and I myself have Epilepsy I have a belief that all conditions/diseases are connected. The first time I noticed any major change in my Mother was December 19 and it has been a rapid decline in condition. I know this might sound cruel but I pray to God that my Mother goes to Heaven soon because I don't want my Mother's pain and Suffering to continue for a long Period of time.

My father had mnd and my mother also has Alzheimer’s. I don’t know which is worse. Terrible diseases

I completely understand everything you said about looking after a parent with dementia,the roles reverse and you definitely suffer bereavement even before they pass away. I cared for my mum for several years alongside my full time job until she became unsafe to be alone at home so as a family it was decided she should go into a care home that was June 2019 ,unfortunately 2020 covid 19 come and I’m now sitting and mourning the loss of my most important,special,wonderful mum and best friend,it was 12mths today this cruel virus took her away 😢😢😘😘

You are 100 percent accurate. I care for my mother who suffers from vascular dementia.
Dementia is a disease like any other, but for financial and political reasons is discriminated against. The general public from my experience have no idea of the physical, mental and financial cost to families and individuals. Boris Johnson has made a financial pledge, but the devil is in the detail, and experience of life tells me this will be totally inadequate!

Your story is so like mine, my 2 brother's and sister are all the same as your mum. They too were in their early 50s. Sadly my dear brother John passed away a few weeks ago. My other sister and youngest brother are also showing symptoms now which would mean that 5 of my family are in it. Due to the death of John they had found the amyloid in the brain and it is linked to the APP gene also. John's doctor told me that we are looking at early onset alzheimers, makes since now why all mums family all died very young including my dear mum and her own mother. Its all in the genes if only I could get my other 2 family members to see that there is help out there but they can't see that they are not well, and think that I am making all this up. I have it in black and white what the autopsy found and still they won't seek help. What a shame as John died with it and he didn't know he had it. Bloods had went off to Germany for genetic tests and if it wasn't for John we would have never known. John death has given us as a family the answers that we needed , there are 2 family members in nursing homes in there early 50s and they are in the last stages of this disease.

Just wanted to mention that palliative/hospice care is something worth looking I to sooner than later. You don't have to wait specifically until your loved one is bed ridden. Medicare covers it and you can call a local hospice and they can typically handle most of the process if you are unsure. Also PCP sometimes don't realize this either or get push back when they recommend it so may be apprehensive but it does mean it wouldn't be available and beat care choice. Use all the resources available that you need. And have anything else ready on the line so to speak. I guess we all learning that staying a step ahead is a huge challenge.

Thank you for this. My Mum has dementia and it is aggressive, in a matter of months I have seen her go from Mum to not recognising me sometimes and talking to me about her girls. My Dad is having to feed her, shower etc.
I am finding it very hard and your story has really helped.
I have just had baby girl (our first, their first grandchild) and it feels as though I am loosing my Mum whilst I have just become a Mum.

Oh gosh, just wanted to send a hello and support. I remember new parent days and how overwhelmed we can become adding your mom's caretaking to it is definitely a challenge. Just do the best you can but remember that doesn't mean torturing yourself. It's hard to get hands on support so take what you can get whenever you get it don't hesitate or let guilt guide you.

Im in Scotland and my mum has been diagnosed with Mixed Dementia. I could not cope without Glasgow City Council "home care" team. they see her 3 times a day for personal care for free. Its so sad your Dad is doing so much. I would really struggle without that support.
Congrats on your baby girl and sending hugs.

My mum also has mixed dementia. She is 83 and was diagnosed around 4 years ago. She sleeps her day away, it’s so sad to see. My stepdad passed away in January this year and we did initially tell her and she forgot however was too upsetting to repeat this to her as she has forgotten and thinks he’s in a care home, which we go along with, makes me feel so sad when I need to leave her on her own. I am in Edinburgh and she has carers 4 times a day but they aren’t much help. I visit everyday after work. I find it so difficult at the moment, some days she is a lot more “switched on” than others when she doesn’t speak and seems constantly tired. She fought of hospital contracted Covid over Christmas and also was hospitalised for 3 weeks with heart problems. Since she was discharged she has declined so much.

My mam is also 83 and diagnosed with mixed dementia. She was diagnosed at the start of the first lockdown so my dad has had no help and looks exhausted. She is incontinent and and also sleeps most of the day away.
Today, for the first time, I think she forgot who I was for a second. We were chatting away and my dad left the room and then she asked me how my mam and dad were. When I told her she was my mam, she looked really embarrassed and then asked how my husbands mam and dad were, but my mother in law passed away in January and she didn't remember.
It's heartbreaking.

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