Dementia Support Line
Real stories
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.
Penny
saysI 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.
FM
saysMy 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.
Michael Grady
saysNone 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.
Richelle
saysMy father had mnd and my mother also has Alzheimer’s. I don’t know which is worse. Terrible diseases
Karen
saysI 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 😢😢😘😘
Wayne Wing
saysYou 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!
Elizabeth O Mahony
saysYour 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.
ILEANA
saysJust 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.
Michelle
saysThank 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.
ILEANA
saysOh 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.
eileen
saysIm 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.
Jacqui
saysMy 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.
Angharad Welsby
saysMy 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.
Rebecca
saysWow I have just read your story, it reminded me of my journey with my mum. I am in tears after reading this. Dementia is so awful, I wish someone would find a cure. My thoughts are with you.
Karis
saysThank you for this powerful story. My mum got diagnosed with Early Onset aged 54 in 2017. She is now living full time in care and no longer remembers me or my sisters. It's devastating and so cruel.
I am only 20 years old, but I am so so worried I will also develop Early Onset Dementia since it is a genetic disease. It is on my mind constantly and I don't know where to seek help. I really want to be tested for the mutated genes so I have an answer, but I have no idea how to go about it. I feel so lost. Thank you for sharing, it made me feel not so alone in this experience.
Laury
saysHi Karis, thank you for your comment and I am so sorry to hear about your mum. Re early-onset, as I understand it, there are many different types of Alzheimers and the genetic type - which is called familial Alzheimer's- is extremely rare. I think there are only a few hundred cases worldwide. This always occurs as early-onset, and yea if you have a parent with it you have a 50/50 chance of developing it. HOWEVER, what I have always been told is that whilst familial alzheimers is always early-onset, not all early-onset is familial - if that makes sense. So yes, there is an elevated risk, but by elevated we are ralking about maybe 2 or 3% not 20 or 30%. The alzheimers society can give you more information about this, and also I’d advise talking to your mum’s consultant too. That’s what i did. Re the genetic testing, i would think really really carefully about that, it is not like the testing for BRCA gene with breast cancer, where you can take preventative measures and have a mastectomy if you are found to carry the gene. What alzheimer’s testing gives you is the knowledge, but no way to act on that knowledge to prevent it. You are only 20, that is so young to have that type of knowledge hanging over you, if you are found to carry the gene. I briefly considered it, and decided it was something I absolutely didn’t want to do. Because all i would gain from it is knowing I’d get it, but not when. I didn’t want to spend the rest of my life waiting for it to start. Every time i misplaced my car keys I’d be a wreck. For me, it is enough to know there is an elevated risk, which is scary enough. If I have the gene, I’d really rather not know. Please think carefully before going ahead with that, and maybe consider some counselling too, to help process your feelings about your mum xx
Jill Tucker
saysI am so sorry, it is so hard to watch but even harder with the Early Onset. My mom is 82 and is in the later stages. I am 50 and have cared for her for the last 3 and a half years since my dad had passed. Recently she broke her pelvis and it has been a very fast decline. I also worry that this disease will be my fate. I found a book which I purchased at Costco called The End of Alzheimer's Program. The First Protocol to Enhance Cognition and Reverse Decline At Any Age. By Dale E. Bredesen, MD. There are many technical aspects to the book, but I have also found it interesting that in the studies that with diet, fasting, and exercise there is hope. There are doctors that can help and people who are controlling this. I like to think there is hope for us if we educate ourselves and are willing to try to beat this and maybe by the time you are older they will have found a cure. I hope for everyone that we can beat this horrible disease.
Anonymous
saysHello Jill, thanks for your comment.
The Bredesen Protocol (which is a focus of the book you’ve mentioned) is a type of alternative therapy that intensively uses diet, physical activity, nutritional supplements and herbal medicine to 'reverse' dementia. It is mostly sold through the services of alternative health practitioners, particularly naturopaths and nutritional therapists.
Given what we already know about risk factors for dementia, it makes sense that managing health issues (such as vitamin deficiencies, type 2 diabetes and high blood pressure) would have a positive effect on someone’s memory and thinking abilities. Despite some claims, there is no firm evidence that this type of intensive lifestyle regime can ‘reverse’ Alzheimer’s disease, so the way this approach is being marketed is concerning.
A holistic and person-centred approach to treating dementia is welcome, but Professor Bredesen’s intervention would need to be properly tested in clinical trials so that people can make informed decisions about its benefits. The evidence is currently lacking.
Here’s more information on what we do know helps to reduce the risk of dementia: https://www.alzheimers.org.uk/about-dementia/risk-factors-and-preventio…
In the meantime, if you have worries or questions about dementia, we recommend speaking with one of our expert dementia advisers through our support line: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this is useful, Jill.
-
Alzheimer’s Society Research Team
Mariah
saysHello, my name is Mariah. My mom passed away at age 55 when I was 21. You can get tested at a clinic. Meet with your primary and discuss options. It's worth it. Travel to your local Altz org, they should help too. Sometimes the best strength, is reaching inside and spending time to understand. The biggest strength it you, even when you feel small. Never give up.
ILEANA
saysOh man .just reading through these while I think about my mom. This breaks my heart though that your worried about if it happens to you. I know it is smart to kinda think of these things so to speak but you know try not to dwell on it. Your too young to let fear start eating away at your health. You know sometimes we can put our selves through the worst. You have Do your best for her but do your best to remember your a young woman with a full life ahead of you. Keep your optimism your mom wouldn't want you to be afraid. And neither do we. ☺️
Lg
saysPlease ask your GP to refer you to a genetic councillor- push for it. They will likely want your mum to have a blood test to determine if she carries a specific mutation prior to testing you (or your siblings, if they want to be tested). They will also discuss with you the potential consequences of deciding to get tested or not, so you’re fully informed.
If you decide to proceed you will need to ask whoever holds power of attorney for your mum about arranging the blood test or her.
I wish you all the best x
Anna
saysThanks for sharing. This blog too has also helped me to not feel alone. My dad was also diagnosed with early onset Alzheimer’s last year at 55 Years old. It’s hard to separate difficult behavior with himself and just the disease. I also understand and feel your worries about our future as well. It is really scary.
Stylishwoman
saysWe lost our beloved father to the incurable terrible cancer of the pancreas 3 years ago. Through caring for Dad our mum lost a huge amount of weight & after he lost his battle, mum had a total emotional breakdown. Slowly we started to notice a real change in her personality, she seemed unable to do the simplest of tasks & so after realising it was more than the grief we took her to see her GP. After being referred to the memory clinic at the hospital, being given a CT scan, having many in-depth tests done mum was finally diagnosed with Altzheimers & vascular dementia. This was last December19 & because of Covid 19 we sadly haven’t had much support but I am very much hoping next year once (fingers crossed) this terrible situation eases we will get the much needed help & advice for these two conditions.
Mum has really deteriorated since the diagnosis & is struggling with getting the knife, fork or spoon to her mouth when she eats. She is so tired all the time, very unsteady on her feet & she is sleeping about 18+ ish hours a day. She is slowly becoming extremely impatient & snappy which is totally out of character. Mum used to love watching TV but she doesn’t ever want to now & she has completely lost her sense of humour
At the moment I, (daughter) is her main carer, my husband & brother do help when they are not working.
I know how much she has deteriorated in the last 10 months & know she had it for quite a few years before getting properly diagnosed
We all as a family cherish every minute we spend with her as no one knows how long this disease will take to ravage her body & brain but We all thank her everyday for being such a wonderful, loving & caring mum & grandmother to us all
We all love you Valerie & always will
TO ALL THE SUFFERERS & CARERS
NEVER EVER GIVE UP THE FIGHT FOR THESE TERRIBLE CONDITIONS & STAY STRONG
Carmel
saysI just wanted to say that please know that you are not alone. I know this is a brutal and desperately lonely time but so, so many people and families are afflicted by the horror of this disease. It is devastating and heartbreaking and cruel. My mother has Alzheimer's around 10 years now. She is still with us,but I miss 'her' every day.
You are a remarkable daughter and you should be proud of the care you are giving to your mother. Take care.
Jane Huntley
saysThank you I’m going though time now today I feel like a broken women crying angry week your story helped me thanks
Joanne Skinner
saysThank 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
Julie
saysOh 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
Anonymous
saysHi 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
Julie
saysThankyou 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
Laury
saysHi 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
Jo
saysWhat an emotional story. I’ve sobbed so many times over the last few weeks since my mum’s diagnosis. She’s all I have, apart from my children, and I’m all she has. I don’t want to lose her, just want my mum back. She’s deteriorating rapidly and it’s heartbreaking. I find myself trying to stay strong for her but inside I’m crumbling. It’s certainly taking it’s toll on my emotional well being. It’s such a tough journey to be on.
Anonymous
saysHi there Jo,
Thanks for getting in touch. We're very sorry to hear about your mum's recent diagnosis. This must be such an emotional time.
Please know that we are here for you. You can talk with one of our dementia advisers about the current situation with your mother. They'll provide you with information and support. Please do call our Dementia Connect support line on 0333 150 3456, but take note of Christmas opening hours: https://www.alzheimers.org.uk/dementia-connect-support-line
We also have an online community where people affected by dementia, such as family members of a person living with dementia, can share their experiences and provide their own support, too. It's free, and open day or night: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We hope this is useful for now.
Alzheimer's Society blog team
Angela
saysWhatever you do dont leave it too long. My mum passed away on friday and my dad struggled terribly. He couldnt accept she was ill. Get a diagnosis and get as many professionals on board as possible. I just wonder if mum had been diagnosed sooner maybe more could have been done. Sending positive thoughts at a worrying time for you all
Amy Smith
saysHi Julie, your post is so much like my situation that I could’ve written it myself. My mum is also 67 and I’ve noticed a huge decline in the past year. She brushes it off and actually gets quite defensive when I bring it up and insists there is nothing wrong with her.
She also seems to be causing a lot of arguments about things from the past, she’s falling out with a lot of people and behaving erratically too. Her short term memory is really really bad and her anxiety is very bad too. I just don’t know what to do.
Emma Cox
saysThis 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.
Laury
saysHi 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.
Ruth
saysEmma julie i am so dreadfully sorry for what you both have gone through .emma i cant think of anything worse not to be with your mum i am so so sorry but she would have known what a loving caring daughter you were x
Ruth
saysI meant in my last post to write emma and laury
Louis
saysYesterday 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.
Andrew
saysI 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.
Emma
saysMy love to you
Ian Corbert-Walker
saysHeart breakingly honest. Gets to the nub of dementia. Thank you.