Dementia Support Line
‘With Alzheimer’s, you are constantly in a state of grieving’: Loretta’s dementia story
When Loretta's mum, Dinah, was diagnosed with young-onset dementia, Loretta began to grieve for the person she was before her diagnosis. Dinah sadly passed away in 2020, which has led Loretta to reflect on her personal experience as a carer.
When my mum was diagnosed with Alzheimer’s disease in September 2012, it felt as if we had all been handed a life sentence. All I could feel was the injustice.
Early onset Alzheimer’s, they said. I only had knowledge of Alzheimer’s happening to very old people and my mum was just 62. I was only 25 at the time and couldn’t grasp everything that was happening.
Part of me felt that my mum would overcome this, with determination and somehow sheer luck, we could beat this disease.
But the truth was this is something that would be part of our lives forever.
Adapting to Alzheimer’s
What I always took for granted with my mum's Alzheimer’s is how things would progress. We would all have to adapt to the way in which we cared for her and what she needed frequently.
At times, I would feel that I had ‘mastered’ the care I was giving my mum, found a routine. We'd feel okay with how things were, but before we knew it, she had deteriorated again.
Looking back, you realise with a disease such as Alzheimer’s, you are constantly in a state of grieving. You are constantly losing the grasp of what your relationship was with that person, and there is absolutely nothing you can do about it.
The person you love is in front of you, yet you’re screaming inside for just two minutes, or a moment, of how things were before.
There were so many things I wanted to fill my mum in on – events that had happened in my life, jobs, or relationships. At other times I needed advice, yet she couldn’t give it. I wondered at times if, deep down, she was screaming to be heard and understood too, as she lost her ability to speak and ways of communicating with us.
Precious moments of joy
Caring for my mother during her illness wasn’t always filled with sadness. There was also so much joy! My mum still had her wicked sense of humour and laughed at the silly things I did around her.
When she mustered the ability to speak, she’d whisper ‘I love you’ and hold my hand tight.
Her face would brighten up when I’d walk into the room. She was my mother, but she became the person I wanted to fiercely protect. I wanted to take away anything that was causing her pain and discomfort, because she did not deserve to go through that.
I grew up so quickly in those years. I learned patience and I learned not to be hard on myself.
'Most importantly, I learned that it’s okay to not always be in control. Because you are not, sadly this disease is'.
I took for granted how much time we would actually have my mum around with us. I took for granted that this disease would eventually take its last turn, and take my mum away.
Grieving for Mum
When Mum did finally pass, not only did I feel robbed but also I felt displaced. What was I going to do with myself if it no longer meant taking care of her?
Together with my siblings, we spent nearly eight years working together to make my mum's life as comfortable as possible. I was maybe naïve to think this would extend her life, only for it to be snatched away. Then eventually I felt relief and immense guilt that I did feel that way. However, I know it comes from knowing my mum will no longer be suffering from this cruel disease.
The memories of my mum are of times that were excruciatingly painful and moments of anguish, where I witnessed parts of her illness that made me feel completely helpless.
Despite this, I have memories of my mum pre-Alzheimer’s, when she was full of life, vigour and was teaching me life lessons. These are gems for me now in later life.
One thing I’m glad about during the time of Mum’s illness is that I allowed myself to be present in that time.
To enjoy my time with her rather than focus on what the inevitable outcome would be.
The support I had from other people with Mum’s care was just as important as the support I gave to her. I’m glad that at times I asked for help.
Would you like to share your story?
Writing and sharing a story about how you or a loved one has been affected by dementia can offer some relief for both writer and reader. Find out more about how to share your story.
Tina
saysHi Loretta,
Thanks for sharing your story.
So much of what you wrote resonated with me and my mums cruel relationship with alzheimers: Our mum was diagnosed with alzheimers back in 2006 and passed away last month. We saw the stranglehold this debilitating disease took on our mum and her fight to keep control only to lose so valiantly. She held on for over 14 years which on one hand was painful to witness, but on another not so, as there were moments when our mums true self appeared through the fog.
I am sad for your loss Loretta and send heartfelt wishes to you and your family. Hang on to the happy memories, Take Care
Graham Blakey
saysLoretta,
I care for my wife who was diagnosed with AD aged 55 in 2019, when we received the diagnoses of complexed early onset AD it was soul destroying.
My wife also has epilepsy & organic brain disease, I care for my wife by myself, I feel for you lorretta but you need to look back at all those loving memories and cherish them and that way your mother will always be with you.
Sharon
saysLoretta
I care for my husband who was diagnosed With AD 3 years ago at the age of 51!
I struggle each day and feel guilty all the time that sometimes I get so frustrated with him and I know it’s not his fault, to watch someone change in front of your eyes is so hard!
I want to care for him for as long as I Possibly can but know it’s going to be the hardest thing I have ever done, I just take each day as it comes, that’s my only way of dealing with it,
Thankyou for your story, it helps me reading your story and everyone’s comments that I am not on my own,
You should be so proud of yourself xx
Clare Burgess
saysI hope you and your family will begin to fill with pride rather than sorrow as time goes by. You have so much to be proud of. Clare x
Kate
saysThank you for sharing you story, you have worded this so perfectly , this is exactly what I going through with my mum, I struggle so much with this loss
Vincent Lyte
saysThank you Loretta for kindly sharing your story. I can relate to it in everyway. I am still caring for my Mum everyday. What you said about the ups and downs of the disease progression is so true. And there are even days when I get a gilmpse of my ‘old Mum’ and then days when she seems totally lost again. I keep a picture in my bedroom of her with her grand children looking happy, proud and protective and it helps to remind me of who she is inside still.
Just comfort yourself knowing that you did the best for her and I am sure deep inside she understood and appreciated your love for her and everything you did.
Caroline
saysThank you Loretta for sharing a little of your story.
I'm 57 and finding it hard to look after my Mum, who is in her 80s, so you did an amazing job to be caring for your mum at such a young age.
I recognise your experience of 'loss every day', and the inevitability of loss due to Alzheimers.
Alzheimers is a terminal illness more deadly than cancer, and yet I feel shocked and disappointed at the lack of practical support for mum and carers.
I hope you can feel proud of the way that you cared for your mum, and finally in 'letting go' so that she would no longer be suffering.
Sending warm wishes to you and your family xx
Lovelyn Umeloh
saysNice story and what a joy to know that you are there for her when she needed you.
Sam Wilson
saysThis is so sad! I feel that I relate to your reality so much. My mum was diagnosed in 2012/2013, and sadly only lived until 2016. Devastating our family. We to believed this was a disease for the older generation and was not prepared in the slightest! She deteriorated so quickly. She was our rock, the head of our family. To this day I cannot understand it, can’t come to terms with it. She never even met one of my children. My mum couldn’t wait for me to have children. This breaks me heart. Thank you for sharing your story. I sometimes feel so alone with this grief because I haven’t heard of many people that were young and trying to deal with this. I see in your pictures the same love I have for my mum. The same sadness, the same joy, the same tragedy. You did your mum proud!
Mrs Vicki Blann
saysMy husband is newly diagnosed wit AD. Reading this was very helpful. I am losing very slowly, the man I married 57 years ago. I do feel guilty that I’m not always as patient as I could be. Trying to remain calm and in control is not easy and I have lost my temper a few times and felt guilty. I have so much to learn.
Chrystle
saysPlease try not to feel guilty, I believe for many of us carers there are bad and good times, and the bad times are almost unbearable, as is the burden we carry. Please believe you are not alone, you are doing your best and forgive yourself
Graham Blakey
saysVicki,
I care for my Wife of 35yrs, she was diagnosed aged 55 in 2019 with complexed early onset AD, she also has epilepsy & organic brain disease.
I care for her myself with little help and look after the house, it is hard and painful work caring for someone with dementia but can be gratifying.
Please don't feel quilty most carers feel guilt when things don't go right, it's a learning curve but do you receive any support for yourself such as a carers support group if not get Intouch and maybe a course on dementia might help.
When we received the diagnoses it ripped a big hole in my heart and soul destroyed me for months and my health has deteriated, I feel for you.
Sue Hall
saysThank you for your post , I have been married for 48 years and my husband has had Alzheimer's since1997 I feel guilty when I cant stay in control and loose my temper .I thought I was on my own but now I know I am not. Thank you Vicki Blann,
Janet Pattinson
saysDon’t feel guilty about losing your temper I care for my husband and he can at times get aggressive remember we are not saints just ordinary people trying to cope with an difficult situation.
james bell
saysYou are human Vicki the turmoil and life changing event, the uncertainty of the different stages, is a lot for us ...............the emotions we experience are vast...........nothing can prepare us for what happens. i've been looking after a family relative who was diagnosed in march 2014, but, really had it since 2012. We just didnt understand or see it in the early days.
Its only the last year i have come to be more patient and learn to walk away and take a deep breath.....you want so much for them to be as they were, and you witness a person you love slowly being taken away from you. My heartfelt sympathy goes out to you and your family and hope you can find some warmth and comfort from photos etc, and your memories will always be there forever. God bless and take care.
James
Katy
saysLorretta, how I feel for you. I lost my husband, diagnosed 2013, in early summer this year. But he was older and what is heartbreaking is that your mum was relatively young. That wicked sense of humour of hers will see you through as well, along with the happy memories and knowing that you were there for her. Yes, I keep feeling I'm playing truant when I give myself so much more time; I wonder in the back of my mind is there not still this strict schedule in place. It's hard to believe he and that schedule no longer fill every day. But like you I am starting to look at it that he has given me this time and those happy memories, like a parting gift.
frances mccready
saysThank you for sharing your story, I feel your pain deeply as only another loving carer can . I hope you can hold on to the happy memories and have the strength to move forward with your life knowing your mum loved you and will always be in your heart.
Gill
saysYou did your very best for your lovely mum and she loved you the same as always
Brave Ladies, both of you ♥️
Sonia
saysLoretta thank you for sharing your story.I know that it was not easy for you to tell others about your grief .Remember you are not alone .
Anna Frearson
saysThat was so comforting to read. I totally understand the ongoing feelings of grief. My mum was diagnosed in 2012 with vascular dementia. Thank for being so brave to share your story. I can imagine the feelings of relief and guilt afterwards. My mum also has a wicked sense of humour and relies on it more and more to get by. I send you a hug in this different grieving space. Anna
Glen Barker
saysNever really understood dementia wish I did I could have helped my mum so much more i read the poem “maybe “after she passed away wish I had read it earlier please download xxx
Tania
saysMy heart goes out to Loretta. Very brave to share your story, which will help others. I am caring for my dad who has Alzheimer's, and I feel all of the same emotions. Sending a big hug to Loretta if she reads this xx