Dementia Support Line
Real stories
'My Poem to Dementia' - Caring for Mum in hospital during coronavirus
Julie's mum, Eileen, was living well with dementia in her assisted living property before the pandemic. But when Eileen contracted coronavirus, she needed to be admitted to hospital. Julie shares her story, and 'My Poem to Dementia'.
My mum, Eileen Walker, is a legend and the strongest woman I’ve ever met.
Mum loved my dad so very much. My dad was a rascal when they first got married. He would skip work to go fishing, which was the second love of his life! They had five children - two daughters and three sons.
My parents didn’t have a lot of money but gave us everything we needed; an abundance of love, fun, laughter, morals, and how to be a nice human being.
Mum worked hard, at home looking after us, baking jam tarts, and making home-cooked meals.
When we were older, she worked in a factory at the end of our road and could see the garden wall from the window. At times she would have to come home when one of us burnt the frying pan and would leave it in the garden to cool down. She could see the smoke! Mum was protective but never overprotective.
My sister and I are both strong independent women – that was what both Mum and Dad wanted us to be, but Mum was the one that truly shaped us.
The boys were always taught to be respectful to women. Mum would say, 'Think about how you would like your sisters to be treated and treat girls the same as that'. All my brothers became wonderful boyfriends, husbands, and fathers too.
How lucky are we to have had our mum as our mum!
Mum loves nothing more than family get-togethers. She would dance along with the best of them, and always the last to go to bed!
Mum was a great dressmaker and her knitting was renowned. She knitted my brother-in-law, who’s a motorbike fanatic, an amazing Harley Davidson logo jumper, which he still has to this day.
She always looked gorgeous, was very particular about the way she looked, hair always right, make-up on, and clothes spotless. The green outfit Mum is wearing was something she made to go on holiday! I think she looks like a model.
Mum shared Dad’s love of fishing and together they would go fishing on a Friday evening and come home on a Sunday. We were all in our teens or married by that time, so it was fine. Mum was in the Angling Times for catching a 26lb 7oz carp and could fish along with some of the best of them.
Mum has a great sense of humour, which we are lucky enough to have inherited. Dad would love her one-liners and they used to make him chuckle.
Mum and Dad were married for 65 years until Dad sadly passed away in 2014.
Mum's dementia diagnosis
Mum was officially diagnosed with Alzheimer’s disease / mixed dementia probably two or three years ago, although she showed signs of this when Dad was alive. She did tests but was always one or two points from diagnosis and being referred for a CT scan.
Mum lives in assisted living accommodation and was doing well up until the coronavirus (COVID-19) pandemic. Visits are very restricted at present. Currently, only one family member is allowed to visit her, and at times no visits unless in emergency circumstances. This is very hard for Mum and the family.
Mum was recently in hospital with COVID-19 and other health issues. Not being able to see her or talk to her was a daily struggle, as it is for everyone at this time.
I would worry and visualise Mum in her hospital bed worrying about me and wondering why I am not able to visit her.
I got her a mobile so that she can ring me but in my heart, I know she won’t be able to use it. I have to talk her through turning the TV over these days. I just had to hope a nurse would find the time to help her. These are sad times.
Worries about changes in Mum
Mum's discharge from the hospital was delayed by a day due to transport issues. When I spoke to her about it, Mum asked me what my dad thought about the delay. This took me by surprise as Dad passed away over six years ago. She asked me twice and I just said, 'As long as you are well enough to go home, we are all happy with this'.
Since he passed away, Mum has never talked about Dad in the present tense. Another part of this sad journey!
I spoke to Mum's carers to make them aware of this. I was concerned she'd become upset, agitated and scared when being taken somewhere she no longer recognises and also that my dad is not there. It may have been a one-off comment, but I just don’t know.
I have been adding lines to this poem for a number of months now. At times, the changes to Mum occur so rapidly, they can catch me by surprise. Other changes are taking place slowly.
My Poem to Dementia
by Julie Donworth
What have you done with my mum dementia
I look but I cannot see
The woman and the mother she once used to be
What have you done with my mum dementia
She sometimes tells me to ‘sod off’
Instead of when I enter I would hear “hello my love”
What have you done with my mum dementia
Her eyes seem to have lost their light
And now she sits in her chair from morning to night
What have you done with my mum dementia
She doesn’t always remember her grandchildren’s names
She knew every single one of them, it’s such a terrible shame
What have you done with my mum dementia
She doesn’t always remember to drink or have a meal
I wish this ongoing nightmare wasn’t real
What have you done with my mum dementia
It is such a terrible crime
That you are taking away the mum that once was mine
What have you done with my mum dementia
She thinks she’s washed, hair done and looking smart
But the reality is she’s unkempt, sometimes smelly and it breaks my heart
What have you done with my mum dementia
She doesn’t look happy any more
She doesn’t smile and say a cheery hello when I walk through the door
What have you done to me dementia
When she repeats things over and over again
I no longer have patience and it just drives me insane
What have you done to me dementia
I seem to be distancing myself for when the day comes
That she doesn’t know me and that she’s my mum
What have you done to me dementia
I no longer enjoy my frequent visits to mums
And get upset with myself when time to leave comes
What have you done to me dementia
The person who cared for her without a blink of my eye
To the one I am now, guilt ridden, resentful it makes me cry
One thing I know dementia you will never take my memories
Of the mum who would race us all around the block
Dad standing by the gate in charge of the stop-watch
One thing I know dementia you can never take away
Memories of playing games when we were all young
On a Sunday afternoon laughing having fun
One thing I know dementia you will never take from me
Memories of mum looking gorgeous when dad got home at night
Lippy on, pencil skirt, heels, hair done she looked a bit of alright!
One thing I know dementia you can never steal from me
The woman she once was, a caring loving mother and friend
These memories will stay with me until the bitter end
So I say this to you dementia – one day your day will come
That you won’t be here to take away someone else’s mum
The time will come dementia that you will no longer be around
The hard work the researchers do – a cure, I’m sure will be found
So for now dementia I will find that person within, that I once used to be
Who cared for mum with no regrets, no guilt but just the loving me
And make her day a brighter one and make more happy memories too
That’s my pledge to my darling mum and dementia that’s my promise to you
Isabella Paton
saysWhat a wonderful lovely poem I cried my eyes out when I read it.
My husband of 57yrs has just been sectioned and I'm heartbroken I love him so much and to see him like he is is soul destroying .
My thoughts are with all you people out there who are facing this terrible terrible illness
Dee bishop
saysThis is so lovely and sounds jyst like how I feel atm..my mum is 5yrs in with vascular dementia.since last admission to hospital for a chest infection in December things have gone downhill.i gave up work 2yrs ago to care for her..but this last month it has got very difficult ..I’ve resulted in carers coming in as she’s not drinking and eating much and getting angry with me as I keep on at her to do so..I think she looks at me as the baddy and not a daughter anymore..I think I’ve got to a low point and admitted defeat which I feel a failure for.but I need to be her daughter again.Thankyou for sharing your story and poem.x
Julie Hart
saysI have been feeling so alone until I read your poem, My husband is 64 and was diagnosed with dementia 3 years ago but think things were not right for 8 years, This year as got worse with several attacks on my self. On my birthday 12th october he was sectioned and so far have only seen him twice.He was moved to a hospital a hours drive away and visits only at night for half a hour and between two wards. so not many spacers. My emotions are over the place but am lucky to have the support of my family. It is such a hard time for us.
Eliabeth
saysSuch a heart felt poem. My darling father has Lewy Body Dementia and is currently in hospital unwell. It has been so most heartbreaking thing I have had to endure in my life. Such a beautiful and loving father. It was only weeks ago that we were dancing and singing together and now his arms are tied together and he is in a secured hospital bed. I am lost for words. Worst of all he is on the other side of the world. I have just come back from 3 months with him. Spending every day with him, even the days that were difficult I treasured. I would do anything to have a moment with him again. COVID is making the possibility of seeing him again unlikely. I agonise the thought of losing him and also rejoice that I can celebrate having such a wonderful father. This disease is cruel. I hope a cure is found soon.
Liz
saysWhat a wonderful poem, very relateable and captures the struggle I also face of trying to have quality time with my mum whilst I still can but it's not easy to do so anymore because of this terrible disease. So many conflicting feelings and thoughts surround this and it's tough for sure.
Sarah
saysJulie that is beautiful. You’ve encapsulated your Mum perfectly, it’s made me very emotional xx
Julie
saysThank you xx
Kathleen
saysThis brought tears to my eyes. I can relate to this. Beautifully written by a caring, loving daughter
Julie
saysThank you x
Louise Poynton
saysSo very beautiful. I have known friends who have expressed the feelings that are written in this beautiful poem. Thank you so much for sharing this xx
Julie
saysThank you for your kind words.
Beverley
saysThank you for sharing your poem and to be honest I echo everything you say. I lost my dad just over a week ago with advanced dementia suffered over a number of years. However, as I am sure many will agree, we lost him twice. Once to the illness and then when he passed. I would not wish this for anyone and reading your poem expressed all the feelings I have had for years thank you
Julie
saysSorry to hear of your loss. Thank you for reading my story and poem. Take care and be kind to yourself.
Mary Rosato
saysI am the sister of Sheila Beatty and when she sent my your poem Julie I shed many tears. You are right though, dementia will never take our memories of our wonderful parents. Thank you Julie
Julie
saysThank you for reading my poem
and your kind words. Memories are ours and no one can take them xx
John Donnelly
saysI shed a tear or two reading your poem, every word you have written describes what I'm going through with my wife who was diagnosed in 2010 but struggled for a few years before that, she used to knit, croquet, cross stich, make the kids clothes as well as keep the home clean and family fed, the last major task before the Alzheimers took hold, was the family history, family and friends are a godsend as when they see her they make a fuss even though she doesn't recognise them, the worst is she's been abandoned by our daughter who hasn't been to see or contact her since March of last year(2019) and even then she didn't say hello to her mom just a card shoved through the letter box. And before people ask, I don't know why. Hopefully they will find a cure but sadly it will be to late for my wife, but hopefully other families won't go though what I and my wife are going through.
Julie
saysI am so sorry to hear this. It sounds like you have a great network of friends. Xx
Sheila Beatty
saysJulie, your poem made me shed a tear too - my Dad has Alzheimers and Vascular dementia, my Mum had Alzheimers and sadly passed away in August 2019, but she was 95 and could go on no longer. It is such a cruel disease and differs in all sufferers. Mum was lucky enough to not have to go into Care, Dad too as things are - he kisses Mum's Order of Service for her funeral every night and prays for her, though often wonders "Why she's not about" bless him. More than anything Julie, I loved hearing from your life, the life in your Mum and yes she does look like a model in that picture and full of fun in the other. My Mum too was a strong lady and worked across the road in a hosiery factory and popped back too to find us jumping down the stairs onto a mattress. I went to the football with Dad and he still loves his Irish music in the morning at breakfast time. More than anything your story and Poem especially is loaded with love and that's what will keep you going. Thank you for sharing all and I'm sending it on to my Sister, Brothers and friend in Hartlepool who's Mum went into a home in February. Good luck for the future and keep adding to your poem - so very honest and true.
Julie
saysThank you for sharing some of your memories - made me chuckle the story of you jumping on the mattress. Being one of five children mum had her hands full! She loved it though. X
Janice Llewellyn
saysYour poem started me crying because it reflects my life with my husband who was diagnosed 5years ago aged 63. We just get glimpses of the happy go lucky man that he was, but I still have him at home with me thanks to the wonderful male carers. Let's all hope that they get a cure for these terrible illnesses soon for future generations.
Julie
saysSo young to have this diagnosis. We tend to think it’s ‘old’ people that have it. Glad you have great support and thank you for reading my story and poem.
Clare Akhurst
saysWhat a lovely poem. I lost my dad to dementia two years ago in July.
This echo’s every emotion that I felt, the guilt that I flelt for having sometimes been impatient before we had his diagnosis, further guilt at not being able to cope with caring for him when his lewy bodies progressed. At which point I was sleeping by his bed because he kept trying to get up and would fall out of bed.
He was eventually admitted to hospital and from there we were told he couldn’t return home.
I visited virtually every day for 3 or four hours to the point where I knew all the nurses and careers very well.
When his health deteriorated and he developed pneumonia I never left his side until he passed away.
The words of that poem sum up the thoughts that were running through my head constantly.
My poor darling dad. It is such a cruel illness.
More financial support and resources are definitely needed to improve the care and help these dedicated workers who are always struggling with staffing issues, time and lack of equipment etc.
Julie
saysWhat a wonderful daughter you were to your father. Caring for him so well. We beat ourselves up as we never think it’s enough. Thank you for taking the time to read my story and poem.
Brian Witcombe
saysAs others have said - and much more eloquently - both your story and poem encapsulate the experience. Thank you so much for expressing the feelings and frustrations that we all feel, but often regard as "The Truth that Dare Not Speak Its Name".
Julie
saysThank you for your kind comments.