'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'.

An old photo of Julie's mum, Eileen, in the garden with her children

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.

Julie's mum, Eileen, in the garden with two of her children

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.

Julie's mum, Eileen, in two outfits

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

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57 comments

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Julie that is beautiful. You’ve encapsulated your Mum perfectly, it’s made me very emotional xx

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This brought tears to my eyes. I can relate to this. Beautifully written by a caring, loving daughter

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So 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

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Thank you for your kind words.

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Thank 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

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Sorry to hear of your loss. Thank you for reading my story and poem. Take care and be kind to yourself.

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I 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

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Thank you for reading my poem
and your kind words. Memories are ours and no one can take them xx

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I 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.

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I am so sorry to hear this. It sounds like you have a great network of friends. Xx

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Julie, 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.

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Thank 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

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Your 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.

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So 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.

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What 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.

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What 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.

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As 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".

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Thank you for your kind comments.

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Your poem is so true julie, it really hits home how much we all have lost. Both my parents have Alzheimer's, my mam late stage and dad diagnosed mixed dementia last feb. It's so sad and hard. It takes everything from all the family. I've cried my eyes out reading your poem as it's so true and very similar to my life with my mam. Thankyou and Takecare.x

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I hope you have support with caring for your parents, it must be so difficult for you. Thank you for reading my story and
poem.

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This is so beautiful true and moving , my mum as mixed dementia we lost my dad in November, she asks me every day is it true he died why wasn’t she there and she was .so I’m her main carer now but sometimes I break my heart seeing mum like this but it’s what you do I love her so much , but I am dreading the day she doesn’t recognise me then I think I would rather her go peaceful before that but then I feel bad again . So thank you the poem was beautiful xx

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So sorry for your loss., such a difficult time for you. Thank you for taking the time to read my story and poem. I was allowed to see mum yesterday, medical emergency and when I walked in she didn’t even look up. When she did she just said hello and looked back down. It’s heartbreaking. We must gain strength from our memories and hold on to them tight. Xx

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What a beautiful poem, and like the other comments mirror my experience.
My Mum doesn't always know me- yes I could be another one of those "interfering carers".
I feel so upset when I leave her - but cannot do anything .

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Thank you for reading my story and poem. It’s so hard caring for your loved one but made even more difficult in this pandemic. Take care x

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A wonderful poem that could have been written just for me! I am in the very same position with my mum who is 94 today. Shes happy in her little world as we have wonderful carers 4 x day, but now she just sees me as one of them. Such a dreadful disease - roll on a cure.

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Thank you for reading my story and poem.

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What a beautiful but sad poem I can definitely relate to . Such a horrendous disease dementia and Alzheimer’s pray we do get a cure before too long I cried when I read your wonderful poem it’s just so true to life caring for a loved one with this disease thank you for sharing. Xxx

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At times we think that we are the only one thinking the things I’ve written in the poem. It helps that there are so many people that can relate to the words in the poem - we are not on our own.

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