Jane and her mum smiling

'I’m losing my mum to Covid' - A dementia poem about care home restrictions

Jane has written a heart-breaking poem about how coronavirus has affected her and her mother, who has dementia. She shares her worries about her mum's quality of life while there are visitor restrictions in place for care homes.

Jane used to visit her mum, who is living with dementia, every day in her care home. Since the outbreak of coronavirus, however, all visits had to stop.

Like so many other people, Jane has watched as the effects of this social isolation cause her mum’s dementia to worsen day by day.

Jane has written a poem about her experiences over the past few months, highlighting so clearly what it has been like not to be able to visit and care for her mum as she used to.

I’m losing my mum to Covid

I’m losing my mum to Covid,
but not as you might think. 
It’s been four long months now,
but not as you might think. 

Mum has vascular dementia,
I’d visit her every day. 
But now because of Covid,
they are keeping me away. 

Mum is my 3-year-old child,
she just doesn’t understand.
It’s a very cruel disease,
why I’m not there holding her hand.

At the very beginning,
I stayed away to not tempt fate. 
Her physical health was frail,
and we needed to isolate. 

But as the days turn into months,
her quality of life is fading away. 
It feels like our last precious moments,
have been truly stolen away.  

I was her eyes and ears,
when her hearing aids were left out.  
She was trapped in her own little world,
and couldn’t hear me shout.  

Or hearing aids were in,
but the batteries were dead. 
Or batteries ran out,
so sounds couldn’t reach her head. 

We’d watch repeats of NCIS, we’d watched many times before. 
She “watched” through closed eyes. 
I squeeze her hand and stroke her cheek. 
She smiles a rare smile and speaks a rare word – a real prize. 

I got the dreaded phone call,
just after I’d woken up. 
“Mum's collapsed”, “She’s stopped breathing”,
“Paramedics are here.” Was this it? 

My heart went into overdrive,
what had they just told me? 
What had really happened?
Please, please tell me. 

I spoke to the paramedics,
gave them her full history. 
I said it sounds like Vaso vagal,
so it’s not really a mystery. 

Lockdown put aside,
I rushed over to take a peek. 
Gowned and masked I sat by her side,
held her hand and stroked her cheek. 

She recovered soon after,
her breathing hadn’t stopped. 
It was just very shallow,
her pillows need to be propped. 

Every day I dread that call,
jump when the phone rings. 
I know she’s 94 and has had a great life,
but it’s not time for her to have wings. 

Mum rallied again,
she’s a real fighter. 
Beaten infection after infection,
but her weight is much lighter. 

How long can she survive,
and can her frail body withstand?
As I long to stroke her cheek,
and sit and hold her hand.  

I talk to her every day,
but mainly she just listens. 
On a good day I get a few words,
and my eyes truly glisten. 

We’ve tried FaceTime and Skype,
but the signal is not good. 
She’s just not sure where to look,
and why we are not there – we would if we could. 

I don’t want her to think she’s forgotten,
but I know she won’t remember my calls. 
I need to know I’ve done all I could,
to make her last years happy, within her four walls. 

After ten long weeks I can visit,
20 minutes will be my allocation. 
And we can chat and smile,
at least it’s less isolation. 

But reality was very different,
open your lovely eyes Mum, look at me.  
“Look at these lovely roses,
I’ve picked them from the garden." 

"Please talk to me, please look at me,
I can’t come back for another month.” 
This is our only time together,
but Mum slept on exhausted. 

After 20 minutes they wheeled her away,
I was openly sobbing, at the chance we’d missed. 
And nagging thoughts “Would I see her again?
Would this be the last memory – not to be kissed?” 

I’ve written pleading for more access,
but both requests were denied. 
20 minutes once a month,
seems worse than a prisoner, I cried. 

My mum has been abducted;
she’s been locked away. 
Will the police or my MP help me,
what about our say. 

Covid is not going away,
for “anytime soon”. 
Will mum still be locked away,
alone in her room. 

“Dementia patients 'deteriorating' without family visits”,
Alzheimer’s Society say. 
They have written to the health secretary,
but still no change today.  

How many more families,
will suffer loss and death apart?
This whole situation,
it just breaks my heart. 

Will you write to your Councillor about care home visits?

Alzheimer’s Society have developed key recommendations for local authorities to take into account when supporting care homes to reopen safely for people affected by dementia.

You can help by sending Alzheimer’s Society’s briefing to your local Councillor, to make sure our calls are seen by the right people in your area.

Write to your Councillor
Dementia Connect support line
Our dementia advisers are here for you.
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44 comments

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I can relate so much to your poem, sadly my wonderful mum was unable to be without her family, I truly believe this, She was in a care home, we visited daily but my mum deteriorated rapidly starting mid May, she stopped eating, lost nearly a stone in weight, although she had vascular dementia she was ok, it was her mobility that was the main problem. I called daily and FaceTimed weekly, I was able to go in to see her on 14th July as the care home was so worried about her but it was too late, she was a shadow of her former self, slowly disengaging with everything, she slept a lot, wouldn’t eat or drink, she passed away in August, I’m absolutely heart broken , I cannot accept that I was unable to be her in her final months of life, we were very close, her granddaughters were unable to go and visit and they were her world, the care home did allow us to be with her in the last days of her life for which we were thankful for, I just hope she knew we were there. I just hope care homes find a safe way for relatives to visit, It’s absolutely vital residents have contact with their loved ones.

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Hello Angel,

We are so sorry to hear about the recent loss of your mother - this must be a very difficult time for you and your family.

Please know that you can always call our Dementia Connect support line on 0333 150 3456 for support. More details (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

We also have an online community, Talking Point, where carers and other people affected by dementia can share their experiences and receive peer support: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

Wishing you all the best,
Alzheimer's Society blog team

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It is so nice to realise my sister and I are not alone. My sister and I looked after mum for five and a half years until we knew she needed more than we could give her and she went into a home June 2019. The home we chose is wonderful and after a shaky start she settled down and loved it. We like to think she felt normal again as everyone around her were the same. However Covid reared it’s ugly head and our daily visits to mum stopped. At first mum seemed fine but now she is losing weight as she doesn’t want to eat drink or take her meds. We are struggling so much not being able to be there when we promised we would always be by her side on this awful journey and would be her memory for her. We have made the decision to bring mum out of the care home and have a live in carer for her with once again our daily support. We have been lucky we have sold mums house so have the funds to do this. This coming Tuesday she is coming home and we are terrified and excited all at the same time. We just can’t wait to hug her and stroke her hair as she goes to sleep at night. Keep strong everyone. Christine and Jackie xx

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What a poem amazing as it captured how I to was feeling. Then just as I was wrong my comment .....I got the dreaded missed call from the care home. Thankfully Mum still with us but GP stopping all medications ....why ...well she is sleeping a lot .
It's my 20 min visit tomorrow , so brave face on .

COVID has destroyed our time with our loved ones.

I send everyone a hug and let's hope they find a way of us seeing our loved ones...I believe we should be tested the same as care staff ...so we can have a visit indoors and to be with them

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My Dear Jane,

Thank you.

I’m experiencing a situation with my Nanna. To say this time has been isolating both physically and in the way of emotions is an understatement. You’re piece made me cry so hard it came out with such a gut wrenching sound, but I am thankful for that. Thankful to know that my Nanna and I are not alone. Please know that you and your mother too, are not alone. Even when it feels like we are anything but.

I was a carer for my Nanna who also lives with dementia. A very serious fall has left her in hospital for the last few weeks where I haven’t been able to be with her or talk to her. On Friday she starts a new phase of her life in residential care. That in itself is such a scary prospect. When will I see her again? Does she think I have abandoned her? Will the care home have a COVID outbreak? Will she be taken care of in the way I know she deserves to be? So many questions, and being left in such limbo is terrifying.

I’m sending you both lots of love and hoping we will see the light at the end of this before long. Thank you for sharing your experience.
Xxxx

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Hello Chloe.

We just wanted to say thank you for your comment.

Please know that you can always call our support line if you need someone to talk to during this upsetting time with your Nanna.

Our friendly dementia advisers are here for you to provide information, advice and support on 0333 150 3456. More details about the Dementia Connect support line (including opening hours) is available here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this is helpful,
Alzheimer's Society blog team

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The poem says it all .
My lovely mam is tormented with Alzheimer’s disease and was being cared for at home by myself and her carers but COVID 19 lock down meant that I was unable to go to see her and the carers took over full time for 14 weeks or more - she was well looked after by them and they video called me with her regularly but her ability to communicate verbally is very limited and she didn’t really understand- when I was eventually able to go to see her it was clear she had deteriorated so much and as a result has now had to go in to residential care to keep her clean and safe 24/7 - the times at home she was alone were clearly spent not sleeping and wandering not understanding why and what was going on knocking on her window at passers by distressed saying she was locked in -the police came and got me a few times and neighbours were concerned ringing me at all hours it was so sad to see this once extremely intelligent, popular beautiful lady lose her dignity like this .
At the care home because of the restrictions she had to be isolated for 2 weeks at first but I can now visit her for half an hour a week wearing full PPE at a safe distance - although she usually recognises me I can see the confusion on her face and the hurt in her eyes when we can’t hold hands or hug like we used to and that was the only communication that she really still understood she would always respond to a hug and a kiss but because of Covid 19 its being taken away from us -I’m losing her 😢

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I feel this lady could be writing about me and my mum. I haven't been able to touch her since April. I am only allowed external visits where I stand outside a window and talk through the window. Video calls are difficult and mum doesn't seem to be able to engage with us. The home has again cancelled all visits even though I don't touch her, I can't stand anywhere near her it's about 8 feet away. I feel I have no say in her care. She is not under my care at all and I wonder if I have already hugged her for the last time.

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My wife has been a beautiful person for the 70 yrs we"ve had since age 15 wed at 18...now she is like a 3/4 yr old...I"m her carer...dreading losing the ability myself....I maintain some "normality" by constantly telling her I love her now more than ever...and she tells me the same...no matter about the past..my duty is to make each day as happy for her as I possibly can...and it works for ME...I hope it can for you dear reader...love to all...Red (Redmond) Nolan...X

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I feel your pain. I lost my mum in April, locked away with Alzheimer’s in a care home with no understanding , it’s truly heartbreaking, I’m trying to cope with grief and extreme guilt I couldn’t be with my mum. I lost my dad in January too.

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This sounds so familiar, we are lucky enough to have 30 minutes each week but dad no longer has any idea who I am, COVID has done that to him, who are you he asks. He survived and recovered from this dreaded illness but is so frail and confused, what quality of life does he have left. Is this all our time left with him will be! It a relief COVID didn’t take him but what has it left in its wake!

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My heart goes out to all on here, a truly awful time. I resonate absolutely with Jane and wonder where our strength comes from to absorb and deal with this serving of life. My parents will celebrate 60 years of marriage next month, Mum in a care home with a weekly 30 min visit and my Dad, still alert but ageing, living alone and left wondering! Strong as we try to be for our families sometimes it just doesn’t seem fair.

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What an amazing collection of personal experiences and the adverse effect of lockdown and loved ones in Care Homes. There is something which resonates With each of the children moments in terms of with my personal experience with my mother who is 95 years old, has dementia and has been in Lockdown in a Care Home since March. My summary of the past few months is:
- it’s going to be very difficult to forgive the government and their medical advisors, particularly psychologists, for underestimating the trauma those elderly care home residents Have been through.
They have survived the actual Covid -19 Viral pandemic but have been Deprived of personal contact with their loved ones for months and as a result deteriorated both mentally and physically during that period
- they are a generation of trauma survivors and should have received additional rehabilitation support to help their recovery.. instead they have been deprived of exercise and mental stimulation for 6 months and abandoned to the
Daily care of staff, not trained to provide this Specialist support and forgotten by the government and CQC. They have been denied access to their loved ones who could make a huge contribution to their rehabilitation process.
- I agree with those who highlight the fact that the carers come and go with no restrictions on their use of public transport going home to small flats providing shared accommodation. It is not rocket science. With adequate focused planning the government and medical advisors should have capitalised on this vital support Available from family and friends Ensuring that they are subject to the same guidelines as the carers and administrative staff and allowed in on a regular basis
- I also agree with the contributor who suggested that perhaps the reason there has been such a delay is that some Care Homes are even more understaffed than pre the Covid virus. This certainly true in my mother’s care home which is run by Care UK. This is shameful, there could never be a time when elderly care home survivors need more care from well trained staff rather than less.
- what kind of civilised society establishes a regulating and monitoring body which is actually funded by the Care Providers? Is it any wonder that the CQC is a toothless regulating body in the U.K.?
- government and medical advisors need to wake up PDQ to the fact the majorly of families with loved ones in Care Homes have NOT Chosen to abnegate responsibility but for months have been denied to do so. In the unprecedented situation we are currently in, the standard of care is falling. As relatives we are sounding the alarm and calling the government and advisors to account to address this problem as a matter of urgency. We need to do this collectively.

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It's been a dreadful number of years. My loving funny always busy lovely husband had all this taken away from him by early onset dementia and depression. In March i agreed with the professionals that my lovely husband needed more help and support than i was able to give him. This was the hardest decision i have ever made. On 20th April i took my lovely man to our chosen residential nursing care home. He died with the virus me by his side on 24th of June. So many questions how did he come into contact with the virus, why did I send him to potentially his death and how will I live with this.He may still be here if he stayed at home with me

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You should not have feelings of guilt. You did what you thought was right at the time. You could not foresee the outcome. God bless you.

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Oh my heart is breaking as the words of the poem is describing exactly what is happening with my mum in a care home I didn't see her for four months because of covid 19 then I got 2 half hour visits last week wearing full Ppe gear I couldn't hug or kiss her and it wasn't in her own room which I think was awful. Tho she has vascular dementia the manager told me that my mum was very confused and when she is talking all her words are mixed up so I have to guess what she is trying to tell me it's so sad when I look at her eyes she just looks lost dementia is so cruel disease I just wish things were back to normal so I can see her more and be able to help her more I no the staff are fantastic but I'm her daughter and I think she is starting to forget me
I'm truly devasted but I need to be strong for her.
😘 😘 X

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It is awful to say and I feel guilty saying it but my wife died of vascular dementia, She was 72, once so beautiful and charismatic. The thought of not being able to visit and see her, hold her hands and kiss her cheek would have broken me. Until the last wee that she died she always remembered me and had a lovely smile. I am so sorry for ll you suffering relations. All I can say is remember the good times you had

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My Mum also had dementia and passed away in April of this year I feel your pain it is beyond me to understand what these poor woman suffer my mum was in and out of hospital all over last Christmas and the new year she just did not want to eat so in the end they could do no more I was fortunate that I stayed with mum to look after her with the help of equipment and Carers in place I could give her the attention she craved although bedridden I would get the occasional smile and was left with a little bit of mum when she passed I know i did all I could for her ,I am sure you are doubting yourself with the situation you are in and it hurts I feel for you i dont know how i would have coped not seeing mum in her last days and hope you get to see more of your mum before that time comes ,at first I was ridden with guilt because I wanted her to pass in the end to rid her of the hurt and the indignity and confusion she was going through and it has helped me to help other sufferers around me I hope you get to spend time with your mum you are in my thoughts

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Janes poem really struck a nerve for me as unfortunately due to covid and the inforced but necessary lockdown I lost my husband on Easter Saturday. The home that he was in was amazing but he just stopped eating and drinking and not being there I couldn't help persuade him.
I wish her, her family and especially her mum all the love they deserve.

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