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. 

Government must take urgent action

Help us maximise MP engagement in our upcoming parliamentary debate by writing to them to ensure they take part. 

Write to my MP
Dementia Connect support line
Our dementia advisers are here for you.
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My mum went into a care home after several water infections and delirium to get her back on her feet.
She was covid free on going in then covid was found to be in the home and after my mum had settle for 3 weeks caught the virus and within 10 days I had lost her. 8 weeks now and not a ssy goes by i am not affected.i miss her so so much.
I am devastated
Although I was with her at the end.i am lost without my beautiful best friend
My mum x

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We are so sorry to learn about the devastating loss you're dealing with. This must be an incredibly difficult time for you.

Please call our Dementia Connect support line on 0333 150 3456 if you need any emotional support. Our dementia advisers are here to listen when you need them: https://www.alzheimers.org.uk/dementia-connect-support-line

Some people also find it helps to talk with other people who have gone through or are going through similar experiences. If you think this would help, you can visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/

We hope this is helpful.

Alzheimer's Society blog team

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This horrific my mum is dying from dementia she has about a week left I habent held her hand since March...lockdown has killed mum mum and my soul too I am heartbroken broken the care home is letting me in tomorrow because my mum has days to.live I will take this to.my grave I am inconsolable my poor mum.must think that I abandoned her in her final year I'm so angry and heartbroken 😥

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Ive just read all these entries sobbing as I felt everyone's pain, but comforted that I am not alone with these feelings. Often when I visited (many many months ago) it felt as my mum was giving up, by the end of our visit she perked up as if she remembered she did still have a reason to go on and people to care, tragically I now cant visit and Im told she's "depressed", Im terrified she's giving up and feels abandoned - the guilt and feeling completely powerless to do anything is overwhelming. Thank you to everyone for sharing your stories and my heart & soul really really understands.

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My heart breaks for everyone, My mum is in a care home with dementia but she loves going out and hates being locked up the initial lockdown was bad enough then came a local lockdown then they finally they resumed distant car park visits with her being in the foyer of the home at the end of August then 1st week of September lockdown again because of cases of Covid then last weekend got a call to say mum has tested positive she’s on antibiotics for her chest but the confusion and her lack of spirit she’s saying she’s going to die there please don’t forget me it’s tragic.

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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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I wasnt allowed in last few days as they thought mum was ok. I went in on a Friday lunchtime because I begged them to let me in and she died the same evening.
It hurts so much.
This was 30th october. Dont think I will ever get over it x

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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.

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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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