Dementia Support Line
Real stories
A dementia poem about my mum and 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 when there were visitor restrictions in place for care homes.
Jane used to visit her mum, who is living with dementia, every day in her care home. When the outbreak of coronavirus hit, however, all visits had to stop.
Like so many other people, Jane watched as the effects of social isolation caused her mum’s dementia to worsen day by day.
Jane has written a poem about her experiences, 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 help us Cure the Care System?
Let’s make sure that people with dementia are able to access the care they deserve, when they need it. Become a campaigner today.
Elenar Ithilwaya
saysInstead of making care homes out to be the villains, maybe you could highlight the problems the homes have trying to find compromises to balance allowing visiting and protecting the other residents in their care. I’ve seen a family scream in a care home manager’s face because another family was allowed to visit a resident who was dying and the visitor might have COVID19 and would potentially cause their loved one to become ill. You can’t make everyone happy.: visiting pods are too restrictive, there should be no visiting at all, asking visitors to wear PPE is wrong, visitors aren’t made to wear enough PPE, etc.
Jane smith
saysAs said - this poem is my perspective and 1 year on mum has deteriorate further. my second poem reflects this
I first blame gov for vague guidance which they won’t mandate then poor care home CEOs for their interpretation. Some care homes safely enable safe family access and recognise impact of well being snd importance of family so why can’t all? It’s a Human Rights Atrocity affecting my mum so why should I want to support poor care homes who are complicit ? I praise good care Homes who support safe family access - especially when many residents and relatives have had 2 doses of vaccine and take tests snd wear PPE. Currently I see mum who is now EOL for 1 hour a week and she’s often asleep - this is BARBARIC snd InHUMANE - where are mums Human Rights to family contact 💔
Annie Nelson
saysHi Jane I saw my mum today for the first time in 3 months ... last time I saw her she was confused but still knew us ... my sister had seen her a few times & we did video calls ... however nothing could prepare for what I saw today ... she is well cared for but has lost so much weight ... doesn’t know us what so ever any more ...we’ve lost our mum even though she’s still loving ... my sister is a care partner which is good ... but the visiting protocol is too cruel .. she can’t sit as she constantly paces and wanted to leave the room ... we need to be able to take our parents out for a visit & spend as much time as possible with them while we still can ... I just couldn’t do another visit watching her through a screen ... heartbreaking
Katie
saysGosh this sums up exactly how I feel. My mum moved into a lovely care home 6 weeks before the first lockdown, but up to that point had been living with us. We went from 24/7 contact to none at all (understandably at the time). She deteriorated rapidly, despite video calls and some garden visits in summer, until I lost her in October 2020. Covid stole those precious last few months I could have spent with her, and who knows, she may even have had more months, had she had regular and meaningful family contact. I feel so sad for everyone in this situation, but at least now there is a light at the end of the tunnel.
Sharon Port
saysKatie I understand exactly what you going through. My mum left hospital and went into a nursing home and for two weeks she was put into isolation. We could not visit. She went downhill and died in isolation . I went from seeing her constantly in hospital and holding her hand and chatting but she died alone and frightened as she was just left alone with out my visits to reassure. Because of covid restrictions I was robbed of the precious time I should have had with my beloved mum.
Louise
saysThis poem has had me in floods of tears... I never comment on these threads but it resonates so much with me
My mum had frontal temporal lobe dementia and my dad cared for her at home for 7yrs before it became too much and she moved to a care home in March... we were unable to visit for 14 days initially and then everywhere locked down so it was July before I saw my mum in the flesh and she had deteriorated massively in that time and lost a lot of weight.
My dad was allowed to visit once a week until August (only one designated visitor allowed) and then the home locked down again and it was the end of October when I saw her again in A&E after a fall. I will be forever grateful to the NHS staff that allowed me to sit with my mum in A&E as those 6hrs were the longest time I'd been able to spend with her for seven long months. I'm not sure that my mum actually knew who I was anymore but we ate chocolate biscuits together, she smiled at me and I got to hold her hand for the first time in what felt like forever....
There was a covid outbreak in the care home in November and despite testing positive mum was asymptomatic but also stopped eating and drinking - I was allowed to visit now because she was dying 😔 She was sleeping every time I visited and I was in full ppe so I dont think she would have recognised me if she had been awake... I wasn't allowed to touch her but I sat on the bed and stroked her hair and held her hand anyway - my mum died on 28th November at the age of 66 and I feel so guilty that I wasn't there, upset that she would have been confused about why we abandoned her, and so so angry that covid and restrictions robbed me of spending time with her
This situation is so cruel and unfair... dementia is cruel and unfair enough without anything else being added to the mix
William Hunt jr
saysMy wife's decline seemed very much like the true love of my life. She stayed with me until she passed. It’s a terrible feeling and watching the decline daily the last few months she was alive. I hope I can join her in the eternal life after death. One of her doctors told me they may be chasing the wrong culprits, he thanks the same research
should also be about Tau.
Donna Toplass
saysMum became psychotic weeks before the 1st lockdown...that was the last time I hugged her. We took her to a special unit out of county to get her better, she got pneumonia, delerium, UTi and covid, and was passed from one hospital to another until she was well enough to go into her new care home. Window visits and watching her determinate, physically and mentally carried on. UTI and delerium and more hospital visits and she fell off a trolley in a and e 3 weeks ago and broke her hip made it through the op and was just about to go to another new care home for her needs when covid and pneumonia have put her in hospital....still semi psychotic...but I've got to say I love you and she said the same back which has given me comfort as the drs have no idea if she will survive. I may never get the chance to hug mum again. It's been heartbreaking not being with mum throughout all of this last year and watching her suffer from Alzheimer's and being separated from her family when she needed us the most. I really do feel for everyone in our position not able to have access to our parents.
Sam BC
saysI am wracked with grief and loss and guilt.
I start every day with a lump in my throat and a knot in my stomach that does not abate.
All the things that I should have done differently whirl in my mind.
Should I have asked you to come and live with us at the start of lockdown? Part of me knows you’d have said no to that. Your independence despite frailty amazed me.
You did so well in lockdown. We were all so proud of you.
Was it the start of dementia that made you behave differently toward the end of summer? It had been a gradual process since 2019 but it had intensified.
You almost came and stayed here for a couple of days but changed your mind. I wish you had come.
Or was it the build up to the stroke that made you that way?
How aware were you after the stroke? How much of nanny was still there?
You knew me when you saw me but had forgotten so many things and were confused.
Were you there, waiting to recover or had the stroke and possible dementia changed things forever? We were trying to get you the assessment you needed, a constant delay due to coronavirus.
After the stroke, did you have to be discharged into a care home or could we have tried other things? I am too scared to ask mum.
Could we have tried you back at your flat with increased care or would it have been unsafe for you?
Should one of us have taken you in to see how you were? Should I have done this? Would I have coped? Would you have let me? I was scared to put you at risk with the children here but I am ashamed we didn’t discuss it.
If you had come here I am sure the others would have helped but would you then have been exposed to coronavirus and other risks here or with anyone else? Two of our family got covid in that time but of course you did not know that. The stroke confused you and you could not remember the virus you’d been so conscious of. This pandemic made so many things that much harder.
As your granddaughter I am told that none of these things were my decision to make. I can’t help feeling responsible.
You were confused and upset when I last saw you in person before Christmas, behind a curtain in the home. You recognised me but couldn’t remember lots of things. You didn’t want to be there and told me you wanted to die. Its hard for me to know whether that was the stroke or dementia or whether the combination of the two with lack of meaningful family contact made you feel this way. I fantasise about leaving with you that day, just taking you out with me.
We all wanted you home for Christmas Nan. We really, truly did. We were told no. That it would be a risk, that you’d then have to isolate in your room alone after returning.
Please know that we were trying to keep you safe. Then lockdown made the decision for us.
We had started talking about getting you out. At first permanently but I think in our hearts we knew that this would be hard to manage. Then thinking, respite, until this passes. Nothing was easy, so many conflicting thoughts and views. We might need social services to approve. How long would that take?
We were trying to find the answer to an impossible question. Clinging on to hope now that you’d had the first vaccine that things would change soon, things would be so much easier and better once we could have proper access to you, visit you, cuddle you, bring you out for lunch. It felt like we were so close to this. Hold on, we are nearly there, it will all be better soon we promise.
The chain of events hit like the onslaught of a nightmare.
Spring 2020: you cope so well with lockdown in your flat
Summer 2020: you are doing great but there are some changes to your behaviour that are concerning
Oct 2020: you acknowledge things are changing. You agree to try the care home to see how you like it. It goes ok but you are not ready. You go home.
22nd Oct: you have a stroke
Early Nov: you are discharged to care home. You are confused.
Nov - mid Dec: visits behind a screen only
19th Dec: national lockdown, no travel
21st Dec: positive case at the home, no visits. Christmas hope gone.
Jan 2021: window visits only
15th Jan: outbreak at home, isolation, no visits
25th Jan: you test positive
26th Jan: you are admitted to hospital
We all try every day to get access to you in the hospital. We explain you are vulnerable and confused. It’s hard to get someone to even answer the phone. It was unbearable. Is still unbearable to think of.
We are told no, no, no. Access is only granted on compassionate grounds.
The thought of you there alone, not understanding what is happening is killing us all. It sounds awful but I hope that the delirium had set in then and that you were not too aware of time and your surroundings.
Mum is allowed to visit you on the Saturday. She says you were not really there. We came to the hospital Nan, we were all there outside in the car park. I took a card in and tried to get to see you. They said no but offered me the chance to speak to your nurse on the phone. I was too upset and said no, I thought it would be more distressing to be told no again. God Nan, I wish I had. I wish I’d begged and pleaded with her .
We wait. Desperate for the call we don’t want to come.
I am grateful that we got a chance to say we love you. That I could stroke your head and hold your hand. I think you knew we were there. I hope you knew how desperately we wanted to always be with you.
I am glad that I my sister was with you at the end. I think you would have been too.
I love you so so much and will always regret the way things ended for you. I am so sorry Nanny. I wish with all my heart things were different.
I hope you are at peace now with grandad and your sisters and brothers.
You will be with me forever x
Ann lorraine Hanshaw
saysMy 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
Anonymous
saysWe 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
Sharon Hickey
saysMy mum had been in a care home for about 3 years she had moments where she forgot things like my dad dying etc.. But she contracted covid in there and died within a week 16th January 2021, am gutted and heart broken why didn't they check staff properly... So angry with the home. HOME Never said sorry. I could not visit much last year due to restrictions now it's too late.
Patricia
saysMy mum was in a care home too. I stayed with her the night before the lockdown in March up until 11 pm. I didn’t want to leave her. The next time I saw her was in July when she was taken to hospital. she had brain injuries caused by falls during lockdown. she’d never fallen before. She passed away in hospital on 3rd August 2020. My brother had died of COVID 19 on 7th May.
Sara collier
saysThis 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 😥
Joe Richards
saysHello. I am so so sorry to read your story. I don't even know how I ended up on this website. I do not have a parent in a care home, but I want to share my deepest of deep sympathy for your situation. I lost my dad suddenly last year and I can't see my mum at the moment while she grieves alone. This is not the same situation at all, but there are more people than you think suffering different difficulties at the moment, and I say this ironically to sound comforting. We can feel less alone when we know that there are so many people suffering at the moment and I do believe that now or later, your mum will feel you with her and feel comforted by that, too. Sending you warmth.
Marg
saysIve 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.
Sandra Holmes
saysMy 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.
Angel
saysI 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.
Anonymous
saysHello 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
Ann lorraine Hanshaw
saysI 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
Christine
saysIt 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
Kay
saysWhat 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
Chloe
saysMy 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
Anonymous
saysHello 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
Kath Belchamber
saysThe 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 😢
Alison Drew
saysI 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.
R Nolan
saysMy 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