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.
Jackie Mcgorum
saysMy hubby was taken into hospital under Section 2 of the mental health act in July. Unfortunately he started with aggression which had to be sorted but it was like giving him a death sentence. In 5 weeks he is incontinent, sleeping all day and barely eating or drinking and they now say he is at ‘end of life’ and can come home with carers in place. It seems as if he’s coming home to die. Can’t believe how quickly he has deteriorated while he’s been away. I believe being away from his loved ones with no physical contact, because of this terrible pandemic, his life has been cut short - he’s only 73. I’m praying I can get him home before it’s too late
Sharon Papish
saysThe same thing is happening to my sister😥.They always say it’s policy!! Some of the other facilities allow masked visits but where my sister is had not had any cases of Covid! But she needs us, her family and we need to be with her!! She has gotten worse since all of this started!! We call and talk to her but it’s just not the same!! She hears a familiar voice but that’s all, it’s better than nothing but she needs her loved ones before it’s too late😭
Carol
saysCrying reading this . The very same is happening to my mum it is so so sad my heart goes out to you . Are hands are tied it is an impossible situation all those visits missed x
Mary Fok
saysPlease can something be done about this? There must be a way for more regular visits. If the daughter and the mum don’t have COVID-19, why can’t they have time together?
Hi Mary
Thank you for getting in touch.
We hope to offer you some reassurance that we are doing all we can within our political and campaigning efforts to make care home visits work better for families affected by dementia.
We currently have a campaign action that you might like to get involved with. Following the Government guidance that care home providers should work with Local Authorities to determine visitor policies, we created a briefing with recommendations (https://www.alzheimers.org.uk/media/31061) that ask local lead members for health and social care to take into account the impact of restricted visits on people affected by dementia and their wellbeing. You can get involved by sending our recommendations to your local councillor – it is a very quick and easy process: https://e-activist.com/page/65258/action/1
Your councillor should then be able to take our recommendations to the relevant lead members for discussion and consideration.
We hope this is helpful, Mary.
-
Alzheimer's Society's Policy, Campaigns and Partnerships Team
Byron Thiel
saysWith me it’s my wife who I,ll have been married to fifty one years Sunday week 30th August. Have my third one hour garden visit scheduled next Tuesday. The local care home is very good, but despite this she hates being kept prisoner(her words). To add to this she was taken into hospital recently with a minor infection so hsd an extra fourteen day isolation added which she needed like a hole in the head. Took her SIM card out of her phone as she has no reasonable phone conversation any more. She was fairly recently diagnosed with vascular dementia and the medicine prescribed seems totally ineffective. Even more worrying is the fact we coukdn,t celebrate our fiftieth wedding anniversary last year as at the time I was recovering from a cracked pelvis in Trafford General Hospital while wife Sue recovered from a broken kneecap in Wythenshawe Hospital about ten miles away, but the powers that be woukd not put us in the same hospital so we could celebrate properly and it looks very unlikely again this year. As she’s only seventy three to see her deteriorate so rapidly means so many final chances to be with her are vanishing each and every day. I am grieving every day for I know the outcome of this as her own dear mother died from Alzheimers in 1998. I,m feeling damned frustrated any way and all these rules and restrictions are killing me as well.
Janet Fredericks
says((hugs)) my Mom passed away in April in LTC, with dementia, also. We believe she died of loneliness. It was 6 weeks since we could see her, but before Covid someone had been there every day. It is horrible that residents can't see their loved ones. Keeping them isolated might keep Covid away, but at what expense to their mental health?
Paula Cherry
saysMy sister and I visited our mum every day, all our adult lives, even after leaving home, and when she went into a home, the hardest day of all 3 of our lives, we still went each day, to have that stopped would have been unimaginable and truly devastating x
Julia French
saysYour words, written from the heart and so true. I lost my Mum in January to dementia which broke my heart but I would have been heartbroken to have not been able to visit. These visits are so important to both parties and as long as the visitors are well the gain of a visit is immeasurable and most definitely should be allowed, I wish you well with your fight. X
Veronica Gardner
saysMy niece and nephew never wanted their mum my sister to go into a care home they were willing to care for her in her own home for as long as they could but they never in their wildest dreams expected to witness so much pain. It broke their heart and all her families when she finally had to go into a nursing home.
That was in March this year.
Then what should have been good for her and us turned into a nightmare!
No visits and when we did get to visit it was horrendous because in just a few weeks she had deteriorated so much it broke our hearts. She's only 76.
Family needs to be treated like carers at the home, our loved ones need physical contact from their families now before we lose them completely.
Marion Hassett
saysTests are available for a more “instant” result to tell if your a carrier. But not to the general public. If my Mum dies before l see her, how do l live with the guilt lve “abandoned” her.
Please please let us see our loved ones. I need to see and hold my Mum.
Another sufferer
saysI have just had the same experience not being able to see my husband for 15 weeks after going every day for 2 and a half years. Then I received the call to say he had passed away on he's own. So my heart feels so deeply for everyone in this position be strong
Christina thorpe
saysI keep asking over an over again why cannot the next of kin be the same as the carers an have a test each an every week an the go in an do the same as them but no one cares
Cathy Mayes
saysSo difficult to know what to say and so many instances of loved ones being separated at the end of life when it is necessary to say goodbyes and be there to share the pain of parting. Is the reason because there is not enough PPE to go around I wonder. It has always been a case of gowning up if visiting someone in ICU for example, so why not now? There must be a way of making visits possible, staff are in and out every day and going about their business and most going home to families, returning to their care role the next day. With the right precautions taken this should not be happening.
Yvonne Clark
saysOh, Jane thank you for sharing what is a horrendous time for you and your mum. My heart goes out to you. I'm breaking my heart after reading your poem, it could have been myself and my mum. Especially about the ear aids, that was a regular thing I did. I lost my mother during lockdown, May 9th. Hadn't seen mum for weeks, then was called in at the end to hold her hand. My mum had vascular dementia also and like yourself I only had contact by phone. Sometimes she would sleep through the call, other times would seem alert but couldn't understand where I was as the phone confused her. She lost the ability to make a sentence, was the lack of stimulation and conversation. In the end it was a water infection that took her, I have difficulty understanding that. But I know my mum gave up. She depended so much on me. Like you I felt my mum was alone and frightened and Im sure she felt I'd abandoned her. So I understand your pain and your sheer frustration. There must be more funding given to the homes from the government to aid this communication. I think the staff that are payed to do activities should be given extra hours to facilitate this. When my mum was very poorly at the end I was given an appointment for facetime with her for 2 weeks away, I said mum won't be here in 2 weeks and she wasn't.
Again my heart goes out to you and best wishes. Stay strong, it amazing how we get the strength to cope..... Just as well. Sincerely I hope the government sort this out.
Jenna Noad
saysSo spot on! grandad had it he passed last month 😥😪😟
Ruth
saysWe lost mummy to Alzheimer’s three years ago and I can not imagine what these families are going through. It’s heartbreaking. I hope that some provision can be made for them to visit soon and often and as safely as possible. People with this horrid disease aren’t getting better and they need their families and their families need to be allowed to care for them as much as they can.