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Phoebe and her mum, Anita

‘It was clear Mum’s dementia was accelerating rapidly’ – dementia during coronavirus

Phoebe's mum, Anita, moved into a care home during the pandemic as her dementia symptoms quickly got worse. While still waiting for a formal diagnosis, Phoebe tells the story of their difficult year apart and an emotional reunion.

My mum started with a few symptoms a couple of years ago. It was just silly things like forgetting where her glasses were or repeating herself a few times. 

I took her to go visit her GP who insisted nothing was wrong and her memory was fine. That was a bit frustrating for me and our family. We know my mum more than anyone and see her day in, day out. We knew something was wrong. 

‘My mum was relieved, but I think she knew deep down that things weren’t right.’ 

Anita Roberts

Phoebe's mum, Anita

Waiting for a diagnosis

Then in March 2020, the start of the COVID-19 pandemic, things got rapidly worse after Mum was admitted to hospital for something completely unrelated. She started expressing a lot more confusion in hospital which led to her being kept in for six weeks. This clinical environment, teamed with the fact nobody could visit her, really affected Mum and her illness started to spiral. 

It was clear that things were accelerating rapidly. My mum was admitted to a care home for respite and to await a full diagnosis of what type of dementia she has. This wait has been a frustrating and distressing process.

‘My mum has been in a care home for over a year now, and we are still not fully diagnosed with the type of dementia she has.’

We have been told that my mum has suspected Alzheimer’s disease, but this hasn’t been confirmed as of yet. The process is so long and distressing for all involved.

A lot of this has been due to my mum not being able to get hospital appointments for scans due to coronavirus. When she finally did get an appointment earlier this year, she really struggled to sit still in the MRI scanner for 30 minutes. It’s a very loud, unsettling machine in a confined space. This is a hard task for anyone, never mind a person with dementia. 

A year lost to lockdown

My mum is 63 years old, and is now in a care home with 24-hour round the clock care. She is a shadow of her former self and is unable to do things for herself.

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Prior to this, she was the life and soul of any party. An independent, beautiful soul inside and out who would do anything for anyone and loved adventuring around Yorkshire with her family. 

From March to December last year, I was only allowed to see Mum through a window. I was outside,  she was inside. I would wave and speak to her through the phone, which the carers helped her out with. 

I’m so close to my mum, and I’m used to seeing her everyday and doing everything together. I was able to video call Mum but a lot of the time this made her more confused due to her not understanding why I couldn’t see her properly.

‘I’ve lost over a year with my best friend – time I will never ever get back.’

A collage of two photos of Phoebe and Anita

Our reunion

Mum and I were reunited around 6-8 weeks ago. I was warned that she had deteriorated a lot. That she may not recognise who I am, so not to get my hopes up. 

I had to go inside with full PPE on – mask, gloves, visor and apron. So when I first stood at the opposite end of the corridor, my mum looked at me and said, ‘Who's that?’ 

‘I shouted, ‘it’s me Mum!’ She came running then – hugging me, kissing me. She started sobbing saying she thought she would never see me again.’

She grabbed hold of my hand and we went for a walk around the unit. The rest of the reunion was difficult as Mum struggles to hold a conversation and also struggles to sit still, but I’ll always cherish that first moment. 

I visit the care home twice a week now and spend a few hours with Mum. Sometimes she has good days, sometimes bad.

Last week we had the most amazing time, she had music therapy. I asked them to play ‘Mamma Mia’ as I know Mum likes that song. A therapist played guitar and I sang. And soon enough mum was singing along with me remembering every word. Another magical moment.

Need for support

I don’t think there is enough support for people living with dementia. Especially younger people. My mum is only in her early sixties, and she has been in a unit with people a lot older than her. She been really isolated and struggled to interact. I don’t think this has helped with her rapid deterioration. 

The main comfort I’ve seen is from this website – reading other stories and not feeling so alone. I’m doing the Yorkshire 3 Peaks next month to help raise awareness of this awful disease, and for the carers who have looked after Mum as well. 

The carers looking after Mum are one-of-a-kind people. My mum’s best friends for the past year, they have taken care of my mum when I was unable to due to covid restrictions.

Care staff don’t get the credit they deserve. Our care system deserves so much money thrown at it. 

Those carers have kept my mum going. She has changed so much, but I still see glimpses of my beautiful mum and I believe that’s down to the carers who have kept her spirits up while COVID and this illness have tried to take her spirit away. 

I miss my mum more than anything in this world. I would do anything to try make a difference so that one day, hopefully other families will not have to go through this heartache.

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Phoebe has clearly described Anita's rapidly deteriorating condition and the pain and anguish the three of us have endured. Phoebe has been inspirational to me and has shown a degree of strength greater than mine. Following each visit I usually end up crying and only after two years am I coming to terms with Anita's suffering. I cannot commend Phoebe enough for her love, and support to both her Mum and me and her remarkable durability. God love them both.

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I’m so sorry that you are experiencing the tragic decline of your mum., Phoebe. My husband, aged 63, is ’ living’ with Alzheimer’s and I had to fight, initially, to get a diagnosis. He is declining rapidly and now bears little resemblance to the man I married 40 years ago. Despite the daily emotional challenges caused by this terrible disease, we still seize opportunities to laugh and reminisce. Please take card of yourself, too!

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Hi phoebe I know your mum from working in the chemist in featherstone she is a lovely lady I really feel for you I am going through the same with my brother in law he was diagnosed two years ago with rapid dementia he’s in care doesn’t know us and can’t do anything for himself now it’s so sad and a horrible condition I knew your mum was in care your aunt pat tokd me, good luck with your run and sending you lots of love 💕 and hugs cos boy do we need them stay strong lovey xxx

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I’m so sorry to read your story - how hard it must have been to be away from your Mum during Covid with no clear diagnosis. My husband is 63, with Alzheimer’s, and this year has also been hard as he’s had to shield due to other medical conditions. I’ve seen his Alzheimer’s get steadily worse during this time but at least we’ve been together. Your Mum will be enjoying the happy times and feelings from your visits to her.

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You could be telling my story. My mum has been in a home since April 2020. I get half an hour a week now with her but most of the time I was waving through a window. My mum comes alive with music and that's when you see a bit of the old mum. She can't string a sentence together only when she sings. Good luck with the 3 Peaks. Thanks for sharing your story.

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My dad passed away from Alzheimers about 4 years ago now. Hate to think how things would have been trhough Covid. He was 67 when diagnosed and a fit healthy lovely man. Who would have ever thought he would end up with dementia when he had always looked after himself. After a couple of year with the disease he developed challenging behaviour and kept going awol we (me and mum) had no choice but to let him go and he entered the care system. That was heart breaking. He was then sectioned under the mental health act 3 times and ended up in hospital in a special dementia unit for 18 months as no care home could manage him. Eventually he was placed in a nice home where where he was cared for and we (me and mum) could visit him, enjoy some activities such as music with himl, before he sadley passed away. It is awful in the care homes to see such an age range of people with this awful disease. It was a shock for me when we first started to look around for a place for dad. I wish you all the best on your journey with your mum and hope your walk goes well :)

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Truly inspiring Phoebe to put your thoughts and emotions down. I know how close you and your mum were, my prayers that you get to make many more memories !

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Anita was the most amazing and caring woman I had met! She will always be an inspiration ❤️

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I totally agree with you that there is not enough support for people with this awful disease. Neither is there enough understanding of the disease and what might have caused it. In my husbands case he had a brain scan a couple of years ago and was told he had had a couple of stokes. The consultant was unable to say when they occurred and how much damaged had been done. My husband has since been told he has Alzheimer’s with advanced dementia and also Parkinson’s disease. He is now in a nursing home, with people much older than him. Also, because of the pandemic he had spent months in hospital on his own and then had to transfer to the nursing home on his own. There needs to be a real push to spend as much money on research and cures for these awful diseases as money put into the pandemic.

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