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.

Sign our petition to #CureTheCareSystem

Alzheimer’s Society is calling on the Government to cure the care system and provide quality social care that is free and easy to access, no matter where you live.

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