‘I live with dementia’ – Joanna’s story

I think about Mum’s dementia every minute of every day, from when I wake up in the morning to when I go to bed at night. I am living with it too.

Joanna’s mum has vascular dementia and is now living in a care home. Joanna talks about the impact that her mum’s condition has had on the whole family over the years.

Changing my career

When Mum was diagnosed with dementia, I was working shift patterns as a police officer and I also had three young children. I was in a constant state of fight or flight – just a constant state of anxiety.

I decided to completely change my career because I needed a job with regular hours. If I was on a late shift and didn’t get home until four o’clock in the morning, I’d still have to get up to take Mum to a doctor’s appointment at nine o’clock. I couldn’t cope with the stress.

When you have a child, they have milestones in their development, but you have the reverse with dementia. There’s always another thing that Mum can’t do or can’t understand. That hits me hard.

Joanna

Joanna

It’s not just my mum who’s living with dementia – I am living with it too.
It causes stress on a day-to-day basis, plus the emotional trauma of seeing the person that I love deteriorate.

Impacting my family

Mum’s dementia has also impacted my children as they were very close to her growing up. My daughter who is 17, once found my mum on the floor after a fall, and that was really traumatic for her. My husband can see the impact my mum’s dementia has on me, which inevitably worries him, too.

I think about Mum’s dementia every minute of every day, from when I wake up in the morning to when I go to bed at night.

There were some quite desperate moments when Mum was really starting to deteriorate before she went into the care home. I honestly didn’t know what to do. I was so exhausted. I couldn’t get through a day without crying.

Calling the Dementia Helpline

I googled ‘dementia help’ and I found the Dementia UK website. I called the Admiral Nurse Dementia Helpline and was put in touch with a dementia specialist Admiral Nurse called Louise.

Speaking to Louise felt like speaking to this amazing, knowledgeable professional who understood me and what I was going through. It was such a relief.

Joanna and her daughter

Joanna and her daughter, Mia

She asked me how I was doing, and I realised that nobody had actually asked me, “How are you?” Louise taught me that it was okay to not be okay. I also needed to look after myself to be able to give Mum the care she needed.

Louise also gave me lots of practical advice that I wouldn’t have known otherwise. I was given advice on applying for care funding which helped me transition Mum into a care home.

Louise was my guardian angel and said that I could call the Helpline whenever I needed to. That felt like a safety blanket for me. Dementia has been a very rocky road for our whole family, and I know it’s not just my family going through this. That’s why I’m supporting Dementia UK’s ‘I live with dementia’ campaign, so more people are aware of the life-changing support and advice that Dementia UK offer.

Joanna is supporting our ‘I live with dementia’ campaign. Click here to find out more about the campaign and meet other families.

I live with dementia campaign

If you love someone living with dementia, you’re living with it too. Our Admiral Nurses share free, expert information that can help you and your family live better with dementia

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Campaign resources

We’ve created some downloadable resources so that you can show your support for the ‘I live with dementia’ campaign and families facing dementia

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How can we support you

Whether you have a question that needs an immediate answer or need emotional support when life feels overwhelming, these are the ways our dementia specialist Admiral Nurses can support you

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