Personal stories
Read personal stories from people living with a diagnosis, their family members and friends - as well as our dementia specialist Admiral Nurses.
Penny’s story: "I live with dementia"
Penny’s Mum, Rosemary, lives with mixed dementia and is now in a care home. Penny shares how Dementia UK’s Admiral Nurse Helpline supported her.
Dementia has taken over my life for the last ten years. Mum used to call me constantly and I would always worry that something had happened to her. I went back and forth from her house to make sure everything was in place but inevitably something would always go off course when I wasn’t there. Becoming Mum’s carer as well as her daughter was a big adjustment.
It has been hard to spend time with my husband and children or to do anything for myself. We’ve always wanted to travel and see family in Australia, and I haven’t felt able to do that since Mum was diagnosed.
My family has been very supportive, and my husband has been my rock. He is a doctor and is very good at giving practical advice.
“I felt like I was constantly on call”
I wanted my mum to live at home for as long as possible and I tried to make that happen. As her dementia progressed, it was getting more difficult to keep her safe. On one occasion, Mum was found on the street in her nightie. I was lucky to be able to hire 24/7 carers to come to the house but I still felt like I was always on call. The carers would often ring me to ask questions or to tell me that something had gone wrong.
Eventually I accepted that it was time for Mum to go into a care home. Finding the right home was a really difficult process. The first two we tried just couldn’t meet Mum’s needs. As kind as they were, I felt the staff didn’t have the depth of knowledge to understand dementia.
“The dementia specialist Admiral Nurse on the Helpline took time to understand our circumstances and gave solutions, help and advice.”
Finding the right care home felt overwhelming so I called the Helpline and just cried. The Admiral Nurse took time to reassure me that Mum might be at the wrong home and that it wasn’t me being too picky. It was such a relief to speak to someone who had specialist knowledge about dementia and it gave me the motivation to keep searching for the right home.
The specialist nurse on the Helpline took time to understand our circumstances and gave solutions, help and advice. I didn’t have any other professional support available to me, and I couldn’t have coped without the Helpline.
“I still feel a huge sense of responsibility”
I’ve finally found the right care home which has a more person-centered approach. I visit Mum every week and I do her hair, paint her nails and put her lipstick on so I can leave her looking like my mum. I get glimpses of her when we sit down at the piano together and she critiques my playing.
I’ve had to sell Mum’s house and go through all her belongings. In those moments I felt like I had my mum back but that was soon contrasted with her confusion when I visited her. I’ve kept all her old journals, letters and photo albums as I can’t bring myself to part with them.
People ask me if I feel relieved now that Mum is in the right care home, but I don’t. I still feel a huge sense of responsibility and guilt.
“Living with dementia is a rollercoaster”
Living with dementia is a rollercoaster. Just when you have resolved one issue and things are going ok, you are faced with something else. I am constantly looking for new strategies and practical tips.
The living with dementia guide will be a great resource for families. I was often too consumed by the day-to-day of living with dementia that I was unable to think of solutions. I find practical tips so useful as I don’t want too much information at one time. Dementia is so unpredictable and having a guide full of tips will be great for families to tackle one issue at a time.
Penny’s top tip
When you are trying to find a care home, go with your gut. Look at as many as you can and don’t stop until you find the right one. I was worried that I was being too picky, but I knew what I wanted, and I wasn’t prepared to settle. I’ve now found a home that suits Mum perfectly and I’m so pleased I didn’t give up.
We live with dementia
If you love someone living with dementia, you’re living with it too.That’s the message behind our new campaign. It doesn’t just affect the person with the diagnosis – everyone around them is also affected. And with one in two of us impacted by dementia in our lifetime – whether by caring for someone with the condition, developing it ourselves, or both – it’s a message that’s as vital as ever.
How we can 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.