I first started to notice changes in Mum’s behaviour when I moved back home with her to save money. She was forgetting things at work and kept being let go from jobs. When I asked her why, she said she couldn’t keep up. She also forgot my birthday, which was really unlike her.
I knew something wasn’t right so we went to the GP who referred us to a memory clinic. The consultant diagnosed Mum with cognitive impairment.
Mum’s memory started to decline rapidly from that point. She had always been a brilliant driver, but she started to drive through red lights and would forget her way home. We returned to the memory clinic, and she was eventually diagnosed with Alzheimer’s disease at the age of 59.
Becoming a carer
When Mum was diagnosed, my whole world stopped. I didn’t know whether I was coming or going.
I gave up my job working in a care home to become a full-time carer for Mum. I loved my job and the freedom that came with it, and had been living on my own for four years before moving back in with her.
My whole life revolved around my caring duties – I felt like I’d lost myself.
I’m now living off Carer’s Allowance, back in the family home that I grew up in, and I know I won’t be able to move out. I’ve lost a lot of independence.
Rachel’s mum, Brenda
Caring for a loved one is very different from working in a caring profession. I’m much more emotionally invested in Mum’s care.
It’s just the two of us at home, so it’s a huge responsibility for me. I have to look after the house, manage the finances and take Mum to all her appointments because she can’t drive anymore. It can be overwhelming.
Life as a carer in my 20s
This isn’t what I thought my life would look like in my late 20s. It’s hard to find time to see friends or to do anything for myself. My friends have been supportive, but it is difficult for them to really understand what I am going through.
As Mum’s main carer, I get to connect with her over little things like letting her dry my hair after I’ve washed it. But I’m also there for the hard times, when she is crying because she doesn’t understand what’s going on. I deal with it all.
The hardest thing for me is grieving for someone who is still here. I’m seeing Mum disappear in front of my eyes.
How our Admiral Nurse helps
When Mum was diagnosed, I received a call from the local authority who let me know that there was a dementia specialist Admiral Nurse in my area.
The nurse, also called Rachel, came to visit us at home two months after Mum was diagnosed. We clicked straight away, and I immediately felt a huge sense of relief. It was amazing to talk to someone who understood what I was going through.
Rachel has really got to know us as a family, so I don’t have to explain things too much. She gives me practical hints and tips and we work around obstacles together.
It feels like a weight off my shoulders knowing that I get to see her every month.
To this day, Mum doesn’t accept the diagnosis and won’t use the word dementia. She doesn’t think there is anything wrong with her.
However, Rachel and I have recently started to involve her in our sessions. Mum recognises Rachel and feels very confident and comfortable around her which is really nice to see.
We’re at the point now where I know what I’m doing and we’re in a good routine, but it was challenging getting to this point.
Prioritising my wellbeing
Rachel reassures me that I’m doing a good job, and that what I’m doing is enough.
She has also helped me to prioritise my own wellbeing. I told her that I wanted to start going to the gym and she went out of her way to secure some funding for a year’s gym membership.
Going to the gym has become my outlet – it’s nice to have that time to myself. This has helped enormously with both my physical and mental health.
I don’t feel like I’m a carer when I’m at the gym – I’m just me.
Rachel is my inspiration
Rachel has helped me to think about my own life outside of caring for Mum. She has given me the courage to apply for my nursing degree and I am starting university in September.
I’m nervous about juggling studying with caring but Rachel has been encouraging and supportive. She has made me see that it is possible and reminds me of how proud my Mum will be when I graduate.
I would love to follow in Rachel’s footsteps and be an Admiral Nurse one day. She is my inspiration.
Young onset dementia
We’ve created a section of content about young onset dementia (dementia symptoms under 65) to bring together information and resources that have been created specifically for younger people, that cover the key issues that you may face
Caring for a person with dementia can be physically and mentally demanding, so it’s vital that you also look after yourself. We share how you can stay well, maintain healthy relationships, and get the support you need