In this ‘stories that matter’ series, we will introduce you to people who live or work in Rhondda Cynon Taf, Bridgend and Merthyr Tydfil to hear their story, and find out what matters to them when it comes to health, social care and wellbeing.

 

I grew up in a very tight knit, loving family in Merthyr. It was a big family then, but we have grown even more over the years.

Mum now has four granddaughters and nine grandchildren, and my four nieces all have children of their own!

I love children. I work as a digital therapist at a school in Cardiff, creating film, animation and photography with autistic children who are aged between five and eleven.

I absolutely love my job, and over the past thirty years working at the school, I have experienced a number of happy moments.

One of my proudest achievements was winning an award for our film club. The club enriches the learning of all students at the school by encouraging them to communicate and socially interact with each other. I have really enjoyed seeing how positive the film club has been for the children and parents, who are able to enjoy regular trips to the cinema as a family.

It was an exciting experience to collect our award in Leicester Square, and meet director, Amma Asante and actor, Luke Evans!

Despite having such a wonderful job and family, I have recently experienced sadness in my life.

It all started in 2019, with Mum starting to exhibit symptoms of being very down. She was on medication for her heart, and started to get frustrated when she could not leave the house and find her tablets.

At first, I thought she might be suffering with depression because of the various health problems she has. Mum lives on her own, but has arthritis, mobility issues and a heart condition, which causes severe nosebleeds when pollen levels are high.

Mum had also just had a fall and could not get in and out of the bath. After breaking her hip five years ago, she has had a limp, and recently has started to use a walking frame and a wheelchair. However, she is desperate to walk around by herself, even though it is much better for her to have support.

Then we noticed that her personality started to change.

It started with little outbursts, but then started to get worse. We took Mum to the GP to get the ball rolling, but Mum was reluctant to accept help. I just knew something was not right.

Mum was diagnosed with Alzheimer’s and Vascular dementia just before Christmas 2019. It was so hard to find out over the festive season but all that mattered to us was helping Mum feel better.

I spent time trying to understand what I needed to do; getting the right medication, and making sure she was always warm and dressed.

Then the pandemic started, and it was horrendous.

I am a very strong person and have worked hard all of my life. However, I didn’t know where to turn.

I had to take time off work to do various different assessments for Mum, which the Alzheimer’s Society helped me with.

Shopping became so difficult because of all the restrictions, and we had to do everything online. I felt like I was really alone, and I didn’t know how to get out of the hole. I was just taking each day at a time.

There was so much to think about, and luckily the Alzheimer’s Society were on hand again to help with paperwork such as Power of Attorney. If it wasn’t for them, I’m not sure what I would have done.

It was hard trying to deal with a new diagnosis during a pandemic. My priority was keeping Mum warm and safe. Unfortunately, my family weren’t able to visit as one of my nieces lives in Southampton, and the other works in a hospital.

Although we are starting to emerge out of the pandemic now, I am still finding caring for Mum very hard.

When working full time in a busy job, I find it difficult to find the right information that will help me. There’s lots to know, and I’m still so new to this, that everything feels so unfamiliar.

I used to take going for a simple walk for granted. Now, I need to improvise to make sure I can schedule any time I have for myself, with when carers arrive.

I often feel completely exhausted, both mentally and physically.

There’s so many jobs to do, from maintaining Mum’s house, to doing the shopping, I find it hard to have quality time with Mum.

It can be so challenging at times, which has made me feel low.

Mum’s condition means that she only can take in information for two minutes at a time, so she often feels confused and anxious, even though she knows her carers. Mum still needs to be reassured she’s in a safe place.

I would like to be there for Mum, but I also crave ‘me time’. I would love to go a day without worrying about her.

So what would I like to see changed and improved for unpaid carers?

For me, one of the most important things unpaid carers need is respite. However, to avoid me worrying while I’m away, I would need Mum to be looked after somebody familiar. Somebody who knows Mum and knows how to communicate with her. Trust is everything.

It’s normal for people with Alzheimer’s disease to feel confused. To help Mum understand things better, I have had to find new ways to communicate with her. I think training around communication for both professionals and carers is so important, and can make all the difference.

I would also like to see more information and guidance shared. When I first began caring for Mum, I wasn’t sure where to turn, but thanks to a few wonderful organisations, I have felt supported. I think all unpaid carers should know where to get help – both emotionally and financially – at any time.

I think it’s also important that there is a consistent presence in a person’s life when they are living with dementia or Alzheimer’s. We would really benefit from a co-ordinator who can ensure anyone who goes to see Mum has the most up-to-date information on her latest needs.

Because of the amount of time I spend with Mum, I have had to think about whether I can continue with my job full time. This will have a financial impact on me, and I would like to know where I can get financial support so I can continue to live independently, and help Mum.

This has been one of the most difficult times of my life, but I will continue to be there for Mum and hope sharing my story will help other unpaid carers to feel heard.

Yasmin’s experiences and feelings will feed into our Assessment of Local Wellbeing and Need. Read about this here. 

Images are stock.