Imagine you have Alzheimer’s disease and need 24/7 care. You and your family have been to hell and back but now you’ve found peace at a council-run care home that’s made you smile again. Then suddenly the council wants to sell your home.

That’s what Kirklees Council is planning to do with Janet’s home, Castle Grange at Newsome. Here her daughter SARA BLAGBROUGH imagines how her mum would tell her story – if only she still had a voice. 

My name is Janet, I’m 67 years old, a mother of two and have two granddaughters. I worked as a hairdresser and then at Kirklees College for 25 years. Huddersfield has always been my home.

Seven years ago I got diagnosed with Early Onset Alzheimer’s. They call it that when you have a diagnosis before the age of 65.

I was 60…still working, living on my own and enjoying seeing my friends and family. When I received the diagnosis I was terrified. What would this mean for me, would I be able to keep working, living on my own?

How would I be a big part of my children’s lives as I always had been? Would people understand or judge me? Would I end up in a care home?

All these fears were racing through my mind as my mind began failing me. I’ve always been physically fit, active, kept my mind busy – so why me? Why was this happening to me?

Gradually I needed more support. Things I had always done without thinking became hard for me. I was frustrated and angry that I couldn’t do ‘simple’ things.

I started to need help with showering and getting dressed. I was always a woman who prided herself on looking smart and now I couldn’t figure out how to put my clothes on in the right order. I felt so frustrated.

As the Alzheimer’s took hold I felt so scared and confused. I didn’t know who I could trust. I would shout and scream and lash out at those I love because I didn’t know what was happening to me.

I went out of the house but couldn’t work out how to get to where I wanted to go. Family frantically searched for me and when they found me I took it out on them. I know they were trying to help me but I was losing sight of my emotions.

We needed more support so people started coming into my home. I didn’t know who they were and the faces were always changing.

Sometimes they helped and other times they didn’t help me properly to eat or get undressed so I slept in my clothes and would miss my medication because they were in a rush.

My family would cry when they came to visit because they felt so helpless. They thought I was giving up because I didn’t get out of bed. My family knew something had to change but were scared what that would look like.

 

 

I moved to Castle Grange in May 2022. I could sense everyone around me was friendly. I liked it and settled in well.

The people understood me even though the Alzheimer’s had robbed me of my voice. They seemed to know if I was happy, sad or in discomfort.

It had felt like a long time since someone had understood me. I came off the anti-psychotic medication because those looking after me didn’t think I needed it anymore.

I felt safe because there were people around me all the time. I started smiling and laughing again. When my family visited, I could see they were happier too.

Now there is a risk that Castle Grange is going to change. That the people that are so familiar to me won’t be caring for me anymore. This scares me.

I’m scared because I no longer have the words to tell someone if things aren’t right. I’m scared I will silently have to endure something I don’t deserve.

What if the new carers shout at me because I don’t understand their instructions? Or even worse physically harm me because I haven’t understood what they want me to do?

What if they speak to me without respect because they know I can’t tell anyone. I need help with every aspect of my life.

Will I be given a drink when I’m thirsty? Will I be left hungry because I can’t feed myself? Will I be left in soiled clothing because the carers don’t have time? If I get frustrated will I be put back on medication that made me feel like a zombie?

What if they say my needs are too much and I have to move? Where will I go?

I’m scared about what this will do to my family. I’ve seen what Alzheimer’s has done to them. The tears, the worry, the sleepless nights. The way they have looked at me with such helplessness with the weight of the world on their shoulders. We all just need peace now.

I am finally content after this cruel disease has taken so much from me. Please let me live the rest of my life around people that care for me with respect and dignity.

I never thought this would be me. I never thought at the age of 67 I would need 24/7 care but here I am.

I pictured retiring, travelling, seeing friends, being a big part of my granddaughters’ lives but in reality I don’t even recognise them as my granddaughters.

Now all I have is feeling safe and secure and as comfortable as possible. Castle Grange gives that to me. Please do not take that away from me.

 

Three private operators interested in taking on Kirklees Council’s two dementia care homes