When I think about myself when my husband was first diagnosed, I was completely lost. I never would have imagined that I would be where I am now. Now, I am speaking to rooms full of people at Dementia Congress about my caring experience. I am so glad to have finally found my voice. And to be a voice for all carers of people with dementia.

We are so easily forgotten as people. I remember having to get used to being referred to as “carer of”… no longer a wife. I felt like my identity was being stripped away from me. I felt I was never being listened to.  

I’m very proud of how far I’ve come since then. When I first joined tide, I was at the lowest point in my life. I was really struggling to cope with caring for my husband. Tide saved me. They were the first organisation to tell me that how I felt mattered. That alone was so powerful. They built my confidence back again.

It’s reassuring to see so many organisations taking an interest in a carer’s perspective. We have too often been ignored. But we deserve an equal seat at the table regarding dementia care. We know what it’s like to care for someone with dementia every day for years.

I am now involved with Liverpool and Manchester University speaking to their medical students about looking after someone with dementia from a carer’s perspective. It’s so wonderful to know that by sharing my experience, I can make a difference in how unpaid carers are treated. There were certain things I went through that I would never want any other carer to have to face.

The way I received news of my husband’s diagnosis still affects me to this day. There was no kindness there. I struggled to find information and support that I felt should have been there the moment I heard the word dementia. I sincerely hope that with everything I share, it makes it that little bit easier for the carers that come after me. I know that so many of the struggles I faced could have been avoided with better support, better communication, better advice and more co-production with carers.

This is silver lining to all my struggles. They lit a fire in me to push for change. No one deserves to be treated the way unpaid carers are treated. It is encouraging to see what differences I can make as a former carer. And you can too. Please, if you are an unpaid carer who is reading this, don’t give up. Believe that you deserve better. You can make change happen. And you don’t have to do it alone. At tide, we are all in this together. 

You never know what difference you might be able to make. One opportunity often leads to another. I was approached by Radio Northwich at a conference where I spoke about my caring journey. Now I am on the advisory group to help Northwich become a dementia friendly town! I’ve also been asked to help my local GP surgery ensure that it is a more dementia friendly space. They have now removed painted grids outside the entrance which my husband would perceive as holes. Carers know. We have valuable knowledge to share. 

I’m so glad that I will be able to make real changes to the place I live. It’s so important that we speak up about what we struggle with in daily life. I don’t want carers to feel they have to hide themselves away in their homes because it just feels too difficult sometimes. We deserve a society that is more understanding of dementia and more accessible to anyone affected by dementia. Sometimes the task of change can feel impossible. It’s easy to think to yourself “what difference could I possibly make?”. But I am the proof that anyone can do so.

I also volunteer my time local carer groups and dementia cafés to help other unpaid carers. A little friendly advice from someone who has gone through what you have gone through can make such a huge difference to someone’s life. Yes, we all have different stories but much of what we go through comes from the same place. Carers need to realise they aren’t on their own. Although it is painful that many of us don’t receive the formal support we need. It warms my heart to know that unpaid carers are there for each other.

Since attending tide groups and events, I have found life-long friends. It meant the world to me since I felt I lost so many of my friendships when I was caring for my husband. With other carers, they just get it. They are so wonderful to me. They can sense when I’m down or have had a bad day and they are just there for me. It means the world. As a carer, no one gets you like a carer gets you.

With tide I have found my voice and I have found my community.