It's not just a quick fix

I found that the more I spoke to people who had no experience of being a carer, nor living with or being around someone with dementia, the most common thing I heard was 'you moan a lot but do nothing about it to make YOUR life easier' or...'put her in a care home, you need to have your life.' When you feel overwhelmed with stress, it's very hard to take that first step to seek help. You have so many emotions of grief, guilt, anger, etc., and sometimes just an understanding ear can help.

I found such reactions not only insensitive, but they brought to light just how misunderstood and swept under the carpet dementia really is. Almost the word dementia made people feel uncomfortable to say, and it was often followed by a crumpled-up face, swiftly wanting to change the subject. It appeared to be an illness with a severe lack of understanding from anyone on the outside, and just seen as 'a no hope situation, to wash your hands of.'

The people living with the disease were seen as done for, and should be disposed of, as 'they don't know anyway.' It struck a chord with me as I went on in my carer's journey with my Mum; her identity was forgotten, and she was looked at as an inconvenience. I noticed attempts at relationships break down, as partners would see Mum as 'a quick fix,' knowing little about what went into the day-to-day of caring for her, the guilt, and the strain it put on family life.

Yes, it is incredibly stressful and very tiring, especially when you're trying to maintain a career and hold down a relationship, and in some cases being a parent, your bucket can become full very quickly. Some family members would support where they could, but couldn't meet half the need of what I contributed to Mum's care. Some individuals had no patience for us airing our stresses, and we were always met with 'well...you've chosen to do it, you don't have to.' I was aware we didn't have to, but I felt the need to give back; after all, this is how I was raised, to look after one another, and most importantly, she wasn't just anyone, she was my Mum!.

Outside care was very hard and expensive to get hold of and maintain. There'd be long waiting lists and multiple assessments that you could be waiting weeks for, and even then, what was on offer was very minimal and made little difference. Yes, we got desperate for help at times, but we didn't just want any random person coming into Mum's home, to care for her. Often with NHS carers not showing up or being late, ticking off their never-ending list of clients, visits were very short.

She had the upper hand that I lived with her, as well as having help from a private carer 2 hours a week. Mum was never left unattended, whilst I had some respite.

At the start of her diagnosis, Mum expressed her fear of going into a care home. We've all heard the horror of what can happen in such places, but they are not all bad. You need to do your research, which again is a process and takes time to find the right fit.

When you feel overwhelmed with stress, it's very hard to take that first step to seek help

The guilt we would have felt for abandoning her in her time of need, the worry that would constantly be on our minds of how she was being treated, or if she was just being sedated endlessly, to keep her under control. Being in that unfamiliar surrounding, for the rest of her days just did not sit well, with my conscience. Nothing is just a quick fix.