In the years of looking after mum, I decided not to blog anything about it. I just thought it was something I could keep to myself. I didn’t want to come across complaining or moaning. It was difficult as you can imagine looking after your own relative who had an awful disease. Dementia is a terrible thing and to see someone taken away from you is just awful.

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Mum was diagnosed with vascular dementia at the beginning of 2010. She and other had noticed that she was having memory problems and they had become more acute. She had seen a consultant before who said her memory was fine for someone of her age. But mum knew that something had changed.

I was still working and I knew I had to make a choice. Would mum have to go into a home or would I try and look after her myself. It was a decision I wrestled with for months it wasn’t an overnight choice. I knew that there would be uncertainties right from the start. I read that if you resign from work you are not entitled to any job seekers allowance or whatever it was called back then.

I wasn’t too well either. I knew that on and off my depression had really taken a hold. I needed to rest and ultimately make sure that I was well enough to take on a task of looking after someone who would need a lot of care.

After a lot of thought, I said that I would. I discussed it with mum and she said it is up to you what you want to do. She gave no pressure for me to do anything. She wanted me to make my own mind up. Bearing in mind at this point in life it was me that helped mum with her shopping and bills etc.

So in the middle of 2010, I stopped work and became a full-time carer for my mother. I registered with a carers organisation and through the consultant when on a course for those people who were carers of those who had recently been diagnosed with either Alzheimer’s or other forms of dementia. I seem to be an odd one out in the group of about thirty people.

Most of the people who attended the course each week on a Thursday afternoon were either husbands or wives who had the full-time job of looking after a loved one. There were no men looking after any of their parents.

I know I was going to be in a unique situation. I certainly found that out when after all of the years passed the day trips that the carers association used to plan were geared for middle-aged women. Nothing that I would ever be interested in.

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What the future was supposed to hold I just didn’t know. I was given no timescale or indication of what would happen when and how. With this disease, it doesn’t necessarily form a pattern and each case seems to take on its own course and journey.

I had to take each day as it came. I had to respond to whatever happened night or day. I gave up the idea of holidays and breaks. Seven days a week and two or three times each day. When others had time to relax on the weekends or bank holidays I had the same each day. I couldn’t make any plans that would take me away from mum.

When people often talk about people with dementia they say sometimes that the person becomes aggressive or lashes out at people. This being part of the disease. Mum was never like that some nights it would take me an hour to help her get just her nightie on as she could no longer understand the reason and process of changing your clothes for bed.

I didn’t want her in a home. I wanted to keep her in a place that she was familiar with. Knowing that she was in her own house was a positive way to reinforce that she was okay.

In the next blog about mum, I will talk about the last year of her life. Seems a little premature to do so when we haven’t had the funeral. Thank you to those people who have said such kind words to me over the past week. Allowing myself to grieve and thinking about mum has been helped by those who have reached out their love to me.

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the barefoot tree

Still grumpy

Gari Wellingham

UK-based musical theatre geek previously living with a brain tumour!

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