My name is Gemma and I am a 30 year old nurse. My passion to care came from a special lady, called my Mam. I never really got to know my Mam as she was taken away from me when I was 22 but I began to lose her when I was only about 11 when she was diagnosed with Alzheimer’s disease. This was in the 90’s when there was even less awareness than there is nowadays.
The first signs
One Christmas my Mam was writing Christmas cards and instead of writing ‘to’ and the name of the recipient, she was putting our family name and then ‘from’ the intended recipient. She could not see her mistake. This is what led to visiting the GP and her diagnosis. However looking back there were many tell-tale signs. Being only young I never picked up on them then as I thought it was my Mam and the generation gap. I thought she just didn’t get things as she was older; she was 42 when she had me.
One day she had been doing the housework and she sat on the sofa next to me as I was watching kids TV and she turned to me, her eyes full of tears and said, ‘Gemma, I think I am going senile’. I told her to stop being silly as that was what older people got. If I had known then what was ahead of us, I would have given her the biggest cuddle and told her how much I loved her and we would get through this. I would have asked her all the questions about her life, asked her to share all her stories that are now lost forever.
Living with someone who has dementia is hard but at a time when the one person you would turn to help you through tough times is the one person you cannot, it gets even tougher. There was only my Mam, Dad and myself that lived at home as my brothers and sisters had their own homes. My Dad was great with my Mam but he was her carer and all of a sudden I had to grow up. I had to become a carer too and my Dad had to take on both parental roles.
I battled through school which was hard as people didn’t understand and peers used to taunt me saying, ‘Your Mam’s mad,’ and trying to start fights with me. I felt so alone. I was losing my Mam and I felt like I had no one to turn to. I didn’t want to bother anyone as they all had their own lives and tried to just keep battling through. I just wanted a normal life. I was already different from other kids as I had older parents. How was I going to fit in now?
The need for support
There was one teacher at school that helped by bringing a speaker in to talk about Alzheimer’s and their experiences. This helped a little but I still felt lonely. When someone has dementia they are the sufferer, but the whole family sufferers in different ways and goes through many emotions. Often we all suffer in silence as we all are just trying to battle thorough it and we don’t want to be a burden to anyone else. I didn’t want to add to my Dad’s stress levels as he had more than enough to cope with.
So who do you turn to? We had a really good social worker who helped me talk through how I felt. This was going the extra mile. When my Mam’s memory was failing and she was misplacing items and you couldn’t ask her where they were, it was frustrating for us all. It was hard not to get frustrated with her as it wasn’t her fault but try telling a teenager that!
I’d get angry with the world as it didn’t understand what we were going through. Why did it have to happen to my Mam? She wasn’t old enough to have dementia. I needed her, it’s not fair! I needed her to tell me it was going to be OK, to tell the bullies to go away, I needed her to help me grow into a woman, I needed her there when I wanted to talk about clothes, make up boys and school discos. She wasn’t there…..but I knew she would be, if she could.
If I had any new friends or when I started to have boyfriends I had to find the courage to tell them the story of my Mam before they met her so they would understand and I would hope that it wouldn’t scare them off. Looking back it was their problem if it did, but as a teenager all I wanted to do was desperately fit in and be normal. They really accepted her and that was such a relief. Maybe it was me that really couldn’t accept it?
There were times when I was really low and didn’t think I could keep going on but I found strength from within and with the support of my friends and family I kept battling on. When my Mam was diagnosed we didn’t know what to expect at all and we kept going through life blind sighted to what the future held for my Mam and us as a family. The experience has changed me and made me a stronger person.
Robbed of so much
I wish so much in the world my Mam could be there when I get married and have children but she cannot be. I know that Alzheimer’s took this away from her and us. It robbed her of her memories and robbed us all of making more. If anything good can come from such a loss it would be that I can help people who are going through similar experiences to cope and understand. Let people know that there are people that understand and that they don’t have to be alone. To help people understand the process and raise awareness among the communities so they are more dementia friendly instead of people thinking they are ‘batty’. Their memories have failed; do not let us fail them too.
After my Mam passed on I did a speech at her funeral as that was the last thing I could do for her. Where I found the strength I do not know. I had a tough time with my job and they were not very understanding at all. About a year later something just gave, people would talk to me and I would start crying for no reason and I kept going into the toilets at work and sobbing. A colleague came in as realised was something up and I just broke down. I had bottled everything up for too long and had tried to be too strong for too long and I just broke. It took me six months off work to sort myself out but I needed it. Depression comes with loss and its hard to shake the stigma of mental health in whatever form. When I accepted myself that it was OK to feel these emotions after loss, I started to be able to get on with my life. I also had a very good friend at work who helped me a lot. That's when fundraising helped me cope, that the loss I had would count for something. I couldn't bring my mam back but I could help others with my own experience and raise funds to help people have respite and outings.
I just wish I had cuddled my Mam more, I would give anything for that.
- Gemma Little lives in Amble, Northumberland. Her mum was in her early 50s when she was diagnosed with young onset Alzheimer's and died in 2006 aged 64. Gemma fundraises for local dementia charities and set up a Facebook page, Save the Memories in memory of her Mam and others with dementia. Gemma has also written tips for children with a parent who has young onset dementia. You can read her advice here.