I am carer for my grandma and granddad who both have dementia. My grandma has Alzheimer’s and my granddad has senile dementia. It’s hard caring for someone who can’t remember you from one day to the next. There are good days and bad days of course. Sometimes I’ll be remembered, other times I won’t. The thing with dementia is you never know. My granddad’s dementia is progressing rapidly, my grandma’s dementia is not too bad at the moment, it is progressing but not rapidly.
My granddad was mis-diagnosed at first, but then when he took a test at the GP surgery, it was revealed. I often think dementia is often mis-diagnosed, because forgetfulness is common in old age, at least that’s my experience anyway. My great-grandfather also had dementia, if I remember rightly, he died when I was 12. I saw him in the later stages of his dementia – he did not know who I was at all. All I remember is him telling me stories of the war and when we left him kissing his thumb and holding it up towards me. It’s horrible to think that I’m going to watch both my grandparents get to that stage, where they no longer know who I am.
I have a close relationship with my grandparents as they brought me up when my parents had to go back to work. I used to call my grandma ‘Mammy Grandma’ and my granddad ‘Daddy, Granddad’, because we have such a strong bond. I had an idyllic childhood, going on holidays, trips every weekend…it was perfect. But they won’t be able to remember that soon.
It really is difficult watching them worsen. Losing their independence and abilities, losing their personalities and losing their dignity sometimes. Dementia is not a nice disease. It robs you and the family of everything. Caring for my grandparents has been difficult, but I remember that they did it for my great granddad. It is hard when their personalities change so much. It frustrates me when they get angry, upsets me when they get upset, but on their good days when they are happy and cheerful, well there is no better feeling in the world, except for love – but I love them unconditionally anyway! I have to support them with everyday tasks, which is something I should not have to do, but I do it out of love. I am grateful for everyday I get to spend with them and grateful that they can still remember me, I take each day as it comes though, because it may be the last. I dread the day when they are in the later stages and can’t remember me or the memories I have with them. Music is important to them, so I hope that will help in the later stages.
The day they lose every ounce of who they are as a person, will be the hardest day. They won’t be the same people anymore. That’s why I like to keep the memories I have of them, in pictures, in video form and in messages from them when I was young. You really have to treasure all of the memories you have, because someone has to remember them. Even if they can’t remember who you are, you still know who they are, on the inside, even if they aren’t that person now.
Being only 20 and watching my grandparent’s go through this is difficult. I can imagine what it is like for other children. It is very confusing. I can remember asking about my great granddad when I was younger – ‘Why does grandpa not know who I am?’, ‘Why does he get angry when he can’t remember anything?’. Little children may not understand on the outside, but I bet they do on the inside. Although dementia does change you as a person, to people you are still their loved one no matter what. My granddad will always be that and my grandma will too. And I’m their granddaughter, as much as their carer.
People need to be educated about this disease so that it can be passed down to other generations. We need to lessen the stigma, because it isn’t fair. You are possibly losing a person to old age and to a disease too. In the case of my grandma, I’ve lost her to brain damage, to old age and now dementia too – she has changed so much since I was a little girl and it is challenging. I only get a smile out of her when I visit her in the care home and it brings me so much joy, I can’t even tell you how much it means to me. I want to keep both of my grandparents being able to remember me, at least until I graduate from university, because that will be one of the proudest moments of my life and I want them to remember it at least. They are the ones that have pushed me to do the best in life (which is good and bad) of course.
I know I’ve said caring is difficult a number of times, but it is true. I would hate to have dementia, in all honesty. It is a debilitating disease that robs you of who you are. I don’t think anyone would want that. I often think ‘Why them?’, they’ve paid their way in the world, contributed a lot…but the disease isn’t specific to anyone, it just chooses you. It worries me how many more people are being chosen every minute. The problem is only going to get worse.
My grandparents are really special to me and when they pass on…well I don’t even want to think about it. It will destroy me. It may seem selfish of me, but I’d rather it be sooner rather than later because having to watch them go through dementia is heartbreaking. I’m crying writing this because I’m so passionate and grandparents mean the world to me. A bond between grandparent’s and granddaughter is amazing and when they forget that…how can you not be upset?
Being a carer for someone with dementia is a struggle, it is challenging, heartbreaking…but it is also the best thing in the world, I get to spend more time with them, even if they aren’t the people I once knew. Everyone changes through life, but this disease robs you of your identity so you can’t remember anymore. I am blessed to be a carer for two of the most important and inspiring people in my life, so as much as this disease takes them away from me, it will never take who they are and what they mean to me and the memories I have. I’ll always remember those, as long as I can.