Dementia. It’s a word that you either never really give much thought about, or, you are far too familiar with. If it’s the latter, you have two choices. You can run away from it, give it the power it so greatly desires, or, you can run towards it, in full force. It can either make or break you as a family, the hard part is deciding which.
I can confidently say it didn’t break us. We refused to let that be an option. Although, when I say we, the driving force was my grandad. HE refused to let it break us. It’s hard, it’s really, really hard. There are countless times that you wonder if there will ever be a positive in the world that is dementia, if there will ever be another happy memory. I wanted to address it directly and fight back in black and white at a time that I feel otherwise broken.
We know you know. That’s something that, since day one, I always have and always will believe. As much as I respect them wholeheartedly, no doctor, psychologist or anyone in any profession will ever tell me that we, as a family, have been forgotten. 50 years of devoted, one of a kind, marriage. 45 years of being an incomparable dad. 15 years of being not only a wonderful father in law, but a best friend. 10 years of being an unbelievably special grandad, one that words fail to describe, as well as a true gentleman in general, that doesn’t just go away because dementia appears. The years of being all those things continue, and they did.
“It will always be the five of us” is a phrase that I tell myself and my family frequently, and I always will. That’s why I have always and will always refuse to believe that the bond we have and the love we share will just go away. I think that’s why we stayed so strong, all five of us, together. It showed us a strength that we didn’t know we had. Whether it was the sparkle he always had in his eye, the way he would look at me and touch my hair (he was the only one I would ever let do my hair when I was little and he would spend hours until it looked perfect) or the way that he might squeeze our hand, or say a certain word that just made sense in a world that was otherwise so confusing. These are just a few of the little things he would do to let us know that he was still there, it hadn’t completely taken over, not that we ever thought that for a second.
We would do things too, to let him know that things would never change and try to give him comfort. Some people may think we were just in denial but that wasn’t it. We knew full well that dementia had become a part of our families life, but the difference is, we refused to let it dictate and stop the things we had always done. Whether that’s making sure your husband is still shaved the way he has always took such pride in or taking a hot chocolate up every day when you go to see him, because it was always his favourite. Taking some of your birthday cake up and just having time to sit with your dad, because you refuse to not see him on your birthday. Or, wrapping up presents for your grandad and taking extra care when curling the ribbon, even though you will probably end up unwrapping them yourself. These are just some of the little things you do to let him know that you know. You know that he hasn’t really gone anywhere, you know that he still loves you like he always has and you know that, although he may not remember your name or exact relation, you are special to him, he is special to us and you love him and that is something that will never change, certainly not because dementia says so.
There are times when you are angry, so angry and feel true hate for the disease. Of course there are going to be those times, especially when it happens to someone that is your world. You have to watch each step go by and there is nothing you can do to stop it. The important thing is how you deal with the anger. You can let it overtake and cloud over the time you spend with your loved one or you can try and be as positive as you can about the situation. We did this because my grandad was always fighting and always being positive, so why the hell shouldn’t we? He found the strength to slow down a condition that usually overtakes very quickly, found the strength to fight back something that was trying to make it impossible to do so and found the strength to somehow, still stay true to his family and stay true to the gentleman he always was, even though the odds were against him. That’s who he was and always will be, a man who’s strength never ceased to amaze others, a man who always made people smile and feel that they could tell their life story to and a man who is an anomaly in a condition that thinks it’s got it all figured out.
Dementia allowed me to have a certain bond with my grandad that I otherwise may not have experienced, that’s what I try and think when the anger tries to take over. Not that it needed it, but at about ten years old when I truly started to figure out what dementia meant and what it was trying to do, there was no option for me other than to strengthen our bond. I became his protector from a very young age, we all did. What was important for me was that he never looked at us and thought that we saw dementia when we looked back at him. That wasn’t grandad.
It’s like the roles almost reverse. You do things that he did for you when you were little. You do things that people may not otherwise do for their husband, dad or grandad. At this point, it may be easy to be scared and run away but, like I said, that was never an option, never a thought that crossed any of our minds. It will always be the five of us.
I knew my grandad longer with dementia than without, but when I think of him, I never think of him as someone with dementia. I think of him as my strength, my courage and my sunshine. In everything I do I think ‘What would grandad say?’ and I strive to make him proud. Always have, always will. I feel so lucky to have the memories that I do with him and us as a family. I will cherish them always and I know he will always be by my side, telling me that “I can do it”. Although, I will never really understand what I did to be so lucky as to be able to call him my grandad.