It’s taken me a while to post this and I’m not really sure why. I think I’m detached. Feeling guilty, perhaps? Or maybe just sad. I don’t know. Maybe I’m scared I’ll be judged for being a heartless granddaughter in the face of dementia?
“Things were all good yesterday, then the devil took your memory, and if you fell to your death today, I hope that heaven is your resting place … “
I went to a funeral today. It was my Nana’s funeral and it was truly awful. I’ll be honest, I felt like a total fraud the entire time I was there. I hadn’t seen my Nana for about three years before she died, after all. Why? Because she had dementia and it was really, truly awful.
I’d handled the news of her having dementia rather well. We weren’t particularly close; she was the mother of my step-dad, but she was still my Nana. She had a lot of love for me and I had a lot of love for her. My sister was the favourite, but I was the favourite of our other grandparents, on my mother’s side. I probably shouldn’t say that, but it’s true. It was obvious growing up. Everyone knew it. I never stayed at Nana’s house. My younger sister didn’t spend half as much time as I did at our Nanny’s house. That was just the way it went. Slightly dysfunctional perhaps, but whatever. We accepted it. We preferred it that way. It worked. Does a ‘normal’ family still exist these days anyway?
I was one of the first people my Nana forgot. I’d spent almost eight years galavanting around the world, so I don’t blame her for forgetting me. I’d have forgotten me too. The penultimate time we saw each other, she screamed at me because she thought I was mugging her. She couldn’t remember who I was. She’d walked past me at work and I ran out to say hello. As soon as I put my hand on her arm she screamed. Loud. Long. High-pitched. I’ll never get that sound out of my head, nor will I forget the terrified look in her eyes. She was my Nana … she wasn’t meant to have that reaction to me.
I saw her once more after that, in her first “home”. I think they call it “assisted living”. She seemed to be doing pretty well. Back in those days, her dementia was funny. She would do funny things and although there were serious undertones to it all, you just couldn’t help but laugh at/with her. She was such a character, right to the very end of her days, and she was clearly a firm favourite of the carers in her assisted living home, judging by how many of them turned up to pay their final respects.
She still didn’t remember me, though. The few times I did visit her in the home were pretty bad. It took some serious prompting and even then I’m not sure she even remembered who I actually was. I think she just gave up and said she didn’t when we all knew she didn’t. Once again, my heart sank. Just like that day she thought I was mugging her in the middle of the high street. It’s heartbreaking having to remind someone who you are when you’ve been their granddaughter for the last twenty-some years.
After that, I didn’t see her again. I chose not to go up and see her in the hospital during the last days of her life. It was two hours away. I couldn’t … I didn’t think I would cope well, especially with the journey on top. I can deal with a lot of things in life but dementia is not one of them. And in my head, it made more sense not to see her. I’m not an intimidating person but I certainly am colourful. I always have brightly coloured hair, piercings, I’m on my way to being pretty tatted-up … She wasn’t comfortable with me and the way I looked, and I wasn’t comfortable with that: making her feel uncomfortable. What was the point in upsetting us both?
I didn’t mean to leave it as long as I did. I didn’t mean to not get the chance to see her before she died, but it was really hard. Technically, I said goodbye to my grandmother three or four years ago, when she screamed at me because she thought I was mugging her. Everyone else was rushing around for her, and every time I brought up the idea of going to see her there would always be a reason why it didn’t happen. Work, no space in the car, she’s not very well, this week isn’t great, one thing or another. It would have been weird if I’d gone to see her by myself, especially if she hadn’t recognised me again. And now I feel like a bad granddaughter. I didn’t get the chance to see her, the grandmother who didn’t remember who I was. I couldn’t bring myself to go and see her.
My sister was right by her side until the very end. It has been truly heartbreaking to see my baby sibling go through that. Their bond had been strong, and watching her heartbreak was what made me tear up today at the funeral. I’ve barely cried at all. I didn’t when she died, and I didn’t today at the funeral either. Not really. I’ve never been very good with death. If I’m being honest, I just find the entire process mostly uncomfortable. I never know what to say, even when it’s my own relative or friend that has passed, and I always end up saying the wrong thing. Or I make people laugh. I’m known for that among my people; I turn every shitty situation into a really funny one. I think that’s half the reason I get invited to the events I do.
I didn’t cry until I saw my sister fall apart during the first hymn. I watched my aunt fall apart in front of us, mourning for the mother she would never see again. I watched my papa’s tears silently roll down his cheeks. I felt my mother’s hand clamped down tightly around mine, and I could feel her shaking as she cried too. She hasn’t been married to my dad for close to 15 years, yet she still cried. It was sad, of course it was, but I couldn’t find the tears to cry for my Nana. It was almost as if I were totally detached. Not there. My sadness was for the people around me, not for the grandmother in the coffin in front of me. I couldn’t work it out. I don’t know why I felt that way. But it was THEIR tears that made me cry. It was their sadness I felt, not my own. The tears that prickled my eyes were for them.
It broke my heart to see my loved ones cry, but I knew it wasn’t just grief we all felt. It was relief. The ordeal was finally over. The tantrums, lashing out, forgetting who we were, forgetting to eat, circling words on signs on the walls because she thought they were crosswords, getting into the wrong bed with residents she’d never met …
It was all over.
I’ve experienced death a few times in my life, but never like this. I felt sadness, but not loss. I’m actually glad it is finally over. Another shocking statement perhaps, but the last few days, weeks, months, years of dementia is awful. Not just for the person who is suffering from the disease, but also for the family falling apart around them. I’ve never seen my papa look so tired or old. My aunt seems to have aged a hundred years too. The sadness in my sister’s eyes … well, that’s something I’m never going to forget. Because that’s who I’m really sad for: my beautiful baby sister. A girl who went back to her grandmother day after day after day, even when she couldn’t remember, even when she didn’t want to know, and that takes some fucking balls. I didn’t have those balls.
And then there’s my guilt. Guilt for a loss I didn’t/don’t feel, for a Grandmother who didn’t know me, for not forcing myself to go and see her one last time …
I love you, Nana. I love you and I’m sorry I didn’t come to see you. I didn’t want to scare you. I didn’t want to scare myself. But I hope you’re happy with Grandad now, where you always wanted to be, and I hope my family never needs to go through dementia again.
I don’t think we’ll cope.