There’s one undeniable truth that cannot be escaped from, no matter what you’re going through. Life carries on. The world keeps spinning, normal life ‘stuff’ happens, whether you have the capacity to deal with it or not. Sometimes it all happens at once, and you can think you have the worst luck, but all you can do is find ways to cope.
For me and my family, we feel we’re dealing with a lot right now. This isn’t a sad post, or it’s not meant to be, because for the last few days I really feel like I’ve been coping and I like that. Despite the rubbish stuff.
Each day I grieve for people that are still alive. That’s what happens when faced with diseases like dementia, you lose a little bit of them each day and you grieve that. You have to grieve that, whenever it comes up, so that you can cope. I’m grieving both my Grandma and Bella, both victims of this terrible disease.
It’s incredible hard saying goodbye to someone you’ve known your entire life, who taught you that you can and will get through anything life throws your way. And to Bella, who has become an anxious, distressed and sometimes angry dog. She’s never been that way, a little more anxious than most, but manageable and I worked tirelessly to make sure she never had anything to worry about.
But sometimes you cant stop the little sad thoughts that pop into your head. When I see my Grandma, and she’s lucid, she’s happy to see me. She knows she loves me, but I’m not sure she knows exactly who I am to her. I wonder, when was the last time she saw me and knew I was her Granddaughter? And I worry that every time I leave that I won’t know if that’s my last goodbye. Truth be told I’m finding it incredibly difficult and it’s a real internal fight to go and see her. Which I know sounds incredibly selfish, but when I saw her last she didn’t even acknowledge me, she looked at me like an intruder and not someone she loves. But I stayed, her carers left and I continued to stay. I eventually went to leave, quite a while later, and the living room door woke her. I immediately heard ‘Oh hello you!’ And I spun around, pretending I’d just arrived and enjoyed a few minutes of lucidity with my Grandma, until she drifted off again. I know I will continue the internal battle, because those few minutes of being someone she loves are worth taking the chance.
I’m having a little similar with Bella too, who’s now quite deaf. I have to use sharp sounds and voices to ensure she hears me. In the mornings, if she hasn’t already woken, I have to go and gently wake her up until she makes eye contact and is suddenly ‘in the room’ with me. Then I have to either use a sharper voice, which I dislike, or rely on hand signals to get her to understand what I’m asking. I think that’s why training is always done with hand signals and commands, so you still have something to rely on if they lose their hearing. But Bella doesn’t understand a lot of commands anymore, not because she’s deaf, but because she’s forgotten. And then a sudden thought pops into my head: ‘when was the last time Bella heard my voice?’ Not the drill sergeant I have to be so she can hear me, but her mum who used to sing to her to calm her down during the thunderstorms she can no longer hear.
So I’m having more regular therapy, I’m processing my grief both in private and in front of others. I admit my shitty thoughts and feelings because I know I’m not alone with them, and sometimes it takes another to speak up for others to feel safe with their thoughts. So I do that, because it helps. And when a large portion of your network are struggling, the best thing each of you can do is look after yourself and find the ways that help you cope. And while I am regularly feeling like I’m at capacity I also know I can and will get through this, by facing and processing things when they come up. By showing up for those few minutes with my Grandma, as someone she loves, and by showing up for Bella every day. By working with her dementia and needs, by doing what I can to keep her calm and doing my best, including not showing her just how frustrated and tired I am when I have to manage her crying and tantrums 24/7. It’s what I signed up for. It’s what you do for love and family.
Truth be told, I’ve been taking a concoction of supplements and regularly switching my stimulation programmes and I am feeling ok. I’m not good, I’m quite far from good. But I don’t want to rip my head off most of the time and I feel like I have a bit more useable energy so I am able to do a little more. I still have days I can’t do anything and others where I over do it. But I’m trying to stay focused on pacing, not just to manage my energy, crashes and pain but also my mental and emotional health. I think this is starting to contribute to me being able to cope a little better at the moment.
I also had to have my daith taken out for my scans last week. It was put back in today but I left with a hole in my nose too. Because sometimes self-care is making split second decisions, a reckless investment, because you just kinda fancy it. Waste of money? Likely. Did it make me smile? Absolutely. Sometimes it’s spending extra on supplements and dog groomers, other times it’s pointless shit like nose rings. There’s no rule book to self-care. So now I’m off home to disappoint my family, because at 30 you only need your own approval.