Life might not be the party we'd hoped for, but while we here we may as well dance.
What makes your heart sing? For me it's walking and being outdoors, alone or with excellent company. A perfect day would be early rising, long walk in the countryside, lunch and a pint in the pub, home by tea time and a good movie on tv followed by an early night because I do like my sleep - a lot. That really is what floats my boat and walking with my brother on Saturday just for those two hours re-energised me more than anything has in a long time, then I got home and back to the shit show that is my 'life' at the moment. I went on a zoom chat for an hour and came off questioning whether part my plans for the future were possible, if I even had the energy for any of it.
Then Sunday I managed to get her in the car for an hour and my heart lifted, I had a little hope, but later she slipped back into the abyss and kept me awake almost all night. I ate a roast beef dinner at 5am yesterday morning, my body clock is so messed up, I remember thinking I'm gonna have to call someone, this can't go on, then I looked at the clock and it was just gone 7am, normal people were just getting up to start their day! I messaged my sister and asked her to sit with mom so I could go for some fresh air with Alfie, I popped him in the car and we drove to Essington and walked round the pools for just over an hour, it was bliss. I felt like me again briefly, I know my limits and standing there looking at the reflections in the water, I knew I was at mine. I don't function without sleep and I've been averaging around 3 hours most nights, it's not comfortable sleep either, my body is in bits.
I've always known that I would most likely need help at some point, I won't lie I hoped she would pass away before we got there or that she would no longer know who I or anyone else was when it came to that point. To be honest, we're not that far off this position, for years I've not done things or gone out because her mood and behaviour when I returned made it so uncomfortable and difficult, that it wasn't worth the trade off. I remember times driving back from work wondering what mood she was going to be in when I arrived, it felt like an emotionally abusive situation, please remember though that wasn't 'my mom' behaving this way, it was the dementia demon that's been taking over for the past decade. These days, she's vile to me most of the time so it won't make much difference if I do go out and try and get a little bit of my life back, oh and sleep, I'd love an uninterrupted night of sleep in a comfy bed!
I'm hoping that having people in the house might give her a change of scenery and some different company, it may reengage her with life because I can't be ra ra 100% attention on her when I'm exhausted, I can barely think straight.
I stopped my car and pulled over on the drive back from the pools realising it was now a reasonable time to call someone, I recalled a name which is unusual for me as my memory for names ain't great, I had stored her name in my phone thankfully but I couldn't remember what she actually did, I just remember a feeling she left me with, I recalled she helped me previously. I rang the number and said, 'are you the dementia lady', she laughed in a kind way and told me she wasn't but she asked me my name, listened to my tears, helped me explain the situation, then she told me this couldn't go on and that she was going to make some calls with my permission and get me some help. Amazing lady who does what she says she will - I love people like that, she then spent the next few hours making those calls because calling me back.
I don't know what that 'help' is going to be exactly, but moms dementia nurse is coming to see us on Thursday and will be talking to the consultant before she comes, the district nurses are going to do an incontinence assessment and the care people are going to come in each morning to help wash and dress mom. Respite will be looked at too, someone possibly coming to sit with mom so I can have a couple of nights sleep a week, we shall see. How mom will react, who knows, but I need to try because this can't go on this way, I'm exhausted, I need to sleep.
My wonderful sister told me to go have a bath when I got back and she stayed with mom but mom didn't want me to go, she's so afraid, her brain is completely broken, she can't help the way she's behaving, the anger that comes from her is from a place of fear not hate.
We had a relatively calm day and we've even had sleep, albeit downstairs on that god awful uncomfortable bed in this very hot living room, she's still asleep and she's only woke me a few times because she thought she needed the toilet, using the commode she only wee'd a little. She's not drinking enough, I make her cups of tea and she's been leaving them. I've slept but I'm not rested if that makes sense, I'm the kind of tired that will take more than sleep to cure, I need more walks in the fresh air, I need to spend time with my friends, I need to giggle and laugh, and ma'an do I need a hug!
It's almost a year since lockdown started, it's well over a year since I went out for a meal, that was January 2020! I'd just be happy to eat a fk it bucket in the garden with my pals whilst drinking something fizzy! Here's hoping ay that we all get to do the things we've missed really soon.
But for today, having had some sleep, we shall hope for a calm day, eat some delicious food and rest up. I'm grateful for the people contacting me for quotes with UW, because I honestly haven't the energy to 'tout' for business so to speak, my brain is as tired as my body. It won't be forever, it's just for now.
Nothing is permanent... don't stress yourself too much because no matter how bad the situation is... it will change. One thing I've also realised this week is never make permanent decisions based on temporary feelings. I'm very lucky to have amazing ladies in my life who listen to me process my thoughts, don't just in with 'solutions', only offer their opinion and advice if asked for it, they have helped me survive the last few years more than they'll ever know.
And just to make you smile, one of the best things I ate yesterday was lettuce and cucumber! See good food is delicious, it tasted fresh and was the perfect accompliment to the pizza I'd treated myself to from M&S ;) I'll never be a saint in the kitchen let's be honest.
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