I've been pondering about whether to write this down, or whether to keep it buried deep in my head. I'm still pondering to be honest, but will see what happens as I type.
Guilt - it's a horrid, debilitating thing that makes you feel bad for having thoughts you don't think you should be having. I'm on a double edged sword with mine. It's what hits me hard and usually begins the run into that wall that I try to avoid but sometimes crash against, and it's usually when things are going ok, when there's a bit of a lull, a bit of "forgetting" what illness he has, when I start to feel comfortable.
Mine is like this...
Scenario One. "What if he dies from this illness? I'm 37, what will I do? I'd be a widow, a young one and without him". I've been with hubby for twenty years later this year. I've known him longer than I haven't, and the thought of him not being around can reduce me to tears - and he's still here, so why am I tearful? Never mind the fact it's him going through the illness, it's him this wretched beast is shutting down slowly, it's him that knows what he's probably going to miss, knows who he's going to possibly forget, and yet I'm selfish enough to worry about what will happen once he's gone.
Scenario Two. "What if he lives to be ancient? I've could have another forty or fifty years of this, with it declining, him getting worse, me being unable to cope. Him forgetting who we are, forgetting our names, not being able to walk the girls down the aisle, know who their children are etc. etc." I can't imagine him not being here, but the guilt of this illness turning him into a shell of himself terifies me also, how I'd manage for decades more, cope, finance things, deal with him not knowing the girls or I - that breaks my heart and can reduce me to tears also - and yet again, me being selfish and worrying about me - again.
Middley is the only one who has twigged that daddy might forget who they are. "He won't forget you mummy, you're too important" (eyes prickling now), and littley, bright as a button piped up "we'll just wear name tags like we do at school when we have a new teacher".
These are the things I hate about this illness, how it robs people. It's robbing my husband of his future, my children of their dadddy, childhood and future, and me of my husband.
It sits like a shadowy fog in the corner of the room and it just laps up around you when it sees fit. It curls around you and slips back into the darkness to let you feel like everything is going to be alright only to tug at you harder the next time it feels like it.
Dementia is like a still calm lake. One you can see your reflection in clearly. Then it throws in a pebble, and that's when the ripples reach out causing destruction and devastation in their pretty, calming escape to the edge of the pond. It effects everyone. No-one is free from it's reaches, the ill or the carer. That's why we all get up in the morning and just get on with what we have to do to make the water as calm and as ripple free for as long as possible, however exhausting.
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