I'm an only child to two parents with Alzheimer's, both of whom have lost mental capacity. I also have a 5-year-old DD with multiple disabilities.
I manage all their finances, medications, life admin and appointments, clean their enormous house and do their food shopping. My DH, on top of his full-time, full-on job, cooks for them 3 times a week. They refuse all external help except a meal service I’ve arranged for them on the days we can’t provide hot food and even then, Mum throws hers in the bin. The authorities don’t push it and seem satisfied that we can manage everything.
My dad can’t hold information in his brain for longer than 10 seconds, phones me every half hour to ask the same questions on repeat when I’m not with him, and frequently phones the police to report relatives missing who have been dead for 50+ years. He has never acquired any domestic skills and cannot learn them now that Mum has lost hers - he can’t even work the microwave. He’s convinced that his wife his mum, frequently hallucinates and doesn’t recognise his own home. He once had a high-flying career and is acutley aware of his cognitive decline. He’s so used to being the one everyone depends on that he constantly invents ‘problems’ he needs to solve - before we stopped him driving he was spending a fortune on petrol driving across the UK to visit long-deceased relatives who he was convinced needed his help. He can’t get it into his head that he no longer has a car and keeps reporting it stolen! Caring for him is labour intensive but at least he’s grateful for everything we do to keep him ‘independent’ in his own home. He begs me daily to not give up on him - his worst nightmare is ending up in care and losing his home of 52 years and everything he’s ever worked for. When I can no longer fulfill his wishes and when I eventually lose him I will be devastated.
I’ve long since mourned for my mum - it’s like she’s had a personality transplant she’s so removed from her former self. The only part of her personality that remains is her stubborn streak. She hates being around anyone except my dad and when I visit she’ll either hide away in her bathroom or try and shoo me out of the front door. She has no idea who I am so she sees me as an intruder and an interference. She’ll actively fight me if she sees me taking her dirty laundry away to be washed or trying to change her bedding. She’s recently stopped washing and attacks me when I try to help. Sometimes she’ll look at me with pure hatred in her eyes. She survives on cake and has become a skeleton. She’s lost the capacity to comprehend language or speak except for four words that she utters on repeat, out of context. Her behaviour is heartbreaking and terrifies my DD.
They’re both remarkably physically fit for their ages (79 and 75). Last year, my mum escaped from the hospital ward and wasn’t found for 6 hours - by that point she’d walked 5 miles across the city in her slippers with no coat in subzero nighttime temperatures. She was entirely physically unscathed and has no concept of the impact this had on the family.
She was the best mum I could ask for when I was a child, but all the light she brought into my life has been overshadowed by the hell she causes on a daily basis. Her mum also had dementia and lived an utterly miserable existence in a home for the last 11 years of her life. Mum was extremely vocal at the time that if she ever went the same way to put a pillow over her head because she didn’t want to be a burden on anyone and there were worse things than death. Clearly, that’s out of the question, but I find myself longing for her to pass peacefully in her sleep as soon as possible, so save her this dire indignity.
From reading this thread, I’m under no illusion that we’re anywhere near the end. No doubt things will get much worse, I just never envisaged we’d be in this situation so soon, when my first priority must be my additional-needs 5-year-old. I’ll keep trying for as long as I can, however long that may be. I feel as though I’m spread so thinly yet every time I feel I’ve reached my limit I seem to find new reserves of perseverance.
I’m not entirely sure what I hope to gain from posting, I just needed to vent. I’m so sorry to hear that others are going through similarly soul-destroying situations.