I actually picked up the phone to ring my mum yesterday and then realised I couldn't. She isn't dead but she isn't there either. Mum has dementia and it's slowly destroying everyone around her. I know it's the illness and everyone says to be patient and understanding but do you know what - she's manipulative, controlling and can be very hurtful when she lashes out verbally.
For a long time her dementia was 'the elephant in the room' and we all tried to pretend it wasn't happening. Then she fell and fractured her hip necessitating a stay at a rehab centre for dementia patients ( funny how short term memory loss becomes dementia over night) without Dad to cover up for her she didn't know if she took sugar in her tea, what her date of birth was.....although she had amazing strategies for covering up:
Social worker: what's your date of birth?
Mum: you're nosy aren't you?
Sw: were you born in the winter or the Summer
Mum: it's not something I think about
Not once did she say 'I don't know'
She was controlling everyone from her bed, dad went for 6 hours or so everyday but woe betide if he was a few minutes late! We respected the illness 'she can't help it' we tried to be understanding but boy could she push everyone's buttons! After nearly 2 months of daily visits, bathing her, taking her to the toilet, creaming her legs and feet whilst she complained loudly about everyone in here being a 'bit loopy' she had an almighty temper tantrum. Banging her fists on the bed and screaming that we were selfish and didn't care about her was a 'pushed button too far' and everything I'd bottled up came out. Not my finest hour but unavoidable. When I apologised to Dad his response was 'I'm only surprised you lasted as long as you did!'
She's now at home with my dad who is eighty in May as her chief carer. Yes, help is available but she fights every step of the way. Her first visit to a respite day centre for two hours last week resulted in the surreal experience of being in a room full of dementia patients all looking at me expectantly whilst dad cried and mum shouted at me for being cruel - thank god for antidepressants. The lady in charge kindly led us away, told us to leave as this was normal. On the way home I could talk to dad for the first time in months, paranoia means mum won't let him out of her sight as everyone is talking about her - again the world revolves around her. 'Its like leaving a child at nursery school isn't it?' Dad knows this isn't his wife and he knows that everything we are doing is to support him but it's hard.
His only 'escape' is to watch Barnsley FC playing once a fortnight, when myself or my brother sit with mum. Yesterday I turned up to do this and had the saddest 'non conversation' with Dad ever. He checks the calendar and buys all the birthday cards he needs for that month and I sign then for him. We did this as normal and he then gave me a card in a paper bag. I just raised an eyebrow and he nodded. The card said 'to my husband on our anniversary' - he bought it, I wrote it and put it in mum's hand to give to him. I did ask her what to write when dad was out but she said 'something nice, whatever you think love' 57 years of marriage celebrated.
Mum now likes the day care unit apparently they are 'lovely' to her there. She comes home with her nails painted a different colour each time and Dad gets 3 hours to breathe. She is deteriorating and we are valiantly repeating the mantra 'it's the illness it's not mum'