i don't know what i expected

my, what a couple of weeks it has been. fevers, coughing, snowy nights in a hot tub out on a deck in the black hills, presents, cooking, food, games, skiing, snowboarding, a broken wrist, an infected jaw that's been building for some time (since a couple of weeks before the november 8 election debacle), two miserable flights in acute pain, lack of sleep, kindness, laughter, and sorrow. the whole gamut of emotions. and i am wrung out. it's somehow fitting that it all ended in a raging, painful infection in my jaw. i've always held my stress in my jaws, grinding my teeth at night. old habits die hard.

i don't know what i expected. i was apprehensive before we left, knowing that it was likely the last christmas where mom would remember us. but i had no idea how advanced it had become. the repetition of stories, i could handle and even enjoy to a degree, impressed at what she remembered (she remembers leaving us there by the side of the road near wasta and even remembered (which i didn't) that she needed water for an over-heated radiator). the constant asking where we were going and what we were doing next, just after we had explained it was slightly more exasperating. but, i could understand that this was how her mind now works.

and then there were the moments of spiteful anger that came seemingly from nowhere. so much venom over insignificant things - mostly in the form of harsh judgements in the retelling of events. either traditional views on the role of women and men rearing their head, or just plain judgemental nastiness. that was hard.

i keep wanting to write "but most distressing was..." and then thinking that the thing i'm going to write isn't the worst thing. but it was very distressing that when we gently tried to speak with her about how she probably shouldn't be driving anymore or that she doesn't need three vehicles, or that the big house might be too much for her (she has every surface covered in junk mail, so there is nowhere to sit or have a cup of tea and we couldn't stay there, tho' we did try one night), she steadfastly refused to admit or recognize that she even has a problem. this may be a symptom of the disease, but it also may be who she is.

but what might be the most distressing are the lies she tells. she forgot the christmas presents she had bought for all of us (matching slippers for 8), when we went to the cabin and every day the story changed as to where they were. sometimes it was our fault because we didn't take the vehicle she had loaded them into, expecting we'd take it. when we got home, they were right there on the couch, where they'd been, she'd never loaded them at all. she also took back her sewing machine, which had been lent to the child, taking it when no one was home. she venomously spat at me, when i asked her about it, that she had needed to use it herself. this despite the fact that she had left the cord behind and couldn't have plugged it in. i never did find it in her house, so i'm not sure where it is.

she was stopped by the police yesterday, 45 miles from home, driving 25 with the windows open (despite it being bitterly cold) and with the dome light on. wearing slippers. it's unclear whether they took her license or recommended that she be evaluated (i'm not clear on the procedure, but it's clear that we need to take those three cars away from her. pronto. apparently, this morning's lie is that she had to go to on a trip on such a cold day because i took all of her glasses with me when i left. the truth of that one is that we spent half an hour helping her find them on the day before we left and when i last saw her, she was sitting in my dad's chair, opening all of the glasses cases and burbling happily over her collection. it was a strange goodbye.

i'll allow that maybe they're not lies - they're the gossamer holding her thoughts together.  so perhaps they shouldn't upset me. but right now they do. it's a bit like this disease has amplified all of her worst traits - the solipsism, the selfishness, the lack of caring one iota about her grandchildren (which has always been a source of pain). they are all dialed up to full volume, replacing all of the things i loved about my mom - her willingness to drop everything and go off and have fun, to try new things, to buy a lot of tricked-out gear for a hobby and jump wholeheartedly into it. her enjoyment of good food. on christmas, when asked if she wanted to come and have some dinner, she said, "that depends on what it is," after i had worked all day, cooking the most beautiful beef wellington i've ever prepared. that day ended in a flood tears for me. it was all too much. and while i logically know that it's the disease and not my mother, it's very hard to separate and hard not to be hurt.

it is a crazy hurtful disease and it's only the beginning for us. i haven't even come close to getting a handle on how i feel about it.

note: i'm choosing to share the journey we've only just begun with alzheimer's here on my blog, as honestly as i can, because of one of the things i read was what we must speak it out loud. but also because this blog has always been where i work out what i think and feel and i've encountered no bigger topic where i have need for that. i by no means want to hang my mother out to dry and i realize i'm walking a fine line in that, but i know i'm not the first person to go through this and i hope that my journey can spark a positive conversation on a difficult topic. that said, i am no expert and have only just begun to read about the disease, trying to learn more. all opinions and thoughts on the disease are my own and from my own very limited experience. if you have any thoughts/readings/resources/experiences to share, please share them. this is all very raw and new for me and i want to grow in understanding and compassion.