Wednesday, January 04, 2017

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.

9 comments:

Susan Dougill said...

It's a nasty horrible disease. Your mum will never be able to make the decisions for herself anymore. It's hard to say I am afraid. My gran had to have alarms fitted but my dad lived close by. She would turn the fuses off, turn the boiler off and other such things. My dad taped them up, put signs on but she still did it. Usually at 2am in the morning. She would then lash out if he asked why. I even saw her slap him a few times. Then came the forgetting of the oven etc. Had to be disconnected. In the end the church had to ask her to leave the arms house as she nearly burnt it down 3 times. There was money hidden all over the house. Luckily she lived in a small village that would take her home if she wandered. Then my mum n dad had her at home for the next six years. It nearly killed them in the end. No sleep. You couldn't leave her in a room on her own for fear of what she would do. Doors had to be locked so she didn't try to run home because she didn't know where she was. The anger, the stress and the fear were the worst. She would spend the day trying to sleep and cause problems all night. She ended up in a home but only lasted 6 weeks as it turns out she had cancer by then. When she was in a specialised home it was brilliant. They knew how to interact with the patients. At the time my gran was about 3 in her brain. They sang, they danced, played balloons. The care home had different sections so as the disease progressed they could be in a unit right for their needs. The first baked, played games went out for trips, had fun. It then progressed further and gave them activities to their level. Each unit looked similar so the surroundings stayed familiar. It gave the family peace and her some fun before she died. She will forget more and more it is you that feels the pain. To be honest I handled it by thinking my gran had gone a long time ago. She was just a stranger for a number of years.
I really hope you feel better soon. You have been through a tough Christmas.

julochka said...

we (and by we, i mean my sister, to whom the burden falls because she's 8 hours away by car, not 18 by plane) are looking at an assisted living facility. the cars/driving are our big concern right now, because she's a danger to others on the road. it's just heartbreaking.

celkalee said...

I am so terribly sorry. When you first mentioned the disease some weeks ago I was going to comment but felt it was not the time. you needed to see your Mother and put it all into your perspective. It seems you have begun that. My personal experience has been fraught with so many stresses that I sometimes look back over the past four years and wonder how I have managed. My MIL lives next door, for 45 years. She has one of those strong and rather intrusive personalities that require a strong personality to maintain balance. The dementia started years ago, the lies and manipulation. When you mentioned lies you struck a cord with me. When her husband died it became apparent to everyone that he had covered for her behavior and chastised us for mentioning some innocent observation. He was trying to protect her. In this period of time we have kept her in her home and cared for her every day, 24 hours a day. Husband has carried the major load in the last year, my health is compromised and I just can't do it anymore. She threatens suicide if we try to place her. Sadly, I doubt if she could even figure out how to end her life but the drama is enough for husband to re-think his plan. At least 50 times in the last two years. She used to temper her words and actions but at this level of dementia there are no filters. She is 94 now. Now we cannot take her in public. She is rude and vicious, has tantrums and acts out when she perceives some sort of slight. No one is disparaging her, it is just her perception. She insists on wearing old dirty clothes, never did that before. Won't comb her hair. Has not showered or bathed properly for 3+ years. She refuses to let me care for her that way. She does "wash-up" with supervision but there is a lot to be desired. Hygiene and safety issues become a daily struggle. Your situation is more complicated because you are so far away. My opinion, go with your gut. Proceed with finding placement. She is not safe on her own. She will fall, set the house on fire or have an accident. She will hate you for it. That's OK, her real self is already half way gone. By the time everything is in place your Mother will be the person who used to inhabit that body. My thoughts are with you, my empathy sincere. A dreadful disease, it is the bane of our generation.

Feisty Harriet said...

Ouuufff, right in the feels. This is so raw and I'm so sorry you are having to work through all these difficult and impossible feelings and situations.

xox

DahnStarr said...

This has been a topic with my neighbor and I in regards to her cousin. Her cousin moved back here (rural Nevada) to help take care of her mother who is in her 90's. After staying with her mother for some time she decided to sell her place in California and buy a home here. My neighbor was telling me how cute the place was and she wanted us to meet. We planned and outing to a craft show, toured the new house, and had lunch. It was lovely. When the cousin got out my car I reminded her that she was about to forget her bag; no big deal, we all do that. Later my neighbor told me that the family was concerned that her cousin was showing signs of dementia. To be honest, I didn't see it. To me she was a bit dingy but sweet. Then over Christmas my neighbor was telling me that her cousin flew back to California to visit with her daughter. Neighbor drove her cousin to Salt Lake City and they had scheduled an airline assistant to make sure she made it on the plane. However, when she landed in California she managed to get of the plane on her own and got herself lost in the airport. She called my neighbor from the airport (not her daughter) not knowing where she was or how she got there. She didn't even remember the drive to Salt Lake City and that takes four hours. After a lot of family panic the daughter was able to find her. Neighbor said that they have had her tested and she has had scans but there isn't any official signs of dementia. I haven't had personal dealings with dementia but after speaking with my neighbor I can see how life changing it is for the whole family. All the 'feels' lady and hope your poor jaw heals.

cestlavietlb said...

I have no useful stories of been there done that. Only a lot of love to send. I'm sorry that you and your family have to deal with this xx

Molly said...

Terribly sad Julie, so sad.
My brother and sister-in-law are getting into this territory with her mother and it's very disturbing for everyone, but the key thing to remember is - least of all for the person affected.
The doctors keep telling them this, to try and disconnect their own emotional responses when making rational logistical decisions. The patient is not feeling this as they would have before they had the disease.
It all sounds terribly sensible, but I don't know how one does that when dealing with one's mother. So sorry.

Ariadne said...

I am really sorry dear!Oh how hard this is!Courage and patience!AriadnefromGreece!

julochka said...

@celkalee - it helps to hear about your experience. as awful as it sounds, it makes me feel less alone.

@feisty harriet - thank you. it's SO hard.

@dahnstarr - there is SO much of this disease around these days! maybe it's just that the baby boomers are aging, but i wonder if it also has to do with how we have lived our lives. :-(

@cestlavietlb - thank you. it helps, really it does.

@molly - it's so hard right now. i have to get my head around it.

@ariadne - thank you! it really does help to know that people all around the world are reading and care.