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A journey of care giving for a loved one with Alzheimer's |
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For the past 91,929,600 seconds I have been the primary (and often sole) caregiver for my mom who has Alzheimer's. To save you the math, that's 25,536 hours, or 1,064 days, or 152 weeks, or 34 months - almost the equivalent of the time spent in college obtaining a bachelor's degree. In hindsight had I begun this journal at the beginning I'd have enough material for a book or possibly two or three books. But in reality, I had no words to write. I was grieving, deeply, for my dad who died from complications of cancer and heart disease in the beginning (and still). My grief was scattered, though, hidden in the folds of my pillowcase and under the hot water of the shower, carried to the icy waters of coastal Maine, the windy streets of Chicago, and the vast dark wilderness that is Alaska, and buried directly on top of all those words I used to write every single day. I was grieving, as well, for the loss of the life I once knew. My own home, my children, my husband, my shelves full of canned goods carefully put away from our extensive garden, my dining room table that we saved for for years, my old cat that died of grief in my absence, sleeping in on Saturday, baking pizza in the cob oven and eating in lawn chairs in the yard with turkeys and chickens begging for crumbs, hiking in the woods, milking my goat, ... all those day-to-day activities everyone takes for granted ... vanished in an instant. And then the grief for the living. The adopted daughter who succumbed to her mental illness ... my mother with Alzheimer's. And all I could do was stand and watch the hurricane unfold. I tried to keep writing. I enrolled in classes, I attended writing groups, I jotted down half-thought ideas on scraps of paper. I created mini-poems on twitter. I blogged, sort-of. I threw words at the bubble and hoped a few would find the cracks and leak out. Finally, I gave up. And yet, I didn't give up. I set priorities. When your mom can no longer bathe herself, remember her name, or pour a glass of water, a new chapter in the life of a fictional character takes a back seat or gets off the bus altogether. |
| The mess ... oh so much mess. I'm guessing I had the neatest toddler in history, because he never made messes. Sure he played in the mud and liked to help in the kitchen. We had the odd spilled drink here and there and play dough crumbles, etc, sure, but he wasn't messy. He didn't get jelly stuck on his face or smear peanut butter from his fingers on the table and chairs and clothing. He was just a neat kid. Not so with mom. Mom is the very definition of mess. If something can ooze out of somewhere, she will run her hand through it then run her hand in her hair across the back of a chair down the wall then lick her fingers which makes it even worse and finally wipe it down her pants or sleeves. AND she does it all so fast I can't stop her and clean her hands off first. As I mentioned earlier, poop is a problem as well. Food in and food out. If someone would just invent a solid pill that would give her all the nourishment she needs with minimal output, that would be great! I'd spend a lot less time cleaning stuff. And avoiding touching things. This is hard for me. I need stuff to be clean. I'm the person at the grocery store standing in line with items piled in my arms so high you can't see my face. Yes, that's me behind the orange juice and head of lettuce. Why? because the thought of touching a basket handle that hasn't been sanitized makes me sick to my stomach. So the joy, oh the joy, of cleaning up after my mom is really really really really really really hard. |
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