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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. |
| I go through life just getting by these days. Everything revolves around mom's needs, wants, behaviors, whims. And in this time of Covid and quarantines and making sure she's safe, getting by is getting harder and harder. We can't take her out anywhere, not that she could function if we went out anyway, but we can't even put her in a wheelchair and walk into a store together. One of our only refuges was going out to dinner alone once a month, but that's gone now. Our home is our only refuge but it's filled with agony and misery and sadness and memories that won't end. I try not to think about it... to just get through each day. But today I felt someone touch my shoulder. You know how you can hug someone with just your hand, a reassuring squeeze, warm and gentle. Yet no one was there. My first thought was that it was my dad who died 4 years ago. I talk to him often. I mean, lately the conversations have been how lucky he is to not be here now. But he never squeezed my shoulder like that. I needed someone to hug me even though I don't like being hugged. That touch was like the universe telling me "It's okay. It's going to be okay." because I'm pretty well convinced NOTHING is ever going to be okay again. Our lives have been irrevocably altered by cancer and Alzheimer's and then this pandemic shows up and brings out what seems to be the last evil dregs of humanity. It's too much - the hate, the anger, the resentment, the arguing of strangers about a topic they know nothing about, the senselessness and inanity of trying to convince others to just have a little humanity and show a little kindness towards someone else...as if we should have to convince anyone of that. The weight of holding the umbrella over a world that doesn't believe they need to do anything because they aren't the ones getting wet is just overhwhelming. Even my husband has retreated into his phone. We don't talk anymore. I try. He's too busy with his nose in his phone reading some story written by some outlandish news media source that has no credibility anywhere in this universe and believing every word they say... too busy to look up... too busy to turn it off, put it down, and see what's in front of him. My son talks to me... or rather at me. We share similar thoughts, which is a help. He's autistic though. He is how he is and how he always will be. I can't change that. Mom doesn't even know who I am most days. She still sometimes knows she has 2 daughters but not that I am one of those daughters. She doesn't know my name. I am alone in this world... and I didn't even really realize how alone until that squeeze on my shoulder from someone who wasn't there reminded me that I can't even get a hug from someone real. |
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