A journey of care giving for a loved one with Alzheimer's
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.
|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.
|Poop. Poop. Everywhere there's poop. Poop in the hallway. Poop in the chair. Poop on the cabinets. It's everywhere.
Mom is obsessed with cleaning out her bowels. Obsessed with a capital O. But do you think she can do what it takes to keep them clear? Oh, no no no.
If only she'd walk around the block, or even to the end of the drive. Or drink some water instead of a coke, or eat salad instead of ice cream she'd thrive.
But instead we miss out on day after day after day of beautiful weather when we could be working at the farm so we can wait on her to poop and then clean up the mess.
I'm really losing my mind.
|They say anger is a stage of grief. You get angry at whatever happened, at the person who died (or in this case is dying slowly every day), at circumstances beyond your control, at everyone and everything ... and then it passes. You're supposed to move on to the next phase.
But for those grieving the loss of someone with Alzheimer's, the next phase is 8 to 10 years long. Moving on becomes a goal that is unattainable. Angry is the new norm.
When grief first sets in pain is the only thing present. Every emotion is the same, exaggerated and frightening. Love, anger, joy, sadness all dissolve into a sticky goo impossible to separate. So when anger sets in, the road out of grief suddenly appears. It is a defined emotion in the sea of goo. And usually, in normal grief, anger finally leads to defining love and joy and happiness again.
Alzheimer's grief, on the other hand, is the cosmic black hole. I find myself waffling daily, or sometimes hourly, between anger and joy or anger and love or anger and hate or ... you get the picture. While I've been in the anger stage long enough to have separate emotions now, they always give way to anger. It's like there is no end to this. It's exhausting - trying to not be angry, to just be happy and not worry for one day, to find some kind of peace, to function normally in the world and around other people when normal doesn't exist.
I'm unsettled because of it. Perpetually unable to relax or enjoy anything for more than a few moments.
|I've never seen a purple tree
That's quite as lovely
As a tree should be
With yellow bits here and there
And blue and pink too
Please come, let me share.
Mom had always been rather colorful in an odd way. She fancied herself a painter and artist, but she never really took the time to learn properly, and she wasn't very good, but she enjoyed the attempts so no one ever told her otherwise. In other ways she learned just enough to pass on skills to whoever would listen. She was forever fascinated by the color of the trees and the different shades of greens in the countryside or reds in the sunset.
So when she started talking about purple trees with all the lovely balls in them, we ignored her, as usual. In one ear and out the other.
We now know one of the first visual changes in Alzheimer's is mistaking colors. Seeing bright purple trees is a common early symptom.
She also thought, again so very mistakenly, she was a gourmet chef. Adding ingredients to long held recipe that didn't work at all was a hallmark of hers. I always picked out what didn't belong. When I was eight I removed the candied orange rind from the lasagne and dropped it on the floor, but by the time I turned eighteen I simply offered to cook myself, claiming I needed to do something to relieve the stress of university.
People talk about missing their mom's meatloaf or chili and I think I must be a horrible daughter because I don't miss anything that my mom cooked. I do miss some of the hysterically funny comments my dad made about what she cooked (never in front of her, by the way). Although he ate every bite full and would never have allowed us to show her disrespect, he clearly understood that she couldn't cook.
But there was nothing funny when she started adding rotten meat and moldy vegetables to her dishes. Or packing away leftovers in the laundry room.
While the general population understand that people with Alzhiemer's lose their memory, they don't comprehend the vast amount of other issues that arise due to executive function failure. When the brain goes haywire, every component of life is affected, and some of the earliest ones in this disease seem absurd.