I've kept a journal of Grandma's journey these last several years. I wanted to document it, though I really have no idea why. I guess I just wanted to be able to remember how this... this God-awful thing called Alzheimer's progressed and how we as a family reacted and adjusted. This is a journal entry from June of 2008, when Gran started wandering at night and my mother (the main caregiver) was exhausted and at the end of her rope. We finally began to face the unthinkable... putting Gran in a nursing home. ` Bhlogger
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WHAT I WANTED
I wanted it to be like in the movies. You know, where she wakes up and there is Papa or one of her best friends or her mother and father, there to take her home... home to that peaceful happy place beyond the light where we see all our loved ones and friends and old pets and we get to do all the things we ever wanted to do.
I wanted to lay beside her in her last minutes and be able to tell her how very much it meant to me that she was always there for me no matter what and how I would be eternally grateful for the pure and unconditional love she gave to me. I wanted to tell her that I will always remember the nights in front of the Christmas tree with all the other lights turned out and how she always let me lick the icing out of the bowl.
I wanted to sit with her one night at the kitchen table sharing a tub of Blue Bell ice cream and chatting about silly things and then wake up the next day to find that she'd passed away quietly and painlessly in bed in her own home.
Life is rarely like the movies, as most of us know. But ya know, I was kinda holding out for this one. Even some kind of watered down version of it would have been ok.
The reality is much different, of course. The reality is that my once sweet, talented, nurturing and loving grandma is now pissing on herself, can't find her own bathroom, yells at people who are not there, and takes a few swings at my mother and uncle when she doesn't want to cooperate. She can't remember who is who and will soon forget more than simply our names. It's like all those sci-fi books I read where some "being" drives off a person's soul and keeps the body for themselves, to forever shamble around like a zombie in the stolen shell of someone else.
We are now all agreed as a family that it's time for more skilled care than we can provide or afford at home and so we now must try to navigate the red tape of the government. They throw up road blocks, you know, intentionally or not... and these road blocks seem even harder to break through because you are already worn down from the mental and physical exhaustion of caring for your loved one and watching them waste away before you.
My mother and my uncle are on the front lines at home and so I am trying to make calls and figure out what Medicare pays for and when Medicaid kicks in and exactly how poor my grandma will have to be before we get any sort of assistance. What facilities will take her and what is the easiest path to get there there? What are we missing because surely we are missing something... there are simply too many hurdles to jump, too many forms to fill out, too many ways the government can deny responsibility for her care. Her husband was a World War II veteran and she was a good American citizen who made an honest living for awhile and then settled down to take care of her working husband and her children. She is the epitome of the American lifestyle during her generation. She and Papa did everything right.
Her Medicare plan (not Medicaid, the part considered to be the "welfare" version) will pay $22 per day after the first 20 days in a facility. Isn't that wonderful of them? That will save us $682 a month... the semi-private room will cost $3782 per month. This doesn not include any medical needs or her medicines. After 100 days you're on your own. Papa left her with a modest savings, a few CD's and a social security check that won't even pay for a quarter of a month in a nursing home. How was he to know that fifty years down the road the cost of living would be so high? And had he known, what could he have done? He made what he made, he paid what he had to and he saved what he could. Even had he been able to see into the future he could not have gotten blood out of a turnip, as the Southernism goes.
I am so angry. Angry that this happened to her in the first place, angry that our government would allow the elderly to be left to navigate the cesspool of government benefit offices that I, with all the research skills of a child of the internet age and a 36 year old mind, cannot figure out. Angry that my family has to go through this... we were all once so happy. I'm even, irrationally I suppose, angry at myself... what if I had not created this mountain of debt for myself? Perhaps had I been more responsible I could have pitched in some money and we would not be worrying about whether or not the fucking government will be there when we need them.
And life moves along despite it all.
I went to Peru and it was wonderful but it's already a distant memory. School keeps me busy at nights and work keeps me busy during the day and somewhere in the middle of it all I wrestle with the government and my emotions.
EDIT: Re-reading this I see that it might be interpreted by some as that we expect the government to "bail us out"... to take responsiblity of all my grandma's care.
This is not what I want. My grandfather saved and invested and bought land and worked for a pension and his social security all his life. What we want it is for MediCARE (not MediCAID) to work the way it was meant to work for people. What we want is for the medical costs in this country to be reasonable... so that middle class families like my grandparents do not have to go without the care they worked for and deserve.
We are not looking for the government to bail us out. I suppose those of you who have gone through this already know where I am coming from. And those of you who don't... well, I hope you don't have to find out what I mean.