Sister Love and a Set of House Keys
This morning I stared at my house keys and conjured my sister Sharon. Sharon doesn’t have house keys anymore. She doesn’t have a purse, or forks and knives or dishes or pots and pans anymore either.
Twenty years ago, she called me up at work to tell me not to panic but she had just gone blind. It was optic neuritis. She was in the first stages of multiple sclerosis.
Seven years ago I bought an apartment in Sharon’s building, just in case. She could barely walk but she was still driving then. Ashamed of being seen with a cane and then a walker, my sister Sharon rarely left the house except to drive to the grocery store once a week, until this too became impossible. Four years ago, we sold her car and I became her primary transportation, though she never went anywhere anymore except to our sister Bonnie’s house with me.
Sharon’s days consisted of gossiping with the doorman while getting her mail and doing laundry. She ordered groceries by telephone, talked to her friends and ordered things on the Internet. Her world had shrunk, sure, but life felt normal for us. We spoke on the telephone three or four times a day, we had holidays dinners at Bonnie’s and “sister days” ordering takeout and laughing.
More than a year ago, after suffering through an escalating roster of indignities that this awful disease brings, Sharon finally lost the use of her legs. I hoped it was only temporary, the unfortunate side effect of a spate of serious urinary tract infections, but I was wrong. The very last steps she ever took on her own were on Christmas Day 2002.
I suppose I saw her deteriorate but then again I didn’t.
After frantic months of doctor visits, ambulances, emergency rooms and hospitals, I couldn’t pretend anymore.
We tried a home health worker but Sharon hated having someone there and we couldn’t afford more than a few hours a day. That meant leaving Sharon in bed completely helpless until I returned home from work, or waiting for Bonnie to get there. What if there was a fire? Each moment Sharon was left alone was terrifying.
I could not sleep. I could not eat. I was crying all the time, even in my sleep, when I slept at all which was hardly. I began to bleed for no reason.
I wondered if I could retire from my job to care for my sister but I had to face the fact that I was not physically capable of lifting her and would still need to hire someone to help Sharon bathe and go to the bathroom.
Living with Bonnie also meant Sharon would have to be taken care of by a health worker. If I quit my job, where would the money come from to pay the health worker? Without a job I’d lose my health insurance and if my bleeding problem were serious, how could I pay for treatment? I couldn’t afford to pay for any of it unless I kept working.
Sharon was getting worse. My sister Bonnie and I had to find a place where she could be safe and receive proper care for her worsening medical condition.
Bonnie found a nursing home three miles from her house. Sharon has a sunny, huge private room with a private bath and roll-in shower. She gets physical therapy, learned to maneuver with an electric wheelchair and is making friends. She has a private telephone and her computer. Bonnie visits every day. I visit every weekend.
It is hard to make this adjustment, but we are all trying hard. I have begun sleeping again and my appetite has returned. I no longer bleed for no reason.
The mundane artifacts of my sister’s life, so carefully accumulated over the years, are being sold, given away or discarded. My sister Sharon must spend down a lifetime’s worth of possessions and savings to pay the $12,000 a month for the nursing home. That's why Sharon doesn't have house keys anymore.
Twenty years ago, she called me up at work to tell me not to panic but she had just gone blind. It was optic neuritis. She was in the first stages of multiple sclerosis.
Seven years ago I bought an apartment in Sharon’s building, just in case. She could barely walk but she was still driving then. Ashamed of being seen with a cane and then a walker, my sister Sharon rarely left the house except to drive to the grocery store once a week, until this too became impossible. Four years ago, we sold her car and I became her primary transportation, though she never went anywhere anymore except to our sister Bonnie’s house with me.
Sharon’s days consisted of gossiping with the doorman while getting her mail and doing laundry. She ordered groceries by telephone, talked to her friends and ordered things on the Internet. Her world had shrunk, sure, but life felt normal for us. We spoke on the telephone three or four times a day, we had holidays dinners at Bonnie’s and “sister days” ordering takeout and laughing.
More than a year ago, after suffering through an escalating roster of indignities that this awful disease brings, Sharon finally lost the use of her legs. I hoped it was only temporary, the unfortunate side effect of a spate of serious urinary tract infections, but I was wrong. The very last steps she ever took on her own were on Christmas Day 2002.
I suppose I saw her deteriorate but then again I didn’t.
After frantic months of doctor visits, ambulances, emergency rooms and hospitals, I couldn’t pretend anymore.
We tried a home health worker but Sharon hated having someone there and we couldn’t afford more than a few hours a day. That meant leaving Sharon in bed completely helpless until I returned home from work, or waiting for Bonnie to get there. What if there was a fire? Each moment Sharon was left alone was terrifying.
I could not sleep. I could not eat. I was crying all the time, even in my sleep, when I slept at all which was hardly. I began to bleed for no reason.
I wondered if I could retire from my job to care for my sister but I had to face the fact that I was not physically capable of lifting her and would still need to hire someone to help Sharon bathe and go to the bathroom.
Living with Bonnie also meant Sharon would have to be taken care of by a health worker. If I quit my job, where would the money come from to pay the health worker? Without a job I’d lose my health insurance and if my bleeding problem were serious, how could I pay for treatment? I couldn’t afford to pay for any of it unless I kept working.
Sharon was getting worse. My sister Bonnie and I had to find a place where she could be safe and receive proper care for her worsening medical condition.
Bonnie found a nursing home three miles from her house. Sharon has a sunny, huge private room with a private bath and roll-in shower. She gets physical therapy, learned to maneuver with an electric wheelchair and is making friends. She has a private telephone and her computer. Bonnie visits every day. I visit every weekend.
It is hard to make this adjustment, but we are all trying hard. I have begun sleeping again and my appetite has returned. I no longer bleed for no reason.
The mundane artifacts of my sister’s life, so carefully accumulated over the years, are being sold, given away or discarded. My sister Sharon must spend down a lifetime’s worth of possessions and savings to pay the $12,000 a month for the nursing home. That's why Sharon doesn't have house keys anymore.
posted by Ambimom at 7:30 PM
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