DIARY OF AN ACCIDENTAL CAREGIVER

vera

On November 5, 2008 a Washington state measure known as Initiative 1000 passed by a margin of 59%, giving terminally ill people the option of medically assisted suicide. With the “Death with Dignity Act”, one may be prescribed lethal medication that would be self-administered.
Having worked as a part-time caregiver in that state for three years, I know why this measure got approved by the majority of Washington residents or why doctor-assisted suicide was even considered.
As I was forced by circumstances to stay in Washington longer than I wanted, I worked as a “reliever” from one adult family home to another, usually on Sundays, when most full-time caregivers wanted to take a day off. I witnessed the heartbreaking conditions of the elderly, whether they were in a $5,000-a-month room or in a $2,000 dormitory-type area. Patients who still knew what was going on were treated like children. Watching TV was their daily lot. Some of them would stare blankly at the TV or look outside the window for hours. Those who had lost their mind were largely ignored even if they screamed non-stop till the wee hours of the morning.
Four years back, a Filipino owner of an adult family home offered me free board and lodging in exchange for taking care of her patient. I had just filed for divorce and felt uncomfortable living in the same house with someone I was divorcing. I hated leaving my kids behind during the Christmas season but thought moving to that adult family home would be a good transition.
I got up one chilly morning and drove towards a retirement community close to the waterfront. A blizzard nearly threw me off course.
The 80-something patient assigned to me, whom I shall call Margaret, was suffering from Alzheimer’s disease. On the rare times that she was lucid, however, she seemed to realize she was slipping away and was desperate to get help.
“I’ve lost my life,” she told me one day. “Help me find it. I want to be with my husband and friends. Where are they? I want to be where I belong. I don’t know who I am.”
The owner of the care home told me to jot down my observations that she was supposed to file along with Margaret’s medical records. I obliged but when I left the place a few weeks later, I accidentally brought the notes with me and only discovered them in my suitcase recently, when I was looking for my kids’ old report cards.
I was dumbfounded by what I had written. I am sharing them with you hoping that you would understand why some people would rather die than go through this kind of life.
December 10
Margaret got agitated at around 5am, taking off her blouse and refusing her breakfast. She kept on saying she didn’t want another “drink” which the care home owner, Nessie, interpreted as alcohol. She explained that Margaret was fond of hard drinks when she was younger. She is now confined to a wheelchair.
Nessie believed Margaret got over-stimulated yesterday as she talked to her friend Grace and a former neighbor. She mistook them for her siblings who actually never paid her a visit. Long after her visitors had left, she repeatedly asked me to curl her hair. She kept on mentioning number two, three, four and five, while I polished her nails. All the while she thought she was drinking with friends and that she was going to stop at six (sixth glass?). She then announced she was a “boozer.”
December 11
Margaret woke up confused and obsessed with paying her bills. She said she had to pay her friend Grace for everything she owed her, that she had to buy her sister a pair of shoes and that they would dine out. This sister had never showed up and I was not sure she existed.
My friend dropped by at night. Margaret’s eyes lit up when she saw him – tall, lean, and engaging with his frank, green eyes. She instantly got bubbly.
After my guest left, she asked me to look for her dentures which she had not used in years. They kept on falling off so she declared they must be somebody else’s. She wondered who she kissed last with them or even bitten. She had a naughty glint in her eyes.
December 12
I gave Margaret a sponge bath, then I curled her hair and put some color on her cheeks. Nessie let Margaret look at herself in the mirror. I told Nessie not to, for I was not sure if Margaret had seen her reflection since she got ill. I was afraid she might get shocked.
But Nessie ignored me. She asked Margaret if she recognized herself in the mirror. Margaret dodged the question, saying she had no eyeglasses and therefore could hardly see anything.
Was she in denial? Anyway, she stared back at her image for a while. At dinner time, she got extremely agitated, fidgeting and nagging us to take her home. She was fumbling with some imaginary keys.
It was interesting to note that no matter how disoriented Margaret got, if Grace called on the phone, Margaret would recognize her right away and get on track. Grace was the one constant in her life, her best friend who never let her down.
December 13
Margaret suffered from diarrhea almost everyday. Today she got obsessed with going back to her house because she said she forgot to close the door. She asked for her house keys.
I asked Nessie to let me drive Margaret around the neighborhood to calm her down. I seated her at the back of my car. As I drove her around, she looked mesmerized by the brightly lit decorations in every home. I told her we have passed by her apartment and the door seemed locked. She appeared satisfied but at night, she could not sleep. She attempted to get off her bed several times. I barely slept myself. In the morning, I found her crawling on the floor.
December 14
Since Margaret had trouble sleeping last night, I decided to soothe her by playing some love songs on the stereo. Later, I let her sunbathe on the deck. Afterwards, I massaged her back. She still wanted to go home but seemed to enjoy the view. “God is behind nature,” she declared.
When Nessie talked to her over dinner, Margaret was her witty self again, waxing philosophical. When Nessie caressed her arm, Margaret thought a man was hitting on her.
“I don’t want any complications. I don’t want to hurt or be hurt,” she said.
Suddenly, Margaret seemed to have been transported to another era. She looked dead serious as she delivered these eloquent lines:
“Good things come to those who wait. I don’t want my life to end this way. Are we going to postpone everything? We make our decision. You want an appointment tonight. I said okay. So where shall we go? Let’s find a nice, quiet place to get acquainted. Let’s catch up with ourselves first. We’d better work it out before we make any plans. I don’t have my teeth on. Let’s go to a quiet place where there’s no one. Let’s mull it over. I don’t have much time. I’m 51. You have more time than I do. Let’s go to a place where we can snuggle up and nothing happens.”
When I tucked her in that night, she said: “I’m not in the mood for big-time lovemaking, are you? Times have changed. When you were young and gay, things just happened. God is in charge. When He wants things to happen, they happen. What God wants, He gets. But I don’t want to make love without dentures. It’s awful to kiss somebody without teeth. God, I’ve forgotten to ‘lovemake.’ But tomorrow’s another day. Tomorrow’s another night. Who knows what will happen?”
December 15

Nessie confirmed my worst fear, that Margaret had colon cancer. Our patient was getting restless each day. She kept on saying “Help me cope with life today. Help me get up.”
I showed her the picture of her husband with their dog. She recognized the dog but not her husband. I told her the man in the picture is James, her husband. She wondered where he could be now. I told her he died a long time ago. She didn’t quite comprehend it then complained that there was something “eerie” about this place with nobody to talk to and her husband and son were not beside her. (Grace told me Margaret has no kids.)
Later, Margaret thanked me for answering her questions and helping her remember her past. She begged me not to leave her.
December 16
Margaret woke me up at 12:30am. She was saying “I’ll give you 20%” over and over. She had taken off her socks, pajamas and diaper. She continued getting rid of anything that touched her skin including her blanket. I told her to go back to sleep. She was struggling to get up, kicking off the pillows. She tossed and turned on her bed for hours.
She hardly ate at lunch, then got agitated at sundown. I gave her medication and took her back to her room. She expressed frustration over her inability to articulate her thoughts. She said she couldn’t get her mind straight.
“I can handle you but I get nervous when I see new faces around me,” she said.
December 19
Margaret thanked me profusely for giving her a sponge bath, saying not even her own mother would have cleaned her that well. She told me she’d like to sing me the song “You’re so wonderful” except that she had forgotten the lyrics.
Today she was fixated on buying groceries. She wanted to list down what she needed but couldn’t write anything on the piece of paper I gave her. She had meant to sign a check for me but she said she had forgotten how to sign her name. I told her she didn’t have to.
This obsessive behavior and restlessness went on for weeks. Sometimes she would mistake me for her husband and would ask me to lie down beside her. She said if I didn’t like that “part of her” we might as well be divorced.
Margaret was becoming paranoid. She was talking tough. She was seeing imaginary people around her. At night time, she would ask me to take her home for she had been getting threats, she said, and being held up in this place against her will. She wanted to call the police. I advised her to wait for Grace.
December 20
Margaret seemed to be delirious, saying “Put the reindeer in the oven” repeatedly, like a mantra, all night long. How apt, I thought, that she would be obsessed with reindeers. Was she aware Christmas was drawing near?
Nessie heard the mantra from across her room and gave our patient Ativan. She complained that she was losing sleep over this senseless, repetitive talk.
A nurse was summoned the next day to run some tests. I was told Margaret was doing fine but I could feel she was deteriorating, that she was fast becoming an empty shell.
December 21
Margaret was getting extremely difficult. She would sit up all night poring over her medication, reading it upside down and pretending to read the prescribed doses over and over. Being sleep-deprived myself and feeling frustrated that I could not be with my children on Christmas, I yelled at her.
When I succeeded in getting her back to bed, she asked me to pray that God take her to heaven now.
“I don’t know who I am,” she told me.
I looked at her bony face, at her eyes that looked past me. I held her hand and prayed a simple prayer. She kept on mumbling “Father, take me now…”
“The only thing I remember is Cindy, my dog.” (But Grace told me her dog’s name is Sweetheart.)
When my friend came the next day, Nessie said I should pack up my things and not come back.
“I think you’re going crazy,” she told me. “You need to take a rest.”
I found it strange that Nessie would say that but I left without saying a word.
Later, I called to check on Margaret.


“Oh, she died shortly after you left,” Nessie said casually.
I froze. I seemed to see Margaret with curlers, reaching out for her dentures, delivering an appreciation speech which was ever gracious (“Thank you for the food, the ice cream, your sweet smile”), eager to issue a check for my service, to pay her bills on time. But she could not even find her purse.
“I’ve lost my life,” she had said. “Help me find it.”

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