Sunday, June 10, 2012

Why anti-depressants might be depressing

Sometimes anti-depressants don't work.

Many anti-depressant drugs can potentially make a young person suicidal, as we discovered 26 years ago when my fourteen year old daughter was prescribed a psychiatric medication. She had no history of histrionics, hostility or suicidal thoughts until then. The horrific side effects lasted the two weeks she was on the medicine and resumed many years later when she started taking anti-anxiety pills as an adult.

She tried to quit the medication when she became pregnant but she experienced intense withdrawal and instead of kicking, her unborn child trembled and shook inside her when she skipped her dose.

She suffers guilt now, wondering if something is wrong with her son each time television commercials invite women who took the same drugs while pregnant to join a class action suit.

My husband's doctor recommended he take "happy pills," My husband thought the matter resolved when he said, "I feel happy enough, thank you." The doctor gave him several prescriptions at once and Jerry was unaware that one was for an anti-depressant. He began sleeping 22 hours out of 24.

"I thought I slept so much because I was dying," he said two months later when he learned he'd been on an anti-depressant and discontinued it

Potential effects on the unborn, teenagers and the elderly are recognized now.

According to an article in the Associated Press last year, the number of people taking psychiatric drugs has increased so much that in 2010, one of four women take such medication in a year, most of them 45 or older.

Physicians rarely advise patients if a psychiatric drug is habit forming, addictive, or permanent. They don't say "This medication I prescribe for you is a controlled substance so you  will have to visit me monthly for refills. It's also a street drug sold in dark alleys."

Patients are often unaware of the cost of their medication until they lose their insurance or Medicare/Medicaid coverage -- a bad time to discover a family member has an addiction or "chemical dependency" for drugs that can cost $600 a month or more. Stopping such medication suddenly can lead to the development or worsening of mental problems and seizures possibly leading to death. The warnings are printed on the prescription insert and magazine ads in teeny, tiny print, except for the warning of the financial impact if insurance changes.

People should not reject medication their doctor prescribes, especially if it works for them.

I just wish my family and I knew what we were getting into before we got stuck.

Although psychiatric medication works for lots of people, it didn't work for my daughter or my husband.

We should have searched the internet, read the prescription inserts and recognized when the bad symptoms started, less, not more medication was needed.

Maybe, as some doctors suspect, she has brain damage from concussions in the past, or from seizures she had at birth. Maybe the medicine has made her ill or an illness prevents the medication from helping her, other than keeping her in a twitching, restless zombie state most of the time.

When she started medication, she had just graduated from college, she had many friends and some were famous, she had one single core personality that many of us loved, she had a contract with a recording studio to write lyrics. She developed anxiety. She took a pill. She got depressed. She took another pill. She became outrageous and uninhibited. She was given another pill. She had seizures. She was given another pill. She lost touch with reality. She took another pill. Now she appears to be dying and nothing about her looks or sounds normal. She fluctuates between anger and dependency, defiance and compliance, restlessness and inertia.

I wish we'd read the fine print before we signed my daughter's life away. Maybe we could have reversed her condition before it got this painful for her and so complex for us.

Saturday, June 9, 2012

When a caretaker can't take care part III

While my knee heals, I am finding out how well my life functions despite being unable to keep up with my domestic chores and obligations.

Sheets were not washed for three weeks, but no one cared except me. 

My husband learned how to run the vacuum cleaner, and my daughter was as kind and caring to me as I had  been to her during her surgeries and illnesses. 

Daughter, husband and grandson were shocked when there were no clean socks or underwear in their closets and drawers. Now they are  grateful. They praise me like children in detergent commercials, marveling at "the feel, the touch of cotton" and my skill at discovering and defeating stains.

I couldn't shop, so my husband tried to, discovering that bread no longer costs eighty cents a loaf or green peppers, three for a dollar. He was so overwhelmed by the size of the grocery store and the cost of the produce, he came home with only a bag of candy and sodas for his dinner. 

I didn't argue about his diabetes or nutrition. Two hours later when he was hungry again, he went to a fast food restaurant for a hamburger and fries and he liked that so much, he started eating all his meals at fast-food restaurants. The old me would have scolded about his high cholesterol and high blood sugar but I was too sick to argue and within a few days of feeding himself, he was sick, too. He has new respect for the cost and nutrition of a tomato or casserole, as well as the effort and expense I put into all those meals he said he didn't want to eat before I took my hiatus from cooking.

At first my grandson was pleased he did not have to come to my house for dinner and to do homework. He began playing outdoors until dark, eating leftovers, watching a lot of television and guessing at his math and science questions. Then he failed the first math test of his life and his grades fell, just a month before the semester ended. He fell asleep on the drive to school. 

He told me to scold him about schedules and homework, and thanked me for scolding him in the past. He is angry with his mother for being ill and she is hurt by what she perceives as his rejection.

My daughter grows thinner, shaking more with chills and tremors. She's gotten the run-around from the insurance company, her doctor and the hospital so the tests she needed "tomorrow" cannot even be scheduled, a week later.

Jenny and I speak in a hit-and-run fashion about misunderstandings from the past and her fears for the future. When a memory or fear upsets her, she bolts.

It's very difficult, letting go. But I think being sick has shown me that I never really had a hold.  


Sunday, June 3, 2012

When a caretaker can't take care - part II

I take care of my sick husband, sick daughter, and my amazing grandson, but in April I lost ability to walk and then treatments on my bad knee kept me sick in bed for days.

 Injections of a gel to provide a cushion to stop bones from rubbing and chipping left my knee numb and made walking a greater challenge.

It turned out I was allergic to the iodine used to sterilize the injection site on my knee. I spent most of three weeks in bed or on the couch, curled up with a lap top or my Nook.

Becoming incapacitated is a caregiver's worse fear, but something wonderful happened.

I couldn't manage driving my daughter to her monthly doctor visit. He thought her new complaints were psychiatric when it started six months ago. He diagnosed her weight loss as anorexia, her headaches, dizziness and tremors as anxiety. He thought she wore a winter coat even as temperatures soared to get attention and accused her of daily tanning bed use to account for her discolored skin when in fact she never sought a tan from sun or artificially. 

He dismissed her complaints. He said, "If you feel that badly, you shouldn't be driving. Do you really feel that badly? I could have your drivers license suspended." She does not own a car and rarely drives my car, but she loves having a license. Meanwhile, she kept shrinking, sleeping more and more, and being increasingly restless.

Such dismissals by physicians are not uncommon when a patient comes in with a label of "psych patient" or has a history of concussions and seizures.

While I was too sick to deal with yet another confrontation with her doctor, the caseworkers who provide her home care and give her medication decided to take her to her medical clinic. Normally people see residents at her clinic, but perhaps because of her caseworkers' concerns about the symptoms, she saw a physician who oversees the residents and was given a referral for a brain scan, to see an ophthalmologist, and for extensive blood tests.

A friend took her to the hospital for the tests, because I was still not feeling well. As sometimes happens, after an hour long wait she was informed that the insurance company hadn't been contacted by the doctor's office so the insurance company could pre-approve the tests and now their offices were closed.

I would have been angry about the mix-up in light of the urgency, and then mad at myself for being upset over something we encounter fairly frequently when tests are ordered. Waking up from a nap to hear about it wasn't upsetting at all, because Jennifer said, "The important thing is someone will try to find out what's wrong with me, and I'm not sick as a sign of being crazy. It's something they can fix when they find out what it is!" 

I'm relieved for the help received when I found myself helpless.

Wednesday, May 30, 2012

When a Caregiver Can't Give Care - Part 1

I should have remembered the tipping point into physical danger.

If a medical crisis with a loved one leads to 24 hours without sleep, I'm likely to suffer an injury to my exhausted body that never happens to an alert person. A stupid, absurd accident like falling down a stairway on a toy poodle, then sliding across the landing floor on the puppy puddle it was coming upstairs to warn me about as I was running downstairs for medication to lower my daughter's fever.

So if I've been up all night I refuse to drive in the morning, even to an Urgent Care Center or hospital. I also refuse to climb stairs, or to walk within six feet of anything that rocks, sways or is suspended from a ceiling. I will sleep in a waiting room chair in front of strangers even while a loved one is being taken for a cat scan or in critical condition.

In February, my husband attempted to make a bacon sandwich while I was interning at the  Oakland Press. He only claimed hunger that evening, but at bedtime he pointed to a square burn the size of the pancake griddle on the kitchen floor.

"Had a little accident," he mumbled. "Are you mad?"

"Are you hurt?"

"Of course not," he said, but when I asked how it happened, he said he suffered a dizzy spell, then fell against the griddle handle, which burned the floor.

My face turned hot, hands trembled. "How did you spill hot bacon grease without burning yourself?"

"I can't remember," he said.

I lifted his pajama pant legs before he could stop me, and saw blisters shaped like tears, dimes and quarters, some bigger than quarters, about twenty on the calves of both legs.

He said it didn't hurt. On Google, I read that the most severe burns damage nerves, cause blisters without pain, and require immediate medical attention.

We argued about whether he needed to go to the hospital, whether I would let him butter his blisters like his mother would have sixty years ago, whether his dizzy spell was symptom of another silent heart attack or another little stroke. When he began snoring despite my complaints, I moved to the living room, pacing and checking on him all night long and channel surfing through infomercials, World War II news reels, and shows intended for an audience of insomniac, maniac murderers that claim to be crime shows while actually showing methods to kill and tips on escape. I ran to check on him each time he choked or groaned.    
In the morning when our favorite Urgent Care Center opened, I was afraid to drive and he was even more afraid to let me try. The examining room had no chairs, and standing for more than a few minutes is hard for me, since that accident in 1979 with the dog on the stairway and the pin implanted in my knee to keep it from dislocating.

I told a nurse, who motioned for me to sit on the doctor's stool,  about a foot high with wheels. As I tried to lower my derriere, the wheels spun the seat out from under me and I sprawled across the floor, slamming my bad knee into the examining table.

The nurse escorted me to a chair in the waiting room and the doctor came out to assure me my husband only needed the blisters cleaned, salves applied, bandages changed, keep it dry. "But why didn't he feel pain?" I asked. "Why did he get dizzy?"

She shrugged. "He should see his doctor about that."

I knew he would not. "I don't want to go to the hospital, ever again," he said.

I thought my knee pain and mobility would get better, but each day it worsened, with my knee cap slipping to the left a little when I bought groceries or washed floors, despite the pin that worked for so many years.  

In April, x-rays showed that bone rubbing against bone caused splinters and debris, and the doctor sent me to a specialist warning it might be time for a knee replacement.

"You can't have surgery on your knee again," my husband said. "Who will take care of us?"

It's exhausting walking on a wobbly leg. By May I was napping and sitting even more than my husband, who suffers cardiac and vascular disease and my daughter, who suffers insomnia all night,  depression all day and confusion around the clock.  

Who would take care of them if I could not? We were about to find out.

Sunday, April 1, 2012

The long good-bye II

The hurtful things my mother said to my sister and me at our visit last week are haunting me now like ghosts.
Relaxing at home, I resumed reading a young adult novel I bought to share with my grandson, and suddenly I remembered Mom saying "You're reading a kids book on your Nook? I guess you can't handle anything more challenging now."  
But I didn't argue and then we read Nooks in silence, and Mom said the best part of my visit was the last two silent hours. 
Maybe talking to her is no longer an option, and sitting with her silently is best.
Maybe when I visit, she remembers things we enjoyed doing together the past twenty years, which we cannot do now, and I assume she is irritated with me when she is irritated by her limitations.
Maybe that's why she tells my sister in California that we had the best time ever, as if she forgets the unpleasant parts the minute I hug her good-bye or  as soon as she falls asleep.
Maybe she cannot remember her discomfort and short-temper with me, the same way she cannot remember that she told me the same story sixty minutes before she repeats it again, or the way she confuses names.
"Chris died March 5th, you know," she said and my heart fell to the floor, because Chris is my baby brother with small kids and a pregnant wife.
My brother Tim died March 5, 1989, when he was run-over trying to cross a road and now I regret arguing with her about which son was dead and whether she said the wrong name or I heard the wrong words.
I remembered friends -- several -- whose mother turned quarrelsome and controlling the last years of their lives, and doctors advised my friends that the person they knew as their mother was not there any more, that her heart and mind grew vague and dim as the ribbon of her life unraveled to the very end..
When I look at it that way, I don't mind letting my own mind and heart unravel with her.     

Saturday, March 31, 2012

The long good-bye - part I

"It's as if someone has taken everything sweet, kind and good from my mom and left an angry stranger," a friend told me last month. "She's become impossible to please!"

I knew what she meant, remembering countless friends who saw their mother or father change, like mine is changing. It doesn't happen to everyone lucky enough to live into their eighties and nineties, but it happens.

I visited Mom at her assisted living facility last week, and everything I said was the wrong thing to say, everything I did was the wrong thing to do, anything I asked about was the wrong thing to ask.

She accused me of lying about career accomplishments. When I offered to show her my awards, she thought I wanted to show her my warts and responded with disgust.

"Not warts, awards I've earned!" I said.

"You think I'm such a fool, I don't know that anyone can get awards for themselves at any old award store, and type up certificates? Or else if you got something, must be everybody got the same thing!"

Then the visit turned into a typical visit for the past year, like this:

She scolds me for wasting money she thinks I don't have, not helping her like I should and for offering to help when everyone knows she is very independent and needs no help, especially not mine because I have always been useless, even as a small child.

Once we could talk about anything, but now almost every attempt to start a conversation ends when she raises her hand as if policing traffic and if it's ignored, she shouts, "Shut up! Shut up! I will not listen to this!"

Forbidden: small talk, questions about how relatives are doing, asking about her health or telling her about mine, anything about politicians, news or the past, unless she has a statement to make, and then response or questions are forbidden.

If I don't call and tell my sister I'm in town, she's worried we are feuding and to avoid each other, we won't attend her funeral together but if I call my sister, she's vexed about having to go pick her up or getting her dropped off, because my sister cannot drive.

Mother always has an errand to run or a place to go, and when we arrive she mutters, "You are so thoughtless, not like your brother who drops me off at the mall or grocery store and parks my car himself. It hurts me to walk!"

"You could let me go to the store for you, or let me drive," I say, envying my husband whose idea of visiting Mom is to drop me off at her facility and scoot up the road to the Soaring Eagle Casino for the day.

"I can't let you drive because when you were 16, you backed out of the driveway into the neighbor's parked car, which proves you are a terrible driver."

She asks my sister to navigate, to tell her whether a bicyclist is approaching from the right or if a car or truck is about to enter the space she is trying to back into. Except my sister has had strokes, and gives answers like, "Well, I can't read this guy's mind but it LOOKS like he might speed up when he sees you backing out and if you don't stop, you MIGHT nail him!" as Mother is already backing up, so she slams the brakes when a horn honks or someone screams, and then she screams at my sister for being stupid.

The visit ends with her telling us how she will be dead soon, and hopefully the afterlife has more to offer, and then tells us her latest desires about her funeral arrangements, obituary notice and will. All visits have ended with what my siblings and I call "the death talk," even after pleasant visits in the past.

In better days, I thought she spoke of such things to remind me that our lives are temporary, happy times are fleeting, we must appreciate the quiet pleasures like pulling weeds together, playing with water colors, singing hymns or driving past places where we lived or loved.

In the good days, she never said she hoped the afterlife had more to offer.

She probably knew it couldn't.

Thursday, March 29, 2012

Managing Multiple Medications Safely

One of the most difficult things about taking care of others has been keeping track of medications they can and should not take.

Ten years ago, my husband, daughter and grandson took one medication a day but now it's closer to thirty regular prescriptions between them, and more drugs taken temporarily or for a specific problem.

Here are mistakes a caregiver might try to anticipate and avoid:

1. When a patient is hospitalized, they are often given a month's supply of medication before they leave the hospital and then a week later some prescriptions are changed again, with strength increased, decreased, medication eliminated or changed to a different generic brand. It may be hard for someone who is ill or disoriented to understand that a new medication replaces an old one. If the medication is for high blood pressure or high blood sugar, taking too much medication can be dangerous.
     Advice: Dispose of medication that is replaced or discontinued.

2. Hide pain medications or any medication for anxiety or depression, because visitors using the bathroom may look in a medicine cabinet and be tempted to partake.

3. Don't store gel capsules in a bathroom that gets steamy from the shower.

4. Patients do not usually advise a drugstore that a prescription has been discontinued even though more refills are available or the prescription has been replaced with a different strength or brand name. Someone taking more than 6 or 7 prescriptions with different expiration dates can then easily pick up one that has been replaced, and take too much. It's best to avoid "automatic refills" of prescriptions unless taking the same thing, same amount over a long period of time.

5. Keep receipts of medications taken and note if and what side effects occur, because it's often difficult to get records a few years later from the drugstore, especially if it has gone out of business.

6. An insurance provider may imply that a mail order drug company be used instead of a drugstore, and even pressure the client to use the services. Mail order prescription companies automatically fill any prescriptions sent to them by a doctor and mail the medicine to the patient, whether the patient wants it, already has a three month supply, or had a bad reaction to the drug. Refusing delivery is not an option. But maybe refusing to use a mail order service is an option even though it's not what the insurance provider "prefers."