The Middle of the World at Christmas

Something a little different today but if you’re wondering how it relates to the blog theme of sisters and sanity, let me assure you it does. Specifically to sanity and especially to mine. I’ve categorized this under self-care which is an area where so many caregivers go wrong. They forget to do it. Or they tell themselves, they couldn’t possibly. That it would be wrong even unforgivable to, as in my case, leave their family member alone. I believe in telling myself the truth. Jerri will be okay. She is not really alone. Telecare, Bryce, Brian are there if she needs assistance. She also has Catherine and Bronwyn, friends in her building, and, of course, Kiki, the bird.

Stan and I are in Cuenca, Ecuador for Christmas. We are doing something we love: traveling and experiencing other cultures. This is one of the ways I feed my soul. Today I feel so . . . full. There is nothing that compares to spending a holiday in another country – nothing! It is particularly healthy for me. Christmas at home makes me sad. I am no longer invited to my family’s festivities and even if I was, I wouldn’t feel right about excluding Jerri which has been the norm for decades. So Christmas in the states is complicated for me. But Christmas in Cuenca is simple, exhilarating, festive, a huge celebration – exactly what Christmas should be.

Last night I could see fireworks out our hotel window. Fireworks to celebrate the birth of Jesus. Now why didn’t I think of that?!

Cuenca is known in this country for its huge Christmas parade which is called Pase Del Niño Viajero, a children’s parade honoring the traveling infant Jesus. In the early 1960’s a statue of baby Jesus was taken to Rome to be blessed by the Pope and upon its return, it was paraded through the streets. Today, there are many floats dedicated to scenes from Jesus life, also children dressed as Spaniards, wealthy colonialists, Roman soldiers, angels, gypsies (no idea), Mary and Joseph, wise men, shepherds, natives from the Amazon and Incan civilizations, and quite a few Santas. Smurfette and Papa Smurf also made an appearance. I guess there’s no telling who will show up for the children’s parade. I even saw Satan but decided not to waste any pixels on him.

Many of the floats, and I use that term loosely, feature Christmas dinner, the actual pig, chicken, or guinea pig (and I don’t mean alive) which will be eaten later. Dinner is usually quite well dressed – I saw a chicken with earrings and a ribbon around it’s neck. Keep in mind the parade lasts 6 hours. Yum!

Here are some of my favorite memories.

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Look closely at the pig on the back of this young girl’s horse. That’s a Budweiser in its mouth!

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Children attending the parade can get a picture taken with Santa Paws! I love a country who loves its dogs. Merry Christmas and Feliz Navidad!
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The Mysterious Disappearance of KiKi the Bird

Remember the bird I bought for Jerri about a week ago? Last night she called distraught. KiKi (the bird) was missing.

“He’s gone. I’ve looked everywhere. I put him in the aquarium before walking to the mission for dinner but I didn’t cover it with a blanket. When I got back, he wasn’t there. I’ve looked all over the apartment. But he’s not chirping. If he was here, I’d hear him.”

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The bird had to be in her apartment. Where else could it be? I looked at the clock. 10:30 pm. It was too late to drive over and help her.

“The only thing I can think is that I only thought I put it in the aquarium. Maybe it was still on my shoulder when I went outside. Maybe it flew off between here and there and I didn’t realize it. If its outside, it will freeze tonight. I just wish I knew it wasn’t outside.”

My heart sank. For you and me, it is inconceivable that we could leave the house with a bird on our shoulder and not realize it. But for Jerri, I have to concede the possibility. I have wondered if there isn’t some cognitive impairment in addition to the bipolar. She has had significant brain trauma from ECT treatments, from a blow to the head in a car accident, and from seizures following the crash. Maybe there is residual damage.

Emotions bombarded me. Sadness that the bird was gone. Empathy because Jerri seemed genuinely surprised something had gone wrong. Irritation that I was right. She wasn’t ready for the responsibility. Anger at myself for not listening to my gut and giving her a gift card for groceries instead of the bird. Horror that poor KiKi would likely be some stray cat’s dinner. Frustration at Jerri’s disability. Dismay because Jerri was so excited and now look what has happened. Despondent because this is likely how it will always be with Jerri.

“Or maybe someone broke in and took it.”

“Why would anyone steal a bird, Jerri? Didn’t you lock your door? Is anything else missing?”

“He’s been really loud all day. Maybe they got sick of the chirping. Yeah, I locked my door but it’s easy to open with a credit card. I’ve done it myself a thousand times. Maybe they got the bird and threw it outside because of the noise.”

Again this wouldn’t happen in my world. But Jerri lives in a community for people recovering from mental illness. Anything seems plausible.

“I just wish I knew he wasn’t outside. I looked around and didn’t see him. He’ll die out there.”

I could tell she wanted me to drive over. She wouldn’t ask but I sensed she wanted me to. I couldn’t. Not true. I wouldn’t. It was late and I had an early meeting at work the next day. Maybe I could drive over at lunch tomorrow.

I tossed and turned all night. I prayed for the bird—seriously prayed. At least 5 times in the night, I woke and asked, “God, show her where it is. Don’t let it disappear without her knowing what happened. Let her find him. She has nothing. She is so lonely. Bring the bird back.”

In the morning, I was grouchy from lack of sleep and because I let this happen. I resolved not to buy a replacement. Jerri would be upset about that and if she really wanted another bird, she would find a way to get one without me.

I called her at noon to see if she wanted me to come over and look for KiKi. She didn’t answer. I said another prayer. Only God knew what had happened to that bird. I called her again at 2:00.

“I found it!” she was triumphant.

“You FOUND it?!! The bird?” Oh sweet, wonderful God! “Where was it?”

“In my drawer. I must have left the drawer open when I went to dinner. He snuggled down into my clothes and I didn’t see him. The light isn’t good in here and you know I can’t see well. I closed the drawer last night after looking for him. This morning, I could hear him chirping but couldn’t find him. I had an appointment with Bryce and when I got back I set my mind to tracking him down. And I found him!!”

I wanted to race out into the hallway and shout, “She found it! She FOUND it!” Instead I praised her. “Good for you, Jerri! I’m so glad.” We celebrated together. Such a small thing in my world but in Jerri’s, it is everything.


The Dilemma of Duality

My sister and I went to lunch today. When she called to discuss restaurants, she suggested a pricey place where we’d gone as an early Thanksgiving treat. Keep in mind that whenever we go out, I pay.

“That’s a restaurant for special occasions, Jerri. That’s not the kind of place I go for an everyday lunch.”

“Yeah, I know. I’m just hungry. And I was thinking about that wedge salad. It was so good and I feel like wine.”

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“Well, I want it.”

“The place where we’re going doesn’t serve it.”

“Well then, let’s go some place else.”

Grrrr. It’s not that I have issues with wine. Or that I’m a cheapskate. Its just that Jerri has a dual diagnosis of bipolar disorder and substance use disorder—its irresponsible to buy her alcohol.

Jerri hates the substance disorder label. Moving here gave her the opportunity for a fresh start and she didn’t want me to tell any of the mental health professionals about that diagnosis. I couldn’t honor that request. She was in pretty bad shape and I’m not equipped to determine what is psychosis and what is drugs. When Jerri was in her 20’s, she was terribly addicted to cocaine. She believes the ECT treatments she had in her 30’s cured her of cravings and I’m pretty aware of where her money goes each month. I’m confident she’s not buying street drugs but I’d only be fooling myself if I didn’t acknowledge there are other ways to get them.

What most disturbs me is the unhealthy relationship she has with ADHD meds. I’ve seen her beg and conjole her psychiatrist and her internist for a prescription. In the past when she’s been told “no”, she’s looked for another doctor. That is a classic red flag. Bryce has been very clear that if she does that with him, she will lose Telecare as a service provider.

I’ve been quite vocal with both Bryce and her internist about my concerns. Bryce will not prescribe ADHD meds for her but her internist continues to do so. He sees her monthly and tests for substances each time before writing the prescription. I still think its a bad idea.

Ritalin is the only one of her meds that she never forgets to fill. It’s also a schedule 2 controlled substance. “I need it”—three of the scariest words in sister-of-dual-world— “and I can’t focus without it,” she says. “I can’t read. I can’t crochet. If you only knew what it was like for me when I don’t have it, you’d understand.” I am concerned that Jerri tries to solve every issue with medication.

Before she moved to her current living arrangement, she would hide the bottle or carry it everywhere she went. It was like her most prized possession. “Do you know the street value of this stuff? Everyone is after my medicine.”

In the past year, there have been about 6 times that her medicine has “disappeared” or she’s gone out of her right mind after filling the prescription or she’s “flushed it” because she’s realized she can’t trust herself with it. Really? Do I seem that naïve?

Once when we went to the beach together and I was keeping up with her meds, she took 4 pills when I wasn’t looking. She woke the entire house that night talking to herself. I thought she was having a manic episode until I did a pill count. She denied taking them and even went so far as to accuse my sister-in-law and my husband–utterly ridiculous to anyone who knows them. She became so out of control, I forced her into the car at 4 am and drove the 3 hours back to Durham where her case worker stepped in to help.

Afterwards, I started second-guessing myself. Maybe I’d been wrong and she was manic. Maybe I’d handled the whole thing terribly wrong.  I contacted one of Jerri’s former psychiatrists – someone who’d been helpful to me in the past – and described the beach episode. Before I mentioned the missing pills, she said “that’s not mania, that’s substance abuse.”

And see, that’s my problem. I can’t always tell the difference. And I can’t rely on Jerri to help me. Jeffrey, a therapist, says, “You know how you can tell an addict is lying? Her lips are moving.” It’s incredibly difficult to have a relationship with someone you have to assume is always bending the truth.

How do you know when it’s mania verses substance abuse verses a side effect of her medication? Once she had an episode so bad, she couldn’t figure out how to put on clothes. Her internist found cocaine in her system. Jerri denied having any knowledge of how it got there – she said her rooming house mates must have slipped it to her. Jeffrey would say “lying” but her story is not entirely improbable. Both housemates were also unstable and she was not getting along with them. She found a new living arrangement shortly thereafter.

Another time, I stopped by and Jerri wasn’t herself. She wasn’t thinking clearly and had strange muscular contortions. I called Bryce, thinking she had taken too much of her medication, and he said what I was describing actually occurs when someone has missed 2 to 3 days of the antipsychotic she takes.

Its also difficult for me to view substance use disorder the same way I view bipolar disorder. I’m just being honest. Experts consider both to be biological illnesses. There’s a fine line between substance abuse, where a person might still exercise choice and quit, and addiction, where the brain is biologically transformed with insatiable craving. How do I know she’s actually crossed that line and this is not just self-medicating?

In the end, I’m not sure it really makes that much difference. What I do know is the old adage you-got-to-let-em-hit-rock-bottom doesn’t work with Jerri. So I’ve had to draw boundaries. I’ve told her I don’t believe Ritalin or drugs like it are in her best interest. I will not help her with this medication. I won’t drive her to the pharmacy to pick it up or to her monthly doctor’s appointment. And I will not listen to any stories about how it mysteriously disappeared or someone stole it or how it must have fallen out of her backpack on the bus. My sister may be bipolar but she is still an adult free to make her own choices even ones that interfere with her recovery. I cannot control her. I can only control me.


Bold and Daring Adventure?

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According to yesterday’s fortune cookie, my life is a bold and daring adventure(!) That’s not exactly how I’d describe it. Right now, my life feels more like a stressful and overwhelming disaster.

As Christmas draws near, it seems the intensity of caregiving has kicked up a notch. There are a plethora of worries to choose from.

Jerri will be alone this year. I’m going out of the country and she wasn’t invited to the family festivities. Christmas is an extra depressing time for her and I feel guilty for leaving. Telecare, her mental health provider, will check in on her while I’m gone but still I feel guilty . . . and sad. No one should be alone at Christmas.

For Christmas, Jerri asked for a bird. Until recently, her housing complex did not allow pets. But there is a new property manager, Brian, and he consented. Pets are great therapy, I know this, but what if something goes wrong? What if she can’t handle the responsibility? What if she forgets to feed and water it or exposes it to environmental dangers? What if she forgets to clip its wings or can’t afford to and it flies away? I feel like I’m her parent, not her sister. I never had kids for a reason. Having responsibility now for a 48-year old is quite daunting. I don’t want Jerri dependent on me. She needs to be able to make her own choices and deal with the consequences. But I know her history with animals. We adopted Max, her dog, when she moved here and he was quite traumatized from living with her. She lost one bird when her air conditioning went out while she was hospitalized and another when it breathed in fumes from the Endust she was spraying. And how can she even afford the food? Her finances are a mess and she’s eating at the shelter, three meals a day.

Sigh. I bought her a bird anyway. I pray it will help her recover more of who she is. I pray this is not a huge mistake. I pray the bird doesn’t keel over.

My husband and I are at odds about Jerri’s car. Her license was suspended when she failed to show up in traffic court and she owes back property taxes. She attempted to sell it to the manager of a boarding house where she once lived. He made the first payment then absconded with the vehicle. It’s now awaiting retrieval from a lot owned by the county sheriff’s department. Detective Smith relieved said gentleman of said car upon incarceration. Really. You can’t make this stuff up. My life was amazingly sheriff-free before Jerri. The car has no keys, a dead battery, and four flat tires. We agree the car must be dealt with. We just don’t agree on when or how.

And as an extra cherry on top, Jerri just received notice from Brian that her rent is past due. Housing for New Hope, who owns the property, requires residents to have a payee so Telecare pays her bills. Telecare says they submitted payment. Brian says he didn’t get it and it’s Jerri’s responsibility as the resident to see that he does. Sigh. Do you see why I’m leaving the country?

And all of this is added to the end of the year madness at work and my own melancholy linked to the holiday. Can anybody out there relate?


Right Mindedness and Mental Flossing

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Since my sister came back into my life, I’ve had to do some serious mental flossing to remove build-up about mental illness. You see, mental illness doesn’t happen in my family. Nope, it just doesn’t happen to us. We might do some crazy-ass things but we take ownership of them—we are in control. To say that one of us is mentally ill would be to say that person has lost control. And that just doesn’t happen. Nothing happens to us that is not a direct result of choices we make. What others might question as mental illness, we know is simply willfull snubbing of societal norms. No, we don’t have mental illness in my family, by God—we have bad choices and misbehavior!

When I first suggested to Mom there might be more going on with Jerri than your garden variety addiction, she snapped. “Your sister is a drug addict, plain and simple. She could stop using if she really wanted to. She chooses the life she has. Besides, even if there was something else wrong with her, she brought it on herself. You can’t pump that many chemicals into your system without messing up your mind.”

Never mind that there were all kinds of signals long before Jerri ever popped the first pill. For as long as I can remember, she was terrified of the dark, a fear that did not subside with time. She saw people the rest of us didn’t– a woman in a billowy white gown would enter her bedroom at night and sit on her dresser. Jerri slept in a sleeping bag beside my parent’s bed up until she moved out of the house at 16. If they locked their door, she would lie outside pounding on it and crying hysterically. When she was 19, pregnant with her first child, and temporarily staying with my parents, she again pulled out the sleeping bag. This is so obviously not normal and yet, we all turned our heads and went about our daily business as if nothing out of the ordinary was happening.

What exactly is mental illness? The answer is a source of great controversy. Whole books have been written on it. According to the Collins American Dictionary, Mental Illness is “any of various disorders in which a person’s thoughts, emotions, or behavior are so abnormal as to cause suffering to himself, herself, or other people.” I don’t find this definition especially helpful. “Abnormal”, as I’ve already pointed out, is open to interpretation.

The jury is also still out on what causes mental illness. One current thought is there is both a genetic predisposition and an environmental trigger. You may have certain genetic markers common to people who develop a given illness but unless you are exposed to an environmental trigger which could be tragedy, trauma, or just about anything that causes major stress, you may never actually get sick. I don’t know about the predisposition part, but I suspect that everyone, given the right set of circumstances, has the capacity for mental illness.

There also appears to be a link between abnormal levels of some chemicals (serotonin, norepinephrine) in the brain and mental illness. Many psych meds focus on restoring balance to brain chemicals. I’ve yet to find a detailed explanation for how these chemicals become unbalanced to begin with. Again, traumatic events and other stressors are thought to trigger the process.

Certain medical conditions are also linked to specific mental disorders, hypothyroidism, for example, can cause depression and unclear thinking. One of the first things I did after moving Jerri to Durham was to make her an appointment with an internist. Her lab results showed her thyroid wasn’t making enough of the hormones it’s responsible for. When she takes her thyroid medication, there is a noticeable improvement in her mood and her ability to cope with day-to-day life. There are times when I wonder if the thyroid medicine might be the only one she needs. At some point, we will likely test that theory.

Over the years, Jerri has been diagnosed with bipolar disorder, borderline personality disorder, and substance abuse. She believes she really only has depression and that what has appeared to be manic episodes in the past were actually reactions to various medications. Bryce, her psychiatrist, is not big on assigning diagnoses. He says it’s more important to treat the symptoms than it is to give it a name. What I like about Bryce is he tries to keep the number of meds to a minimum and he is not quick to change them. He also won’t prescribe a med just because she wants him too. Before Jerri moved, her psychiatrist changed her meds every single month and basically prescribed whatever Jerri wanted. Not sure what she was thinking given Jerri’s history with substance abuse and the street value of the schedule 5 meds requested. But that’s a topic for another day.

When Jerri talks about her mental illness, she refers to “not being in her right mind”. After the fact, she knows when she has been there but sometimes, during the episode, she will try to convince me otherwise. I’m getting a feel for it now and can recognize the symptoms of not-right-mindedness. One being she will toss objects to see if I catch them to make sure I’m not a hallucination. Others include paranoia, constantly losing things, psycho-dialing me sometimes 12 times in a matter of hours, staying in bed all the time, not answering the phone, lack of interest in appearance, talking to herself.

One of my first breakthroughs in mental flossing came after watching an early episode of Fringe. Peter Bishop makes a powerful observation about his father, Walter, and mental illness. He says (in essence), “I always thought mental illness was something he was doing to us, to Mom and me. But all along it was something being done to him.” Despite what I was taught to believe, Jerri can’t help what is happening to her. She did not choose it. It chose her.

Another mental floss breakthrough came when I attended NAMI‘s (National Association for Mental Illness) Family-to-Family class. This is a 12 week course designed for people with family members recovering from mental illness. This class kept me sane during the months immediately following Jerri’s move to Durham. NAMI defines mental illness as “biological brain disorders that interfere with normal brain chemistry. Genetic factors may create a predisposition in some people, and life stresses may trigger the onset of symptoms.” Given what I’ve learned about the impact of the thyroid and how psych medicines work, there is no question it is biological or that it involves brain chemicals.
Identifying my sister’s illness as a brain disorder helps me approach it differently, more constructively and with less fear.

What I find more helpful than defining mental illness is defining mental health. WHO (the World Health Organization) defines mental health as “a state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community”. WHO does state that it is more than just the absence of mental disorder, however, based on this definition, I think its entirely possible for a person with a brain disorder to achieve mental health. And this gives me hope.

In order to really be there for someone diagnosed with mental illness, you have to get in your own right mind about it. You have to first examine what you yourself believe. You have to bring your beliefs into alignment with what is currently understood about brain disorders and recognize the person is not at fault. It’s like a swing bridge that was open so the tall ships could sail through and is now swinging back into alignment with the road. Sometimes my bridge swings back open and I have to again realign. But for the most part, I’m happy to say my family-ingrained perspectives have sailed.