Father’s Day

My father is dying. The Votrient he has struggled to take since January is not working. In fact, the renal cell cancer which metastasized to the lymph nodes in his chest has now spread to his lungs, the lining of his chest cavity, and his bones.

My mother still believes there is a chance for him to pull-through. Her Sunday School class is praying for him. God is still in the business of miracles.

But I know he is done. There is no fight left in him. He is stubborn, my dad. Dr. George, his Oncologist, tells him he must get out of bed or he will lose his muscle mass. He must try to walk and get some exercise. But Dad only walks from the bed to the bathroom. “I don’t feel like getting up,” he says. He eats minuscule portions and his parchment-thin skin is gaunt across his frame.

“Dad, you have to eat.”

“I don’t have any appetite. Nothing tastes good. I can’t keep anything down.”

“I understand that. You still have to do it. You either eat or you die.”

He has made his choice.

Jerri thinks he has seen his last Christmas. She’s not sure he will be here come August when she hopes to move into a new income-subsidized apartment with a washer and dryer. She has requested a two bedroom in anticipation of unsupervised visits with JM, her 10 year old, who lives with our parents. But the apartment complex wants copies of his social security card and birth certificate. My parents won’t supply these.

“She’s trying to get a two bedroom under false pretenses,” Mom says. “JM is never going to live with her. She doesn’t have a mothering bone in her body.”

“She is not misleading the apartment complex. This not about JM coming to live with her. This is about visitation and having a room for him to stay over a weekend.”

“JM can sleep anywhere. He doesn’t need his own room. He can sleep on the couch or a blow-up mattress. Besides, she doesn’t have any bedroom furniture herself. How is she going to furnish a room for him?”

Because I’m going to give her furniture. Stan and I have two guest bedrooms we never use. We are planning to downsize within the next four years. The bedroom furniture will not be going with us anyway. Besides, its hard to justify owning beds that are never slept in when my own sister lives in such poverty.

My mother and I are at odds. Not about my dad but about everything else. Mostly about Jerri.

“You don’t even know Jerri, Mom. In your mind she’s the same person she was twenty-one years ago. She’s a drug addict. You refuse to see her as anything else. She is not an addict. She is not the person you’ve always told me she was. And she is capable of being a mother. To you mothering is all about providing financially. That’s not what mothering is all about.”

“You’re right and she can’t provide for him. She can’t give him clothes, or food, or even a bed to sleep in.”

“That’s not true. She can’t provide for him the way that you can but there is more to life than that. But this is not about him coming to live with her – this is about him spending a weekend with her – not every weekend, maybe not even every month.”

The argument escalates.There is nothing I can say that she will hear. She hangs up on me. There is so much left unsaid.

The phone call leaves me empty and strangely proud. I stood up to her. I said what I thought. I didn’t raise my voice or bite back my words even knowing that to disagree with her means certain retribution. For me, this is progress. In 5 months, I will be 50 years old. And I am FINALLY able to stand against my mother.

At 1:45 am, Mom leaves a voice message. “Don’t worry about coming to the hospital for your Dad’s appointment. He feels the same way too. We can just sever the ties of the family and you can just make it on your own with Jerri.”

About the third year into our marriage, we borrowed $1400 from my parents which we paid back 2 months later. That was the last time I ever asked my parents for anything and I’ve been married for 28 years. Wow. Just not sure how I’m going to manage to “make it on my own.”

Dad has an appointment with his Oncologist Monday. I was going to join them because given my pharmaceutical background, I understand what the Oncologist says better than they do. Mom’s message is clear. I’ve been uninvited. More than that, I’m once again excommunicated from the family. Because I disagreed with her.

I call her back that afternoon. “Do you really think now is the time to sever ties given Dad’s situation?” She lets loose with anticipated fury. I am always bringing up the past. I don’t know all that went on. (Over 20 years go, before Jerri was ever treated for Bipolar.) I wasn’t there when Jerri went into Prodigal’s Community. I can’t get a word in edgewise. She is soooo glad that God doesn’t hold grudges against her the way that I do. She is soooo disappointed in me. She hangs up again.

I am done. I call my friend Susan who, more than anyone else I know, can empathize with mother issues. “My friend,” she says, “All I can say is there is some undiagnosed mental illness going on there. There has to be. Normal mothers just don’t behave that way.”

On Thursday, Jerri leaves 6 frantic voicemails while I’m in Zumba. They all say the same thing. Daddy is in the hospital. Mom is not there. She had called the house to talk to Dad and that’s how she found out. He’s dying. They are going to bring in hospice. This may be the last chance we have to see him without Mom. Jerri is going to catch the bus immediately.

I beat her to the hospital. Dad is curled up on his side. He is so very thin. His hair is totally white now and he has brown spots on his face. He is so fragile. I don’t have the courage to wake him. If Mom is telling the truth, he will not want to see me.

Jerri arrives and he awakes. For a moment, Dad is unsure of what he sees – his daughters – but he sorts it out. We are real. Not a dream. Not the morphine. He’s been in the hospital since Monday. He fell on his way to the car for his appointment. His Oncologist sent him to the emergency room when he arrived.

He’s been in the hospital 4 days and Mom never told us.

He says they are no longer fighting the cancer. They are fighting the pain. His Oncologist has given him a choice. Another drug like Votrient that may make him sick and unable to function but may slow the cancer or pain meds that will do nothing about the cancer but allow him to feel okay. Dad has chosen the latter, at least for a month, and then he will see.

I don’t tell him the awful truth – that every moment he doesn’t fight the cancer, it advances. It has spread so quickly, he may not have a month. The brain is likely the next stop on the Great Cancer Tour of his body and then he won’t have a chance to change his mind. It will take his mind. I struggle to breathe.

He says he doesn’t have much longer. I ask, “how do you feel about that?” He says, “I’m okay with it. I’m not afraid. At least not today. Ask me tomorrow and you might get a different answer.”

I am glad for him. That he’s not afraid.

From the hallway comes a public announcement. Visitor hours are over. I tell Dad we have to leave. He hurries to tell us one more story about the dream he had last night. It is not important. It is not how I want to spend my last minutes with him. I let him talk.

When he’s done I stand and he struggles to get out of bed. An alarm goes off. He is at risk for falling so they’ve tied an alarm to his bed. The nurse comes in and he says, “It’s okay. I just wanted to get up to say good-bye to my family.”

He hugs me. I know in my heart it is the last time. “I love you, Dad.” “I love you too,” he says and he makes a point of looking me in the eye. He knows it too. He hugs Jerri and tells her he loves her. We believe him. This is our real Dad, the way he is when Mom isn’t around.

Jerri promised Mom she would call after she gets home from her visit with Dad. She reports back to me the next day. “Your mother kept me on the phone for over an hour last night talking about you. Boy, is she mad at you. It’s kind of nice – her being mad at you and not me for a change.”

“I don’t want to hear it.”

“She said she’s not going to tell you when Daddy dies. She said you’re just swooping in because he’s dying.”

“Seriously, Jerri, I don’t want to hear it.”

“She said she doesn’t want anything else to do with you and neither does Dad. So I said, really Mom? Cause Terri was at the hospital last night and Daddy talked to her almost the entire time!”

I feel sorry for Dad now. Because Mom will hold my visit against him. She’ll be furious with him for not tossing me out of the room. It’s Father’s Day, probably his last one, but I don’t call. I’m afraid he won’t answer. Or he’ll say he can’t talk to me anymore. I’m afraid she may have gotten to him.

I can still see his face – his eyes penetrating mine. I can feel his arms around me, his stubbly cheek against mine. “I love you too, Terri.” Those words are a gift. They will sustain me for the rest of my days. I know that he meant them. She can’t take that away. No matter what happens next.

Love is Not a Commodity

About a month ago, I went to Chicago on a business trip. It was just overnight and my schedule was such that I really only needed an extra shirt, a pair of panties, and toiletries. I usually check a bag when I fly but I was packing so light, why not carry on? So I abandoned my standard packing system.

Instead of packing the toiletry case I always take, I tucked my liquids into a clear, ziplock bag and the rest of my essentials into a Clinique pouch (free to customers who spend $30 or more as part of their Spring promotion 🙂 ). Everything went into a backpack.

That night at the Hilton as I was getting ready for bed, I couldn’t find my contact solution. This is what happens when you abandon your standard packing system.

I called the front desk and the manager informed me the gift shop was closed, however, there was a 7-Eleven just a block away. Sigh. I put my clothes back on, took the elevator to the lobby, trudged the block to the 7-Eleven, charged a travel size of saline solution, and exited the shop.

As the glass door swung behind me, a homeless man standing on the curb called out, “Miss, can you spare a dollar?” I turned to face him and apologized.

“I’m sorry. I don’t have any cash. All I have is a credit card.”

He touched the brim of his baseball cap. I kid you not. “Well then, that’s all right. Don’t ye worry ’bout it. I thank ye. Ye looked me in the eye. Ye gave me respect. I thank ye.”

So here’s what I think about on Mother’s Day. Where was that man’s family? Why was he alone, living on the streets, begging for money? He didn’t seem any older than me. Where was his mother? When his mind slipped or he turned to drink, when he couldn’t hold down a job, when he failed to be the son she’d hoped he’d be, did she disown him? Did she refuse to take his calls or allow him into her home? Ok, maybe she’s no longer living. What about his siblings? What about children? Nieces? Nephews? Cousins? Where are they? Did they all just decide he wasn’t worth the trouble? That he didn’t fit into the picture of how they wanted their lives to be?

This morning at church, Steve talked about how when God told Moses who He was, the first word He used to describe Himself was compassionate. The Hebrew word translated as “compassionate” actually means “womb-like”. The safest, most loved you and I have ever felt was in the womb. Steve went on to say that God loves us not because we earned it but simply because we exist. Like a mother loves her unborn child before she even knows him or her. Steve said a mother’s love may be the closest model of God’s love that we see on this earth.

Sadly, that is not the case for all of us. We grew up in homes where love was a commodity. Something we had to earn. Some of us strived for decades in hopes of securing our mother’s love. Some of us are still striving. Some of us gave up a long, long time ago. Some of us thought we had attained it only to realize it was never permanent. Like a paycheck, we had to work for it day in and day out.

Some of us succeeded in life despite never having gained our mother’s love. Some of us were all but destroyed. Some of us lost our minds. Some of us tried to comfort ourselves with substances. Some of us ended up on the streets. Like that man in Chicago. Maybe it’s not his mother’s fault. But one thing I know for sure. If someone had chosen to love him, simply because he existed, he wouldn’t be homeless.

Some of us are handing down that same legacy to our kids, teaching them love has to be earned because that’s the way we experienced it.

I refuse to pass on that legacy to anyone. I dare you to join me.

Photo credit: Dustin Diaz / Foter / Creative Commons Attribution-NonCommercial-NoDerivs 2.0 Generic (CC BY-NC-ND 2.0)

The Lucky One

During the 8 months I was on my OMG-it’s-cancer blog sabbatical, a lot happened. I mean, a LOT. Not just with me, but also with Jerri and the rest of the family. I need to catch you up. But where to begin?

Hmm, let’s see. I could tell you about Jerri’s eviction and frantic search for new housing. Housing for New Hope, the organization managing Jerri’s apartment complex didn’t call it eviction, of course. They called it “helping Jerri to achieve her goals.” In all fairness, Jerri did want to move to a safer part of town but I don’t know. She was told she had to vacate the premises by October 1. She was given 8 weeks to find a new place and that’s not much time when you’re unemployed with bad credit and no deposit saved. Not to mention your income is only $700 a month and there’s a waiting list for all subsidized housing in the city. That reeks of eviction to me. Just stinks to high heaven. Plus your sister, who would normally help you is recovering from a thyroidectomy and treatment, which Hap, the apartment manager knew. It’s as if someone was purposely taking advantage of my incapacitation and inability to advocate for her.

I could tell you how Jerri found an apartment all on her own–a brand new apartment in an elderly gentleman’s home with a separate entrance in a good part of town with utilities included for $600 a month. Her new landlord interviewed several prospective tenants then called Jerri to say he really wanted her to take the apartment. I could tell you how she teared up when she told me. “He really wants me. Nobody ever really wants me!”

I could tell you about dumpster diving for a microwave that works just fine except for the LCD panel. Dumpster-diving. I can check that off my bucket list.

I could tell you about Jerri’s job search, because let’s face it, no one can live on $100 a month after paying for housing. I could tell you how “felony friendly” companies like Walmart and Sears hired her and then took back their offers when her background check included a 21 year old felony charge. A charge, BTW, that our parents filed. I could tell you how she persisted and again, all on her own, found a part-time position doing in-store promotion for a new dog food.

Those are all great stories filled with indignation, wonder, potentially useful insights, and tossed with just the right amount of snarkiness. But perhaps I’ll leave those for another day. What I find I most want to tell you about is this, a recent conversation with my sister. She was in her new apartment which is virtually unfurnished, sitting on an air mattress, which aside from one chair is the only place to sit other than the floor, and she looked around at the dumpster microwave in her tiny kitchen, her ancient TV on a bookcase (another dumpster find), and said, “You know, I’m lucky.”

I looked around too, and said, “How’s that, Jerri?”

Her eyes lighted. “You probably don’t think so because you’ve got a nice house and a good job making good money. You drive a Lexis and can pretty much afford whatever you want. But for a person like me, I’m really lucky.

“Just look at all I have!” She swept the room with her hand. “I’ve got a nice, safe apartment with heat and air conditioning. A lot of people like me don’t have that. They live in a ratty boarding house, or a group home, or they go to a shelter at night or sleep in box on the street.

She got up and took the 2 steps required to reach her tiny kitchen and threw open the refrigerator door. “I’ve got a refrigerator full of food.” (Her case worker had taken her to a food bank that week.) “Just look at how much food I’ve got! I can eat for weeks and weeks. A lot of people like me don’t have enough to eat.

She motioned to her coat closet. “I’ve got a coat and plenty of clothes and shoes.” (She buys everything at the Durham Rescue Mission store or Good Will.) “A lot of people like me don’t have clothes like I do.

She sat back down on the air mattress and looked up at me. “I’ve got you and Catherina (her case worker and friend). A lot of people like me don’t have anyone. They’re all alone. But I’m not. I’ve got you.

“When you think about all I have, I’ve got so much more than a lot of people. I’m just, you know, really lucky. For someone like me.”

You know, when I embarked on this grand adventure of helping my sister recover from bipolar, I never expected to be the one who gained anything from the experience. Life is just full of surprises.

10 Lessons from My Thyroid

Just when I was starting to get a vision for this blog, life took a little detour.

In May of last year, I went to see my Gynecologist for ye old annual visit. She walked into the room and before even saying hello, her eyes zoomed to my neck. “Oh, my. You have a nodule on your thyroid.” Pulling on gloves, she walked over and began feeling my neck. “Yeah, that’s a big one. You haven’t noticed it? We need to get an ultrasound of that.”

And no, I hadn’t noticed it. I try not to look in the mirror if I can help it. I’ve reached the age where nothing good comes of it.

So I did the ultrasound and the nodule was solid and about 4.6 cm in diameter. The size of a lime. That’s right. L-I-M-E. Not dime. Lime. No, really, I hadn’t noticed it. I’ve got a small fruit growing in my neck and I’ve got NO idea.

My Gyne said, “Well, we better get that biopsied. It’s probably nothing. Only 5% of nodules turn out to be cancer. But we need to be sure. If its benign, they’ll probably just keep an eye on. They won’t remove it unless it’s pressing on your esophagus and making it difficult to swallow.”

I had the biopsy, all the time knowing it was benign and worrying about how I would get them to remove it because I wanted it out. Out, out, OUT.

My Gyne called with the results of the biopsy. “It’s a Hurthle Cell Neoplasm,” she said. “You have to have surgery to remove it. There’s about a 35% chance that it’s cancerous and the only way they can tell is to remove it and do pathology.” She recommended a surgeon and scheduled an appointment.

Huh. This wasn’t exactly going as I’d expected. I googled “Hurthle Cell” and quickly wished I hadn’t. According to one publication, the probability of cancer increased with nodule size. It was 80% for any nodule over 4 cm.

The surgeon my Gyne recommended was an Ear, Nose, and Throat Surgeon. He does 100-150 thyroid surgeries a year. This seems like a decent amount except during the consultation, he repeatedly talked about removing the right lobe of my thyroid. Which was problematic for me since the nodule was on my left lobe. And again, size of a LIME, so pretty damn hard to miss!

I went home and consulted the All Powerful Internet (API). API suggested I might want an endocrine surgeon, someone who specialized in thyroid. I scheduled a second opinion with the Chief of Endocrine Surgery at Duke. She does about 15 thyroid surgeries a week. You do the math. I scheduled the surgery with her.

On July 3, the nodule was removed. One week later, the pathology report came back. It was official. I have Hurthle Cell Carcinoma, a rare form of thyroid cancer.

Now wait. Just wait. Before you tell me, “Thyroid cancer? Well, you’re lucky. That’s highly treatable. If you’ve got to have cancer, thyroid cancer’s the one to have!” Just consult API. Go ahead. Google it. Hurthle Cell Carcinoma. Yeah. That’s right. There’s some scary stuff out there. Metastases. Recurrence. Gulp.

On August 15, the rest of my thyroid was removed. After that, I followed a low iodine diet for a month. The low iodine diet requires you to pretty much make everything from scratch: bread, salad dressing, salsa, mayo–no prepared foods, whatsoever. No egg yolks, only 6 oz. of meat a day, no fish, only kosher salt. I lost 8 lbs. just because I was too lazy to even prepare food.

The diet rids your body of iodine stores in preparation for a body scan that uses radioiodine to light up any remaining thyroid cells in your body. Because thyroid cells love iodine, when you starve them for a month they soak up the radioiodine. The scan shows any metastases. I had none. Whew!

The scan was followed by radioiodine treatment (RAI) in October followed by 3 days of quarantine from my family. The RAI makes you radioactive–the Imagine Dragons song took on a whole new meaning for me–so you can damage the thyroid of other people if you touch them. The purpose of RAI is to kill all remaining thyroid cells in my body.

Since my surgery, I’ve been on a thyroid stimulating hormone (TSH) suppressant dose of Synthroid, a synthetic thyroid hormone I will have to take for the rest of my life.  TSH is produced by the pituitary gland and tells your thyroid to make more hormone. If you don’t have a thyroid, this message could cause any thyroid cells left behind to replicate, which could lead to cancer recurrence. The suppressant dose tricks my pituitary gland — I’ve got tons of thyroid hormones so it doesn’t generate TSH.

So here’s what I’ve learned through this experience.

  1. The thyroid is involved in just about everything. Sleep. Body temperature. Hair, skin, and nail health. Mood. Energy level. Memory. Concentration. Weight. Bowel function. Metabolism.
  2. There is still an awful lot Science doesn’t know about the human body.
  3. Sleep is precious. What I wouldn’t give for just one night of uninterrupted sleep.
  4. Bad genes trump healthy practices. Despite your best efforts to eat healthy, exercise, practice moderation in alcohol consumption, avoid smoking and drugs, etc., you can still get cancer. You still can.
  5. People who say, “Please let me know if there’s anything I can do,” really mean it. They just don’t know what you need. Tell them.
  6. Life may be shorter than you expect. I may not have another 30-40 years on this planet. I might only have 10-15. I might have even less. Stop taking time for granted.
  7. There is still time to eliminate regret. When I examine the life I’ve had, most of my regrets are outside my power to change. The things that are within my power, I’m working on now.
  8. Do what’s important, what you love, now. Now is really the only time you can count on.
  9. Stress reduces your body’s ability to fight and kill defective cells. Your job can kill you. Don’t let it.
  10. Even dying is an adventure.

Should You be Your Sibling’s Keeper? (4 Questions to Consider)

Thanks to everyone who responded to my last post. Your comments were really helpful! Based on what I learned, I’ve planned a series of posts geared toward siblings who care for brothers or sisters with mental illness. I’m calling it the Sib Series but I think there is something here for all of you.

When I decided to step into the role of caregiver for my sister, it was unquestionably my choice. I had tried to hold Jerri’s hand, long distance, through a number of crises, including more than one hospitalization to stabilize her meds. The last one had involved convincing her to check herself in, enlisting one of her friends to drive her to the facility, finding a kennel that would board Max with an open-ended reservation, tracking down Max’s vaccination records, and enlisting my father to transport him to the kennel. It was exhausting, impractical, and I felt like I was just sticking my finger in the dike.

I realized over a period of about 2 years that Jerri’s local mental health system was failing her. That she had virtually no local support network and it was extremely unlikely she could get better on her own. I’m a competent person and because I work in the pharmaceutical industry, I understand healthcare better than most. The mental health system where I live, while imperfect, is still light years ahead of the one she was dealing with and I have the drive and initiative to navigate it. Jerri needed help and I believed I could help her, but only if I committed fully to the task. So I made the choice and moved her here.

In essence I asked myself, “Should you be your sister’s keeper?” and I responded, “Yeah, I think I should.”

Many siblings in similar situations never actually consider this question. Why? Because they don’t realize or acknowledge there is, in fact, a choice. If you think caregiving for a sibling with mental illness is in your future, if your parents plan to pass the torch to you, or if you’ve already assumed that role, an important question to ask yourself is:

“What is my motivation for caregiving?”

At Sibnet on Facebook, someone recently asked, “How did you get to be the primary caregiver for your sib in your family?” (My paraphrase.) If you don’t know about Sibnet, it’s an online support and information community for adults with siblings who have special health, developmental or emotional needs such as serious mental illness, autism, cerebral palsy, and Down’s syndrome. The responses fell into the following categories:

  • “I’m the only sibling”
  • “I’m the eldest/nearest in age/closest relationally to the sibling”
  • “I’m the only female”
  • “I’m the one who lives the closest”
  • “I’m in the best financial position”
  • “I’m the responsible one” or “I’ve always been the co-parent”
  • “My other siblings didn’t want the responsibility” or “I’m the only one in the family who cares”
  • “My parents expected me to do it” or “There has always been an understanding that it would be me”

Reading the responses, it’s clear that many siblings didn’t choose the role so much as get nominated for it. The lot fell to them for a variety of reasons including geographic proximity, financial stability, compassion for the special needs sib, and position within the family. While all of these are valid factors to consider, only compassion and depth of relationship with the sib are motivators that will sustain you through the really hard parts of caregiving.

Compassion was a key driver for me. I’ve mentioned before that Jerri and I were estranged for well over a decade when we became involved in each others lives again. We were also not close as children. Jerri hated me and I was, at best, ambivalent toward her – so there really was no emotional attachment to speak of. Despite that, it was impossible for me to witness her circumstances and not feel compassion. She was alone, lonely, being preyed on by neighbors and so-called friends, in and out of sanity, delusional, and often paranoid. This is someone I’d shared my childhood with. If our situations had been reversed, I’d have wanted her to intervene for me.

On Sibnet, several responders indicated they’d always known they would be their sibling’s caregiver. Their parents expected them to do it and had prepared them for the responsibility most of their lives. The desire to please your parents is not a sustainable motivator when it comes to caring for a sibling with mental illness. Trust me on this. I’m the Trophydaughter, Queen of the Parent-Pleasers. In this case, “desire to please your parents” is a breeding ground for resentment that will set you against your other family members, damage the psyche of your special needs sibling, and destroy all your personal dreams. That is, if you’re human. There aren’t a lot of people who will tell you this, and in particular, your family members. Fortunately, you have me 🙂

The second question to ask yourself is:

“Am I really the person best-equipped for my sibling’s caregiving?”

Let’s face it. Even the best parents planning for the future of a child with mental illness ask the wrong question. They ask, “What’s going to happen to Sissy?” They are mostly focused on the basics – they want to know Sissy isn’t going to wind up homeless or incarcerated or worse, that she will take her meds, get proper nutrition, and not get into trouble. It makes sense, from their perspective, that one of their other children step in. But these are just the basics.

The goals of caring for a sibling with mental illness go far beyond that. The right question to ask is “What is the best possible life scenario for Sissy?” The answer to that is always recovery and independence. In the case of mental illness, the caregiver’s goal is to help the family member achieve the highest level of functioning possible, despite the self-defeating decisions, choices, and behaviors that result from the family member’s disorder.

You have to be a friend, You have to be a coach. You have to be a care coordinator, a researcher of community services, a health and social system navigator. You need the entrepreneurial spirit required to explore, learn, fail, and try again. You have to be an advocate. You will encounter stigma and prejudice even within the medical community and you’ll have to demand equal treatment and quality of care. You may have to be obnoxiously persistent. This is not a job for the meek or faint-hearted. You may need to overcome your own deeply ingrained perceptions of mental illness or political opinions about those who utilize social services. This is the job description. So be honest with yourself. Are you the best person for the job? Shouldn’t your sibling have the best?

“But Trophydaughter, you don’t get it. There is no one else – I have to do it. I’m the only sibling.” Fair enough. This leads to my third question.

“What would happen if my sibling with mental illness was an only child?”

If your sibling lives with your parents, this is actually a great question to ask them. And it’s a valid one. There is no guarantee you or your other “normal” siblings will outlive them.

Your parent’s may picture a future for your special needs sibling where she moves in with you and you care for her like a mother. But what if you weren’t in the picture? Would they ask another relative or family friend to provide care? Would they establish a Special Needs Trust to provide ongoing financial support? Would they be more proactive about helping your sibling obtain disability and Medicare benefits? You see, the truth is, you are not the only option for your sibling’s care. You are just the most convenient.

Many parents subconsciously foster their adult child’s dependence on them. There are a multitude of reasons why. They may feel guilty or somehow responsible for the mental illness. They may feel protective or embarrassed. They may truly believe the adult child can’t function independently. They may not want to live alone themselves and enjoy the sibling’s company.

I believe our ability to take care of ourselves is core to our emotional well-being. There have been times on this journey when Jerri really wanted to be dependent. She would have moved in with me in a skinny minute. But I never offered because it’s not best for her or for me. Now, she would tell you she doesn’t want to live with anyone. She values her freedom. She wants to live her own life. It’s a gift.

Which brings me to the last question:

“What am I UNWILLING to forfeit to care for my sibling?”

This is a boundary setting question. I, for example, am not willing to forfeit my marriage. That comes first for me. Stan and I discuss potential changes in Jerri’s care that impact us and we make decisions together. Forcing him to be involved in ways he doesn’t want to or making decisions independently that will affect him would damage our marriage.

There are siblings at Sibnet who are contemplating dropping out of college to help care for their sib. And parents who are encouraging them to do so. This is wrong on so many levels. How can you take care of a sibling with mental illness if can’t even take care of yourself? Unless Mom and Dad are leaving you a huge inheritance and you plan to live with them until they are gone, you need a job, a good job, so DON’T give up college.

Other siblings decide not to have children because it just seems too hard to raise a family AND care for their brother or sibling. Don’t give up your dreams. If you want a family, have one, and put that desire first.

You CAN be a caregiver without giving up your life. There are ways to be involved in your sibling’s care to a more manageable degree – without being the live-in, full-time, primary caregiver. You don’t have to go it alone. There are group homes and assisted living. There are social supports like Assertive Community Treatment Teams.

As a last resort and depending on your situation, if your sibling is truly unable to take care of herself or is a danger to herself or others, you can pursue a competency hearing. This can be extremely traumatic for everyone involved. Your sibling will likely feel betrayed. No one wants to be stripped of their independence. But if the court determines your sibling is incompetent and you don’t want guardianship, in many states, a social service agency will assume the role. To me this is a drastic measure but there are situations when it needs to be considered. If your sibling is physically abusive, for example.

As a sibling who has already taken the caregiving plunge, you can tell I’ve put some thought into this. Whether or not you choose to care for your adult sibling is exactly that – a CHOICE. Your choice and no one else’s. You choose. No matter what your parents tell you, you are not the only option your sibling has. You may not even be the BEST option your sibling has. Caregiving is not a job anyone should assume lightly.

Getting Back on Course

I’ve done some soul searching about the blog over the past few days. I’ve been asking myself, “Why did you start the blog to begin with? What was your intent?”

Honestly, I’m not sure at the time I’d completely thought it through. I’d just moved my sister who has bipolar disorder 100 miles across the state so I could help ensure she got the care and support she needed. I was learning a lot about mental illness, stigma, and the challenges of navigating our federal programs and the mental health care system. I was convinced she could be healthier but she was at a place where she just couldn’t do it on her own. I was making mistakes, recovering from them, trying one thing then another. It was a crazy, messed-up time. And in the midst of it all, I thought there must be others like me. There must be others who are trying to figure this out and maybe we can all help each other.

But then I started the blog and it seems more often than not my posts have been for my own benefit. A form of free therapy. You know, getting my thoughts organized, stepping back and trying to view what just occurred more objectively, trying to figure out what the hell happened in my family, getting things off my chest, and just generally recording the journey. Whether this has helped anyone else in the blogosphere, I don’t know.

I’ve thought a lot about the audience I’d like to serve through the blog. My desire is to build a network of followers who care for and about loved ones with mental illness. A number of you follow the blog because you know me or Jerri, you know what a big thing this journey has been for us, and you care. Thank you for that. It means a great deal. You offer a tremendous amount of support to me and I can’t imagine being on this journey without you.

Some of you follow because you have your own struggle with mental illness and my perspective as a family member helps you better understand your own family relationships and challenges. Many of you have your own blogs and are far more experienced at this than I am. Some of you have a huge following. You’ve got this blog thing figured out. I can so learn from you.

And some of you (although I think potentially only a small percentage) follow because, like me, you have a family member, a sibling or a child, who has a mental illness or another disability which affects your family in similar ways. You are actually the ones I theoretically started the blog for and I fear I haven’t delivered a lot of content of value to you.

These are purely my perceptions. They may or may not reflect reality so I’d like to hear from you. Tell me about yourself. What attracts you to the blog (if you are, in fact, attracted) and why do you continue to check in? If you don’t like to publicly comment – no biggee. You can email me at trophydaugher@nc.rr.com.

Over the next few weeks, I’m going to seriously contemplate the mission and vision of Trophydaughter. I plan to develop a mission statement to guide my posts moving forward.

When I started this venture, I had somewhat of a if-you-build-it-they-will-come mentality. Obviously, that’s not the case. After a year and a half of blogging I still have less than 100 followers. Not that this thing was ever about the numbers for me (despite the fact that us trophydaughters are prone to measuring ourselves 🙂 ) but I do want to make a difference so I’d like to increase my readership. I’m also concerned the audience I most want to reach isn’t that active in the blogosphere. Specifically, siblings. Thoughts on this, anyone?

You Are Only as Sick as Your Secrets

Years ago, I unexpectedly found myself responsible for a table of about 8 customers at an Advisory Board dinner. If you aren’t familiar with Ad Boards, they are exactly as they sound – a group of people brought together for the purpose of advising you. Ours usually lasted a day and a half and were typically held in 4 star hotels. Seems like this one was at a W. I’d been invited to the meeting to lead a discussion on some patient education materials my company had developed. Earlier in the day I’d done so and as we headed into the hotel ballroom for dinner, I was relieved my obligations were over. Or so I thought. No one bothered to mention until right before we sat down that oh, by the way, I would be the only one from my company at my table and it would be my great fortune to play the role of host. Yikes! My palms immediately began to sweat.

You see, I don’t have an affinity for small talk. Which is to say I pretty much suck at it. Small talk seems pointless. I mean, life is short. If you’re going to have a conversation, well then, have one. Why waste oxygen talking about the weather? Or the price of gas in Muskeegee? Sure, it’s polite to inquire about one’s job and the ages of one’s kids, but time is ticking, so why not get right down to the good stuff? Like one’s most embarrassing moment. Or the thing one prays one’s significant other never finds out. I’m just saying I’m not afraid to ask. Something to think about before you plop down beside me on an airplane and interrupt my novel.

So I wiped my sweaty hands on my dry clean only suit, heaped my plate at the buffet and made my way over to table 5 to play hostess for the evening. One by one, guests joined me; 2 doctors, 2 pharmacists, and 4 nurses, and after everyone was seated and the wine poured, I looked up from my baked chicken to discover all eyes on me. I put down my fork, wiped my mouth with my napkin and tried to say something introductory. Something small talk-ish. I opened my mouth fully intending to say, “Hi everyone. Glad you could all join us this evening. Shall we go around the table and introduce ourselves?” Truly. That was my plan. And then I’d ask, “What do you think about the meeting so far?” and scarf down my food while everyone else talked.

But that’s not what happened. Instead my brain hijacked my professional intentions and my mouth produced something very close to the following:

“So. None of us really know each other and we will likely never meet again. Feels like the perfect place to get that thing off your chest. You know, that thing you really don’t want anyone to know but you really need to tell.”

Eyes widened. Someone giggled. There was a decade-long pause during which I thought, you’ve really stepped in it this time, sister, and then a lady sitting next to me took a big ole swig of wine and said, “my son is turning himself into a pin cushion. He’s got 10 body piercings so far and he just did a nipple. I love him but I can’t hardly talk to him without laughing. He looks so ridiculous, you know?”

And then the floodgates opened.

It was freaking AWESOME. I don’t even remember what anyone said. Except for the mother of the pin cushion. It was just so great to open up the closet and expose all the skeletons. We laughed and groaned and commiserated. One of the doctors racked his brain for something to share. “I’m just too normal,” he shook his head glumly. “That’s OK. Somebody has too be.” And we all roared with laughter.

All of the other tables kept sneaking glances. They couldn’t get over how much fun we were having. Long after everyone else had gone up to their rooms, we were still sitting there, lingering. We didn’t want to leave. We started out strangers and we left there, well, still strangers but a little lighter, as if having tossed a heavy backpack overboard.

A wise friend recently said, “We are only as sick as our secrets.” I believe this, wholeheartedly. Which is why I don’t have secrets. Also because I’m just not good at keeping them and partly as a reaction to growing up in such a dysfunctional family. Putting up a good front was ingrained in me. What other people thought about our family was paramount. I kept all sorts of family secrets – I had to. It was expected. And you know how it made me feel? Ashamed. Damaged. Broken. Less than.

But after I decided to no longer keep those secrets, know how I felt? Empowered. Unencumbered. Lighter. Free.

As an adult I realize you can’t actually control what others think of you. You can try to hide the dark stuff but you will always live in fear of it surfacing. Of someone finding out. It’s actually easier to eradicate the dark stuff than to hide it. To just stop doing the things you’d be horrified if others knew about. But some of our dark stuff is out of our control – it’s not the things we have done but the things others have done to us that we’re ashamed of. We worry what others would think if they knew we were abused or our spouse cheated on us or we were bullied in school or we grew up in foster care. We feel this inexplicable need to protect the people who harmed us by keeping their secrets. We take on their secrets and make them our own. This is unhealthy for both us AND them.

This is the stuff I’ve lost tolerance for as I get older. You don’t want someone to know you’re an alcoholic? Then get sober, no matter what it takes. Don’t tell your child to cover for you. “Daddy’s a deacon at church and it would look bad if others knew he drank. Let’s just keep it in the family. OK?”

Nope. Not doing it. I wonder how many people in our lives would choose to eradicate their dark stuff if we refused to cover for them? Keeping their secret isn’t doing them a favor. It enables their sickness. It helps keep them sick.

Of course, refusing to keep the secret isn’t a walk in the park either. Whether it’s your personally owned secret or one foisted on you second hand, outing it will jeopardize relationships. Some people will judge you. Some people will likely walk away. But are those the kind of people you actually need in your life? I say, good riddance.