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.
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 email@example.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?
About ten years ago (gosh, really? Has it been that long?) I wrote a novel called Learning to Stay. It was never published. After about 7 agents rejected it, I, uh,
locked myself in the bathroom and cried for four days sort of gave up on it. So I have a fragile ego, sue me. (This was before self-publishing became in vogue or this little tale might have had a different, but equally unsatisfying, ending.)
Actually it was more than the rejections. I knew in my heart the book wasn’t ready and I didn’t want the first thing I ever published to be something I’d look back on with embarrassment, like my first real kiss or that time I was having breakfast with Stan’s family and simultaneously exposing myself where three buttons of my flannel nightgown had come undone.
So, where was I? Oh, right. The novel needed major revisions–somewhere along the line I lost control of it and what was supposed to be a secondary storyline hijacked my original plot. (Words can be so hard to corral, they are like wild beasts, well at least mine are, always going off on their own, traipsing off path, chasing down rabbit holes. See, there they go again.)
My original plot, in a nutshell:
When her husband develops OCD, Kali learns in puppy kindergarten everything she needs to know in order to save her marriage.
I really loved my storyline. I still do. If you’ve never been to puppy kindergarten, you should go. Like right now. Whether you have a dog or not. You learn all kinds of life skills in puppy kindergarten (a.k.a. obedience school) that not only work on your four-legged friends, but also your two-legged ones. My novel had everything: humor, gut-wrenching OCD drama, a spunky heroine, romance, and puppies. (And a secondary plot sucking the life out of the primary one, but then I digress.) So I hired a writing coach to help fix it.
Here’s what my writing coach said. “No one wants to read a book about mental illness.” And I’m not paraphrasing. Those were her exact words. And I paid her to tell me this. She also said “Nobody in this day and age cares whether a couple gets divorced” but it was the first thing she said that bugged me the most.
Fast forward to today. What are the romantic themes making the big bucks at the theaters? Vampires, zombies, and mental illness. I’m not kidding. Twilight, Warm Bodies, and Silver Linings Playbook. So pbttttttttttt to my writing coach. You couldn’t have been more wrong.
If you haven’t seen Silver Linings Playbook, I highly recommend it. Realistic to the point of making you uncomfortable–I kept squirming in my seat and glancing over at Stan to see how he was digesting it–there are explosive scenes in public places. Yep, been there and done that. There is bonding over medication history. There is refusal to take medications and delusional thinking. There’s the genetic link. There’s the awkward friend interactions and family who are out of their depth. There is the horrible out-of-character things one does when not in one’s right mind that the whole community remembers and keeps throwing in one’s face. I know I’m not really selling it here but I so appreciate the honesty of the movie. And you feel for these characters. It puts a human face on mental illness. These aren’t crazies. These are real people struggling with the cards they’ve been dealt, making a mess of it, and still finding, yes, a silver lining.
So I might just have to dust off my old novel and wrestle that secondary storyline to its knees. Maybe I was just ahead of my time.
Wuf! Woowoo woof!
That’s dog speak. Roughly translated, it means “Wake-up, wake-up, WAKE-UP.”
Okay, so it’s 10:48 am and maybe I should be up already, but I’m celebrating Sleep-in Saturday. Yeah, it’s a little holiday, I made up. Pretty awesome, right?
Max is looking at me from the end of the bed, tail wagging. He can’t get all up in my personal space because Ramsey is blocking his path to me. God bless her.
“Go away. Go lie down! It’s too early, Max.”
Max can tell time. “Woo wulf!”
I roll onto my stomach and he jumps on the bed. He nudges my neck and my ears trying to get to my face. Stan hollers, “GET DOWN!”
Back on the floor, Max positions himself next to the chest of drawers, rhythmically beating its side with his tail. Bam bam. Bam bam. Bam bam. When I look at him, he leans in closer, barely containing himself, and whines coaxingly.
Alright. I’m up.
I pull on my yoga pants and red parka and walk him out to the dock. Ramsey shuffles along behind. Somewhere in the brush, I hear Tucker bouncing around. Only Max is on a leash because Max can’t be trusted.
“I wish I could let you off leash, Max. Really, I do. I’d like to see you run around and play with Tucker. But I know you will bolt.”
I’m sitting on the built-in bench on the dock that reaches out into the marsh. Max sits beside me watching the egret across the water. He’s pretending to be well-behaved.
“I always come back,” Max says.
I glance at him, surprised by his command of the English language. Or perhaps, its me, and I can suddenly understand dog speak.
“You do, but why run? Don’t you like living with us? Don’t we take good care of you?”
“I LOVE living with you.” He says this both fiercely and matter-of-factly. “I have my own bed to sleep on. Two beds in different rooms. I have toys. I’ve never had toys. Ever. I love my toys. I love to toss them and catch them and make them squeal. I get food everyday, twice a day, and you never forget. Never, not once. You always put water out and refill my blue bowl when it gets empty. You clean my ears when they hurt and take me on walks. You hug me and pet me. And talk baby-talk. I like baby-talk. You rub my belly. You are my humans. I love my humans.”
He is quiet for a moment. “And there is the man. I LOVE the man.”
He is talking about Stan. You would just have to see them together to understand.
“You didn’t love him at first. Do you remember? You seemed . . . afraid of him. You would cower and keep your distance. As if someone, some other man, had hurt you in the past and you didn’t trust him.”
“There was a man like that. Once. I do not speak of him.”
He continues to look out across the water but his eyes are sad.
“Is he the one who gave you the lightning bolt? The tattoo on the inside of your right thigh?”
He is quiet. His ears perk as a fish leaps from the water. He doesn’t want to talk about it.
“You know when I saw it, I wanted to rename you Harry. You know, Harry Potter? Because of the lightning bolt?”
He does his best RCA dog impersonation. Note to self: dogs don’t get pop culture references. I change the subject.
“What about Jerri? You didn’t seem to recognize her at first but then you seemed happy to see her.”
“She is different now.”
“She is . . . tamer.”
“What do you mean, Max? How is she tamer?”
“She was . . . like a creature in the wild without a human to care for it. Hungry, scrounging for food, dirty, with claws, terrified. Muttering, always to itself. Crying out, unexpectedly. Not sleeping for days. Then sleeping without waking. Like an injured creature.”
“And what did you do, Max, when you lived with her?”
“When she was . . . lost, I lay beside her. I kept her warm. I sang to her. I brought her back.”
“But who cared for you, Max? How did you get by?”
“Mostly there was food in my bowl. I would save it. When it was gone, there was the bag in the closet. I could get into it. Or plates of food she had partially eaten on the floor. Sometimes there was no water in my bowl. But there was always water in the big white bowl where the baths happened. Sometimes I needed to go out and I would cry and I couldn’t bring her back. When my insides hurt from holding it, there was nothing else but to relieve myself on the brick wall. I was ashamed for defiling my den. It is shameful.”
“Max, I’m sorry. I’m so sorry.”
He turns and hoists himself up by his front legs to lick my face. Getting down, he places his head in my lap and closes his eyes as I smooth back his fur.
“I have known joy,” he says. “I have tracked the deer through the woods to their secret place. I have splashed in the cold creek and wallowed in the grass. I have rolled on the muddy hill. I have run full out with the wind in my ears. I have slept under the stars and in the warmth of the sun beam. I have been touched, and held, and snuggled. I have loved my humans. I have known love.”
“You’re a good dog, Max. No. A great one.
“I confess, I didn’t want to take you in at first. But how could I not? I’m sorry about your time with Jerri. She was sick and not in her right mind. You were good to her. i don’t know if she would have made it without you. But it’s your time now, Max. To be taken care of. To be loved. And I do love you, Max. Even when you disrespect Sleep-in Saturday.”
“I know,” he says. “Now, where’s my breakfast?”
The office for Caramore Community was not what I expected. Think non-profit, low budget, scuffed up, battered furnishings, cracked and sterile floor, walls badly in need of paint. Instead, the office appeared interior-decorated. There were two large seating areas with comfy chairs surrounding over-sized square coffee tables. The walls were painted a warm caramel with matching plush carpet. Magazines and plants were scattered about. The receptionist desk was a long white affair that stretched across the length of the room. We were greeted promptly by Samantha who quickly found Jerri’s appointment and brought her coffee.
After a short wait, Jacob, the admissions director, greeted us and escorted us back to his office. He stepped out to get a copy of Jerri’s application giving us a chance to check out his digs. On the wall behind his desk was a portrait of someone who might have been Andrew Jackson. It was hung upside down. To the right was a credenza stacked about a foot high with piles of paper. Above this hung 8 to 10 apple green paper plates as if they were china. Above these, a bathroom scale had been hung and it took me a minute to realize it wasn’t a clock. On the opposite wall, a tree branch reached into the room, it’s base framed with an ornate white frame. Interesting!
Jacob, himself, was soft-spoken but exuded a sense of purpose and authority. He began the interview by saying this was an opportunity for us to learn about Caramore and for him to learn about Jerri. They are very protective about their community. They have limited space and receive hundreds of applications a year. They only have space for 30 individuals in their residential program and there is a 4 to 6 month wait-list. They only accept individuals who are not a threat to the community – you must be stable on medications, no history of violence, clean/sober for 6 months, ready and willing to work. He told Jerri that he would request records from Telecare and it was important that what she shared with him aligned with Telecare’s records. It was important for her to be completely honest with him because dishonesty was a warning flag and would raise concerns about allowing her into the program.
He asked if she wanted me present during the interview or if she would be more comfortable if I waited outside.
“My sister can stay. She knows everything about me so there’s no reason for her not to,” Jerri replied.
He asked about her diagnosis and how she was first diagnosed. Listening to Jerri tell her story was hard – it brought back a lot of difficult memories and all the emotions I’d felt at the time washed over me again. I don’t remember some things exactly the same way Jerri does, but I have a lot of gaps in my memory – things I imagine I’ve blocked because they are just too painful. Jerri talked about repeatedly running away and our parents checking her into Mandala, a private hospital, when she was 15. One of Mom’s friends had a daughter, Connie, who had “acted out” like Jerri and Mandala had helped her. Mandala diagnosed Jerri as having mental illness – the actual diagnosis is unclear – but my parents never accepted the diagnosis. She did not get medication or counseling.
After that she started using drugs and skipping classes with a 38 year old woman who hung out at the high school, buying drugs and alcohol for the kids, and taking them home. Debbie sexually molested Jerri – at the time Jerri thought herself in a relationship with Debbie. She believed she was discovering her true sexual orientation was lesbian. But as an adult, Jerri recognizes Debbie was a predator. Jerri was so desperate for attention and affection, she was willing to go along with Debbie in order to feel loved.
Jacob then delved more into the substance abuse. “When was the last time you used?”
“Four months ago,” she said and explained the situation.
“If that is true, and I have no reason not to believe you, then you don’t mind doing a drug test today, right?”
Silence. Jerri looked at Jacob and said nothing for what seemed like eternity. Her hesitation was a dead give-away. Finally she spoke. “You’ll find crack in my system. I smoked it yesterday.”
Ayyyyyyyyyyyyyyyyy! I could just strangle her. Why would she do something so STUPID? She knew Caramore required 6 months of sobriety to get in. She read it on the website and even talked to me about it beforehand. Did she really not want in the program? Was this some twisted passive-aggressive way to get them not to accept her? Was she purposely sabotaging herself?
Jacob closed his folder and said, “I’m going to end the interview now. If I continue the interview it’s not going to go well with you and could prevent you from ever getting into our program. I’m going to reschedule the interview for 3 months and you will need to provide evidence of 3 months sobriety in order for the interview to occur. It concerns me greatly that when I asked when you last used you said 4 months ago which was not the truth. The truth is you used yesterday. Maybe you lied because you want into the program so badly. But if that is the case, the way in is through sobriety. This development delays when you could be considered for the program. If you are serious about changing your life, I’ll see you again in January. There are some people I’ve worked with for years to get them ready for the program. This is not a ‘no’. It’s a ‘you are not ready.'”
I could learn a lot from this man.
He refused to accept any of Jerri’s excuses. She said, “I don’t crave drugs any more. I wouldn’t use if people weren’t knocking on my door offering it to me for free.”
Jacob’s response: “No one held you down, forced the pipe in your mouth and made you inhale. Even when they bring it to your door, you have to take responsibility and say no. Even in Carrboro, crack is available. It will always be accessible no matter where you live. You can’t use that as an excuse. You are lying to yourself when you say ‘I wouldn’t use if I lived somewhere else.'”
As you might imagine, the drive home was a bit strained. Jerri couldn’t explain why she’d done it. I could feel myself disassociating.
“Here’s the thing, Jerri,” I said. “If you really aren’t interested in Caramore, you should have just said so. I took half a day off from work for this interview, and believe me, come January, I will not do it again if you use at all between now and then. What you did was inconsiderate of everyone – you, Jacob, and me.”
“I knew I’d made a big mistake the minute I did it. I don’t know why I did it. I was just so surprised when he handed me the pipe. I didn’t know how to respond so I just took it.”
“Jerri, the way your life is now is the way it will always be unless you choose to change it. That is if you’re lucky because right now you are dependent on the government and they could pull funding at any moment making your life even more challenging. You need to be dependent on you. You need to make a choice – do you want simply to exist? Or do you want to live? No one can make that choice for you. Only YOU can prevent forest fires.”
That’s right. Everything I ever needed to know about personal accountability, I learned from Smokey the Bear.
Many of the bad things that happen in our lives are a direct consequence of choices we make. I’m not saying that we are responsible for EVERY bad thing that happens. Bad things happen all the time to good people out of no fault of their own. Last time I checked, 100% of us can expect to experience something devastating in our lifetime. The untimely death of a loved one. Debilitating illness. Estrangement. Divorce. Bankruptcy. Down-sizing. A crime against us. Abuse. We live in a broken world and no matter how good we are, how religious, how smart or careful or risk-adverse, there is no magic formula. Bad things happen, period.
But some bad things are avoidable. If I make my car payment, my car will not be repossessed, for example. I won’t lose my job because I don’t have transportation to get there. Smokey teaches me that if I don’t light a match and throw it into the woods, I won’t start a fire that may eventually consume me.
“If God wants me to get into Caramore then He will make it happen,” Jerri said.
Really? Because I don’t think so. God forgives but I can’t think of a single time that he supernaturally revoked the consequences of someone’s bad choices. He’s not going to, for example, plant the notion in Jacob’s head to rescind the sobriety requirement just for Jerri.
So the visit to Caramore did not go as planned. Jerri continues to talk about the program as something she wants to do. We’ll just have to see how the next three months unfold.
My sister is legally blind. Without glasses or contacts, Jerri can’t read a page held an inch from her nose. If you point at an object 20 feet away, she can’t tell you if it’s a bush or a Clinton. For that matter, she can’t even tell you’re pointing. You’d have to take her chin in hand and point her face in Hilary’s direction. Even then she might mistake her for a Juniper.
She’s been wearing the contact in her left eye for 4 months. The same lens for 4 months. A lens that is supposed to be discarded and replaced every 2 weeks. She doesn’t have any glasses. Her frames broke quite some time ago. She still has the lenses and when she’s really desperate, she tapes them on to the frames of her sunglasses.
Jerri hasn’t seen an ophthalmologist in two years. Despite the fact that at her last visit, she was diagnosed with glaucoma. She doesn’t use the drops that were prescribed because you can’t use them with contacts.
Now that she’s in her right mind, Jerri is trying to take better care of her eyes. She knows she needs to treat the glaucoma which means she needs glasses. But when you’re as near-sighted as she is, a basic pair of no-frills glasses costs about $300. Medicare and Medicaid do not cover this.
Completely on her own, Jerri researched potential venues for financial help. She contacted the Department of Social Services and was able to obtain a voucher for eye glasses from the NC Division of Services for the Blind. But she had to have an eye exam to get a prescription. In NC, Medicaid used to cover routine eye exams for adults but not any longer thanks to legislation (House Bill 200, Section 10.37.(a)) effective October 1, 2011. Fortunately, and who’d have ever thought I’d be making a statement like this, Jerri has glaucoma. If you have a medical eye condition, Medicaid will still pay for the exam.
So I talked to my ophthalmologist, Dr. Jill Bryant, about Jerri, her disability, and her financial situation and Dr. Bryant agreed to see her. (Not every doctor will you know, given Medicaid is her insurance for eye care.) Not only did Dr. Bryant give Jerri a complete and thorough exam but she treated her with dignity and respect. From the minute we walked into the office, everyone, from the office manager to the eye technician, looked her in the eye, appropriately directed their questions to her (not to me), and were transparent about what Medicaid would and would not pay. For example, contacts are considered to be cosmetic so Medicaid does not cover contact lens fitting but Jerri really wanted a contact lens prescription in addition to one for glasses. That part of the visit was $80 typically payable same day. The office manager told us to stop by after the exam to discuss a payment plan. Dr. Bryant, knowing Jerri’s situation, reduced the cost of the lens fitting to $55. But when we spoke with the office manager, she just waved her hand and said not to worry about it! Dr. Bryant also filled a bag with saline solution and glaucoma medication samples.
I left Dr. Bryant’s office with two thoughts competing for attention. One – what a beautiful gift Dr. Bryant had given Jerri by simply treating her like a human being. And two – what in the world will Jerri and others like her do when Medicaid crashes and burns?
It’s virtually impossible this close to November not to be concerned about Medicaid. No worries, I’m not going to go all political on you. Frankly, I don’t think either candidate has a good plan for this one. Medicaid is broken. It has been for years.
Medicaid is a jointly funded cooperative venture of the federal government and state governments to assist the states in providing medical care to people in need. Because the federal government contributes funding, it also regulates how it is appropriated. For example, the federal government legislates who is eligible for Medicaid. States cannot limit enrollment to manage costs. The primary means that States have to manage Medicaid costs is to reduce the amount of payment for services to doctors. So every year, most States cut this payment. Because of this, Medicaid pays physicians way below the market rates to care for Medicaid patients. In 2008 (when this was last measured), according to the Centers for Medicare and Medicaid Services (CMS), Medicaid paid physicians approximately 58% of what private insurers paid for comparable services. Low payment, the excessive paperwork required to file for Medicaid reimbursements, and the amount of time it takes CMS to pay are all reasons why many physicians choose not to see Medicaid patients.
When physicians do see Medicaid patients, the care they provide is often substandard resulting in poorer outcomes. One study in the Annals of Surgery examined outcomes for 893,658 individuals undergoing major surgical operations from 2003 to 2007. [LaPar DJ et al., Primary payer status affects mortality for major surgical operations. Annals of Surgery. 2010 Sep; 252(3): 544–51.]
In summary: Medicaid patients were almost twice as likely to die as those with private insurance; their hospital stays were 42 percent longer and cost 26 percent more. Compared with those without health insurance, Medicaid patients were 13 percent more likely to die, stayed in the hospital for 50 percent longer, and cost 20 percent more.
It only took a couple of doctor visits with Jerri for me to see that she gets fewer tests and referrals than I do with my private insurance and we see the same doctor.
In 2009, there were over 50 million Americans with Medicaid. Currently, Medicaid provides health care coverage to low-income families with dependent children, pregnant women, children, and aged, blind and disabled individuals.You may be aware that one provision of the Affordable Care Act ( aka Obamacare) expands Medicaid coverage in 2014 to low income individuals without dependent children, an additional estimated 17 million people. Add that to the people already receiving Medicaid and that’s over 20% of Americans. That’s a lot of people!
Perhaps you see my concern. In a system where it’s already difficult to find a doc who accepts Medicaid, how will these people get care? What additional services (like eye exams) will have to be cut to keep the program solvent?
It’s disturbing that so many people are so poor. I struggle sometimes with “entitlement” programs. I’ve met people who are working the system. At the beach, I have a neighbor who’s a veteran. He broke his back in Basic training before active duty and was honorably discharged. He had a number of surgeries and appears completely healed. He kayaks, cycles, runs and lifts weights. But he chooses not to work. He’s living on VA benefits and disability.
To me, that’s wrong. He might not be able to serve in the military but he CAN work. He chooses not too.
But I also know many people with mental illness who would be on the streets without these programs. For example, Jerri and her neighbor with schizophrenia, Catherine, who is in the hospital again because her medications aren’t working. There will always be poor people, legitimately poor people, and we need a way to take care of them. I hate that this responsibility falls to our government, but the practical side of me acknowledges if the government doesn’t do it, no one will. Sadly, I’m not sure either candidate has a friend or family member who is legitimately poor. I think that’s a basic requirement to even understand the problem.