Wow. It’s been a stressful week–what with my Blackberry seizing (RIP) and the new iPhone (ordered via my company’s website since it’s a business account) on back order. I felt like Linus with my security blanket yanked out from under me. Although I’ve got to admit, it’s a bit of a relief to be inaccessible at times. Wonder if there’s a phone dependency support group?
I also submitted a work product into a company review process that I’ve never navigated before. I was told if I didn’t annotate it properly with references, it would get kicked out and I couldn’t resubmit for 20 more days. Which of course shoots project timelines all to hell.
The biggest stressor, however, is a mandatory 6 day work training that culminates on Wednesday with a fill-in-the-blank certification test (15 questions, 20 minutes, closed book) that my failure to pass may result in disciplinary action up to and including separation. A kinder, gentler way of saying “they’s gonna fire yo ass.” Did I mention there’s over 300 pages of study material? Using words like hypercorticism and urticaria? Really. Course if they do fire me, I won’t have to worry about the aforementioned project timelines. Who says I’m not an optimist?
So when Stan and I had lunch with Jerri on Sunday and she mentioned the deposit to her EBT account was on Tuesday and could I take her to get groceries at Walmart and while we were there, could we look at microwaves because that’s what she wants for her birthday, I, uh, snapped just a little. Okay, a lot. Ten minutes later at the end of a detailed rant on my life with stress that was enjoyed by at least three nearby tables in Maggiano’s, I agreed to take Jerri to Walmart Tuesday after work.
Despite my own stuff, I made time for Walmart, because in the game of rock-stress-starvation, starvation trumps stress every time. (I believe rock pounds stress and starvation eats rock but I’m a little fuzzy on the rules.)
An interesting adverse effect of converting from a Blackberry to an iPhone is you lose saved messages. Knowing this, I replayed them one last time before activating the iPhone which finally arrived after five difficult days of mobile abstinence. The messages were mostly from Jerri, one from a time when I was taking a hiatus from returning her calls because she was making me crazy. The details are hazy so I’ve probably suppressed them. Which means therapy is likely in my future. In that message, she asks me to take her to get groceries because she’d eaten the last bit of food she had, a box of macaroni and cheese, and it was the only meal she’d had that day.
Most of us could stand a day or two without food. Jerri, however, weighs about 89 pounds when she’s soaking wet. So the girl’s gotta eat.
I don’t know what it’s like to really be hungry. I mean, I’m hungry now but all I have to do is walk the 20 feet to my pantry and there’s a whole plethora of food substances to choose from. I don’t know what it’s like to look in my cabinet and see nothing, zilch, nada. To open my refrigerator to only cold air. To walk to the shelter in the freezing rain for a meal or simply go without. Jerri knows these things. I find it deeply disturbing.
Equally disturbing is the number of people in Durham who share the same plight. I used to be somewhat blind to poverty. I could pretend it wasn’t real by simply avoiding the poorer sections of town. The sections where Jerri now lives. I can’t avoid them anymore because I have to drive through them to see her. I can’t close my eyes to the teenage boy with 6 bags of groceries standing at the bus stop in the pouring rain. Or the man without a coat, lugging a pillowcase of dirty clothes half a mile to a rundown laundromat in the Hispanic district on Roxboro. What if I stopped and gave these folks a ride? But I’m driving around in a Lexus with an iPhone attached to my ear and I’m embarrassed, even ashamed, to have so much when they have so little. I make excuses as I drive past, warm and comfortable and dry. I tell myself it’s not safe to pick up strangers but as I surfed blogs at 4 am having given up all hope of embracing the inside of my eyelids, I was reminded that I am the greatest liar I will ever know.
I don’t know what to do with all this. Maybe take a hot bath and mull it over. So today’s blog doesn’t resolve–I hope you’re not too disappointed. You can blame it on stress-induced sleep deprivation. I know I sure will.
I’ve been re-reading a book I read some time ago, about 6 or 7 years back, called Blue Like Jazz by Donald Miller. When it comes to nonfiction, I really like personal essays and memoirs best. I have a special shelf on a bookcase reserved for my favorites. I was adding another book by Don called A Million Miles in a Thousand Years to that shelf recently and discovered Blue Like Jazz was gone. I vaguely remember loaning it to someone, but who? No idea. So I ordered another copy from Amazon and when it arrived, I thought, “it’s been a while, let’s see if it’s still good.”
It is still good but it strikes me differently somehow. There are chapters and paragraphs that resonate as if I’m reading them for the first time. It’s funny how some books are like that.
What I like about Don is his ability to write about faith and Christianity in honest, human terms. His thoughts are not religious; they are real life observations.
This time around, the chapter on how to really love other people is a standout for me. Don makes the observation that many of us use love like money. We withhold affirmation from people who do not agree with us and we lavishly finance the ones who do. We withhold love in an effort to get someone to be what we want them to be. If someone does something we disapprove of, we roll our eyes, talk about them behind their back, give them the cold shoulder, exclude them from get-togethers, ostracize them, put them down, and ignore them. We withhold love to change them. And this rarely ever works. Because when we behave like this, people feel judged, mistreated, and abused. Rather than being drawn to us and wanting to change, they are totally turned off.
This is the way, Jerri and I grew up. Love, in our family, was conditional. If we behaved in a way that reflected positively on our parents, if we made good grades, were polite, didn’t cause trouble, minded our manners, believed what our mother told us, didn’t argue, didn’t talk back, then we were accepted. If, however, we chose to be ourselves which sometimes meant disagreeing with our parents or calling someone out who was using us or not politely backing down when we were wronged—love was withheld in sometimes inexplicably ways.
For example, when I was 16, I took a job at McDonald’s. My dad bought a little Toyota truck for me to use and I needed gas money to drive it to school. I hated riding the bus and for years I’d bummed rides with various other kids. Now I wanted control over my own schedule. I wanted to participate in some after-school activities and the constant effort of organizing transportation was exhausting.
My mom didn’t want me to work at McDonald’s. To this day, I’m not sure why. When I took the job despite her disapproval, she said, “since you’re making your own money now, you can use it to buy your necessities–shampoo, toothpaste, tampons, make-up–I’m not going to buy that stuff for you any more.” This was not a parental decision to help me learn how to handle my own money. The job barely paid $20 a week after taxes. This was my Mom’s way of withholding love in order to make me behave the way she wanted me to.
Don makes the observation:
God has never withheld love to teach me a lesson.
For me, that’s mind-boggling. It’s not what I’m used to. And it got me thinking. I don’t want to be in relationships where I have to work vigilantly to earn approval for my very existence. I mean, really, does anyone?
No, I want to be embraced for my quirks, my talents, my eccentricities, my tempers, my moods, my insecurities, my dreams, my hopes, my heartbreaks, my me-ness. I want to be in relationships where the other person gets a kick out of who I am.
Likewise, I don’t want to be that person who loves with conditions. I don’t want to love Jerri only when she takes her medication or only when she pays her bills or only when she avoids negative influences or only when she is in her right mind. I want to love her because she is herself. Because she likes quirky second-hand coats and bright orange overalls. Because she’s a chocoholic. Because she gives her neighbor her last can of soup and is kind to the schizophrenic man at the bus stop. Because she can crochet snowflakes. Because she makes funny cards out of construction paper and colored pencils. Because after everything she has lived through, she still laughs.
Don said that after he repented from loving conditionally, he was set free to really love.
I didn’t have to discipline anybody, I didn’t have to judge anybody, I could treat everyone as though they were my best friend, as though they were rock stars or famous poets, as though they were amazing, and to me they became amazing . . .
I’ve been thinking a lot about guilt this week and, in particular, as it relates to a conversation with Jerri about our dad who was her only local support person when she lived in Winston-Salem. He was her money-manager, her occasional chauffeur, dog-sitter, and errand boy. She admits she took advantage. Dad felt guilty for not being more active in our lives as kids and Jerri used that to get him to do things for her even when it was inconvenient or inappropriate for her to ask. Early on in our renewed relationship, she assumed I also carried a hefty load of guilt. I denied it saying, “What do I have to feel guilty for? For believing Mom and Dad when they said you were an addict?”
The thing is I lied. I do feel guilty. For a lot of things. Dr. Safer discusses her own feelings of guilt in her book, The Normal One. In talking about her brother, Steven, she says,
The guilt I never felt also became unavoidable. He was the family scapegoat, and I colluded to keep him so. I cannot reverse the favoritism that was undeserved, nor the way it distorted both our lives and prevented any real trust or real love from developing between us.
This rings so true that when I first read it, it was like sticking my face into a Harry Potter-ish pensieve and viewing the silver, hair-like wisp of a memory that had been extracted from my own brain. The number one crime I feel guilty of is colluding with my parents to keep Jerri the scapegoat. In my own defense, it wasn’t a conscious decision, although there was a part of me that acknowledged as long as the heat was on Jerri, it was focused away from me. Growing up in our house, you were just glad NOT to be the focus. Unfortunately, I got so good at NOT being the focus, that even now when I want to be, I can’t seem to manage it.
I feel guilty about the favoritism our parents showed me. I did not seek it out. I didn’t even realize there was favoritism until long after I was an adult watching Mom apply the same methods to my nieces and nephews.
I feel guilty about Jerri’s living conditions. Her housing is modest but safe and comfortable. Still it’s in a bad often dangerous part of town. Her main mode of transportation is the bus system which is used primarily by the poor, people who are not just down on their luck, but often tough, street-wise predators who snack on people like Jerri. She is surrounded daily by those with complex and recalcitrant mental illness and has little exposure to mentally healthy people. She eats most of her meals at the nearby shelter which has an ongoing problem with bedbugs. On several occasions, she’s been violently attacked. Once, when walking home from the bus stop, she was hit in the head by a homeless man with schizophrenia because she asked him what he’d said–she thought he was talking to her and was just trying to treat him like a human being.
I felt guilty at work yesterday when I had to get off the phone with Jerri or miss the opportunity to grab lunch before the cafeteria closed. She’d just admitted she’d had nothing to eat all day and had already missed lunch at the shelter.
According to Dr. Safer, all siblings of “damaged” individuals experience guilt. When it comes to mental illness, I wager that it’s not just the siblings. I doubt anyone in the family escapes the guilt complex whether parent, sibling, or child. We all wonder if we might have some how done something to trigger the illness or at the very least, make it worse. We all know we have responded poorly and failed the one who is ill.
My friends and coworkers remind me on a regular basis of how much I do support her, but, frankly, it seems like too little too late. It falls way short of her actual needs. Just this week, a friend said, “what if you did all the things you think you ought to do – moved her into your own home, administered her meds every day, took care of her like she was your own child, paid for everything she needs – what if you dedicated your whole life to her and nothing changed? What if she continued to be just as sick, continued to get into just as many scrapes?”
My friend had a good point. Sometimes I forget that I’m not God. I can’t fix some things even if I throw my life at it. Dr. Safer makes this point:
There is a critical difference between assisting a damaged sibling and trying to undo accidents of fate and fortune you cannot help and did not cause. The former is brotherly or sisterly love and mature, if circumscribed, responsibility. The latter is compulsive self-sacrifice driven by the belief that you do not deserve your advantages. The one is sadly finite; the other never lets you go.
The word “circumscribed” is important. It means “to limit or confine.” When we are assisting with sisterly love and with mature responsibility, we recognize there are limits to what we can do. In fact, we define those limits. We feel sad about the limits but maintain them just the same. I’m trying to accept that I can’t undo the damage—all I can do is love Jerri the best I can. That is enough.
In September, Jerri stopped taking her medicine. She crawled deep inside a tight cocoon of depression and I didn’t hear from her for weeks. She’d had two major set-backs, learning her financial aid for school had been suspended (she’d not completed the necessary number of classes) and having her laptop (which she can’t afford to replace) ripped from her person and stolen at the bus station. Without financial aid, she couldn’t return to school. Without the laptop, she didn’t know how to occupy her time.
She also skipped paying her bills that month. To make matters worse, she signed up for a special cable deal that she couldn’t afford. In October, her cable bill was almost $200 and when she didn’t pay it, Time Warner turned off her service – phone, Internet, and cable.
Many of us who are trying to help our family members with mental illness know what it’s like to try to deal with the financial fallout of an episode. Privacy laws make it next to impossible to obtain information to help sort out the problem or to intervene on the family member’s behalf. In the case of Time Warner, I didn’t know Jerri was in trouble until November after she restarted her meds. (As an aside, I discovered she was off her meds by checking the monthly drug summary from her Medicare Part D plan which is mailed to my house. There were no fills in September.) By that point, Time Warner had already turned her online account information off so I couldn’t reconstruct the events that had led to the now almost $400 bill. Jerri’s recollection of what happened is hazy and sadly deplete of any hard facts. She is unsure of dates and has no receipts for cash payments made to the cable guy who allegedly came by on two separate occasions – for what, I’m not sure.
The point of this story is I was able to call Time Warner and get the information I need because Jerri had granted me durable power of attorney (POA). Having POA has been invaluable on a number of occasions. It allows me to do things on her behalf that she is either not in a current mental state to handle or is unable to handle logistically because, for example, she has no phone service, no bank card, or has lost the key to her mailbox. Recently I was able to obtain the title to her car which had originally been sent through the mail to an address where she no longer lived. It was still with the DMV and flagged as undeliverable. She needed the title to prove ownership after her car was confiscated by the police from a buyer who had reneged on payments. POA has also allowed me to take money from her bank account to pay rent and to file paperwork for a federally-funded emergency cell phone on her behalf.
What is a Durable Power of Attorney?
It’s a legal document by which your family member grants you the authority to make decisions on her behalf. The document enumerates the specific powers your family member is granting you. These can include the power to:
- purchase, sell, or deal with personal property
- manage banking transactions
- arbitrate legal claims
- pay for housing or other living expenses (I don’t mean out of your own pocket but on behalf of your family member. I have found that some government subsidized housing require someone other than the occupant to act as the payee.)
- contract for caregiver services
- collect social security or disability benefits
Your family member can pick and choose which powers to grant.
A power of attorney can be set up to go into effect immediately upon signature or not until a doctor certifies the family member is incapacitated. Jerri’s was set up to go into effect immediately. This required a great deal of trust on her part. The language in the document prevents me from profiting from any decision I might make on her behalf. But beyond that, Jerri had to feel secure that I would only make decisions with her best interests at heart and that I would always consult her first as long as she is in her right mind.
How to obtain Power of Attorney
- Your family member can create and download a state-specific POA form from any number of legal websites. I used legalzoom.com. If you create the document on your family member’s behalf, remember to fill in the blanks online from their perspective. Most websites charge for creation of the document but it is significantly less than what you’d pay an attorney. It’s currently about $35 at Legalzoom.
- Review the document with your family member while they are in their right mind.
- Your family member grants power of attorney by signing the document in the presence of a notary public. Some states may require additional witnesses. Legalzoom will tell you what’s required in your state.
- Some states require you to file the notarized POA with your county recorder’s office. North Carolina is one of them and we recorded the Power of Attorney with the Register of Deeds office. Since many counties make PDFs of recorded documents available online, this allows easy access for anyone you are dealing with who needs to see proof of POA.
- As long as she is mentally competent, your family member can revoke POA at any time. She has to do this in writing, signed in front of a notary. If the POA was filed at the county recorder’s office, the revocation must also be filed at the same place.
First and foremost, your family member has to be of “sound mind” to grant Power of Attorney. She must understand what she will be signing and what it does. She must sign by choice and not due to pressure. This can be a challenge for those with mental illness who struggle with stability.
Jerri has good days and bad days. When I first began talking to her about moving to Durham, I explained the power of attorney concept and why I felt it was important for her to grant it to me. On a good day, Jerri realizes how out of it she can be on a bad day. She acknowledged that she struggles to pay her bills on time. The day she signed the document was a bad day for her. She was slipping out of right-mindedness and experiencing paranoia. As we stood before the notary public, Jerri began to question why she was signing the power of attorney. At one point, the notary asked if she was being pressured to sign. It was extremely awkward and I had to remind myself that the notary doesn’t know me and was right to try and protect Jerri from a potentially unscrupulous relative. The question, fortunately, triggered something within her and she said, “No, I need to do this. My sister is helping me.”
Having POA does not make you financially obligated to pay your family member’s debts if she doesn’t have the money to do so. POA allows you to make decisions about use of her financial resources – it does not require you to commit your own on her behalf.
I’m sharing this information because sometimes I think the thing we lack the most as caregivers, advocates, and supporters of family members with mental illness is practical know-how. When we do figure out how to do something, we need to share the knowledge. What have you figured out that the rest of us need to know?