A month of Mondays

It's Sunday night. Tomorrow I will be on call and I anticipate getting called out early. Call me cynical, but I've worked many a weekend on the unit and through the fault of understaffing or weekend apathy, many a braindead patient has gone unnoticed(Sorry 'bout the run on sentence). Monday morning and the head nurses will burst onto the scene, take a census report and demand to know what's going to happen with the grim, head-injured patient in 20 or the stroke in 14. Then I'll be called in to evaluate them. Last month was a little slow, so I guess I shouldn't complain, but I hate Mondays.

What's wrong with Auntie?

I pondered for a few days about what to write for Blogging Against Disablism Day. As a nurse, I've taken care of many people with disabilites, from children with chromosome abnormalities to elders who've had strokes. I couldn't think of anything. So I asked Love Monkey. No help there. Finally, Dear Kid said, "What about Auntie?" How dense could I be? I'd forgotten my own family member and her struggles being differently-abled, which only shows how marginalized people like her are.

I was probably 7 or 8 when I realized Auntie was "different". I might have noticed a little earlier, but she didn't live close by, and really you could know her for a while and not realize it or just think she was a little "off". Finally, one day I asked my older sister, "What's the matter with Auntie?" "She's retarded!" Just the way my sister replied made me feel like it was shameful to even ask.

Those who qualify such things say she is "high functioning." I know that she writes her letters neatly in the blanks of the crossword but they don't spell anything. She looks through the paper but doesn't read it. When my grandfather drives, she tells him what street to turn down and she remembers everyone's name-even people she hasn't seen in a long time. She was born in the early 1940's, the only one of her siblings born in a hospital. Something happened during birth and she was deprived of oxygen and had brain damage. So she doesn't "look retarded." If she was born today, she'd probably be in special education classes and maybe mainstreamed. She might even hold a job and live independantly or semi-independantly. But she was the product of another time and a dysfunctional family. She was advanced through Catholic school for several years and then just stayed home. Nobody talked about it.

I probably wouldn't even think about it much except that Auntie came to live with us when I was 19. At the time I was horrified. Something in those two words my sister said years before shattered my child's love and made me ashamed of her. My teenaged selfishness thought it was a terrible imposition, even though it really didn't change my life at all. I left home that year and again, it wasn't something that really registered on my radar except for visits home. Then, all I could think about was how she bugged me. Like the weird way she had of moving her mouth when she listened to you and how she was always twitching and moving. Nobody then realized she had Tourette's Syndrome. Then I would leave and not really think of her again until the next visit. My parent's were having difficulty adjusting to Auntie in their home, but that was their problem, not mine.

Somewhere in my 20's I started to change. Somewhere between having a child, becoming a nurse and going through several difficult years as a single parent I started to have more compassion in general and more feeling for Auntie's situation. Maybe it was when Dear Kid asked me the same question I had asked my sister years before, "What's wrong with Auntie?" Being less blunt I explained a little bit about how and why she was the way she was. Dear Kid loved her. One of my favorite pictures is of Dear Kid and Auntie walking away from the camera down a path framed with Autumn trees turning gold. DK never felt shame about her Auntie and I learned that if you teach a child with truth and compassion they respond with nonchalance. Auntie was different from DK in the same way that some people have different skin or hair color. Interesting, but it didn't change their love for each other.

By now, the stress of taking care of Auntie was taking a toll on my parents. My mother in particular would snap at her for little or no reason. Auntie was like having a perpetual 9 year old on your hands. You always needed to remind her to wash or brush her teeth or put on clean undies. Mom either couldn't or wouldn't remember that or maybe she was just mad that she had raised us all and now was raising one who would never grow up and leave home. Fortunately, they were put in touch with someone from Social Services and found out about a day program. Auntie, after some initial fear, really seemed to like it. They also had overnight programs, where they went to the movies and stayed in a hotel and went swimming and such. My parents are also entititled to three weeks a year of caregiver respite. Sometimes these go fine, but one time Auntie came home crying. They had roomed her with someone who wasn't "high functioning," someone, in fact, who needed help with feeding and their diapers changed. It really scared her, I think because she knew this could have been her. For the first time I really, truly understood that Auntie was a person, not just my "different" aunt. Not just a brain damaged, Tourette's twitching diagnosis but a person. Not the shameful, family secret but a person and my aunt.

She is responsible for my seeing patients in a different way. For not having conversations about who's sleeping with who over the confused patient during the bedbath. For not talking loudly to the blind person or condescendingly to the old. For not assuming anything about the differently-abled. I started having conversations with Auntie, asking her about things. I'm embarrassed even to tell you that it took me this long. She's never asked for anything. She's spent her life dependant on others to look after her. If she outlives my parents, my sister and I will be her guardians. She loves babies and chocolates. Despite her small stature, she gives bone-crushing hugs. She still bings around from place to place with her crazy, frantic energy. And there's nothing wrong with her.

What do we owe?

"The single most important thing to know about Americans -- the attitude which truly distinguishes them from the British, and explains much superficially odd behavior -- is that Americans believe that death is optional."
Jane Walmsley

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Some of you may have been following the comments from this post. I made a reply, but I still had something Sailorman said on my mind (I'm not picking on you, Sailorman, I swear). He said that the dead owe nothing to the living. Which got me thinking about personal responsibility. What do we owe other people:our families, our children, strangers, other residents of our nation or the world. Do we intervene when we see someone getting beat up? Do we stop at an accident? Do we intervene if we think the neighbors are molesting their kids? Do we keep the world clean for future generations even if it means we drive less or give up something we really like(I don't know, pick something)?

I feel like I'm rambling. Do the dead owe the living anything? The thought has brought out the existentialist in me. The Talmud says, "he who saves one life, saves the world entire." When a family has to make a decision to donate, do they owe the potential recipient anything? I'm not talking about laws or presumed consent. I'm talking about morally. When it comes to donation, though, I don't think it's about what the dead owe the living, but about what the living owe the living. If given the opportunity to save someone's life, would you do so? What if it was conditionally? One commenter said she would only donate for a family memberif she could know who the recipient was, that it was her right and if the recipient didn't go for it, they didn't have to accept the organ. But when a house is on fire, do you say to the people trapped inside, well, I'll rescue you if you promise to come clean my house. They're in no position to say no. One guy I know recently found out he had received a new heart after being in a coma. He couldn't agree to anything. People waiting for organs are desperate and sometimes have only days or hours to live. So is it morally right to place a restriction on the gift of life?

This whole line of thinking led me to think about dead people. Now I have personally done post-mortem care on dozens of people. I've cleaned blood and various other body fluids from them, redressed them in clean gowns and generally made them presentable to be seen by their families. One of the big concerns families have is having their family member "cut up". But when you've actually touched a dead person, you see that this is just the shell we live in. Our bodies are just a suit of clothes that we wear and when we die, no matter what you believe happens next, we take off that suit and move on. It's fitting to act with respect and reverence, but it's still just your shell. I think everyone should do post-mortem care at least once. Like it used to be done(and still is, in some parts of the world), when a dead person was layed out in the parlor for the wake.

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On Monday, I'll be participating in Blogging Against Disablism Day.

Check out the above link for more info.

Grand Rounds!!

Head on over to this week's Grand Rounds at the Health Business Blog. And check out the comments in my last post. I hope to get a lively discussion going.

Organ Donor Awareness Month

April is Organ Donor Awareness Month. You critical care nurses out there may have already seen this month's Critical Care Nurse magazine, but if you haven't, it's devoted to organ donation and it's very, very good. Check it out.

One of the discussions I've had recently is how to increase donation rates(well, not just me but the whole HRSA Collaborative.) Our neighbors to the north(Canada, for those of you who are geographically-challenged), are considering the possibility of presumed consent. This is where an individual would have to "opt-out" of being a donor on a national list or else, in the event of brain death, would be presumed to be a donor. Spain, which has the highest organ donation rate in the world uses a system of hospital-based transplant coordinators. Here in the U.S., consent must be obtained from the next of kin-who have to make this decision while their loved one is still on a ventilator, at or near brain death. Not an ideal time for a well thought out, informed consent. Many states have enacted laws for first-person consent. This means that if you document that you want to be an organ donor-on you driver's license or on a registry-it is considered informed consent and your next of kin's permission is not needed. Where I come from this has not been challenged. Most families want to honor the deceased's wishes and will agree to donation when they realize that's what they want.

Another, more controversial idea is that only people who sign up to be organ donors should get organs. I'm interested in hearing opinions on this. Should someone who wouldn't donate their organs receive one? What if they changed their minds? Something needs to change. Waiting lists are growing as technology keeps potential recipients alive. Today, 18 people will die waiting for an organ. It's an uneasy thing to consider theoretically. Now think about how you would feel if it was your spouse, your child, your parent who was brain dead. Would you donate? Recently I asked a mother of a teenager who died suddenly if she would donate her daughter's organs. She said she knew it was a good thing and she wanted to help other parents who were waiting for an organ to save their kids lives-but she couldn't see her baby "cut up". Who can blame her? This is the last decision she will ever make for her.

I personally don't care what you do with me when I die. Cut me up and bury the rest by the pound. I won't need it anymore. Let my eyes help someone see their children or a sunset. Let my skin be used for grafts for burn patients. Let my heart, lungs and liver go to someone who doesn't know from one day to the next if it's their last or their first-with a life saving organ. My kidneys, pancreas and intestines can go to someone with a debilitating disease. Take every bit of it. If you feel that way too, tell your family, write it in your living will, put it on your driver's license and tell your family again. Over 90,000 people are counting on you.

I haven't posted since March!?

I'm tired. Very, very tired. It's been a busy month. Ended by a long week at work-I had a donor who was a baby, killed in house fire with mom. I DO NOT want to talk about it.

I will say this, though. You should never jump to conclusions. The intensivist told me afterwards that she was taken aback by how heartless the recovering surgeon was. She wanted to hate him. I told her that she didn't see him in the OR when he asked me what the baby's name was as he made the first incision. I told him and he said "S____, I'm so sorry. I so, so sorry." He has kids, too, and he didn't want to do this but we had no one else.

There are two things about this job. One good thing is, it makes me so grateful for the things I have-my health, my family. I try to live every day like I may never see them again. The one bad thing is-I live like I may never see them again. It scares the bejesus out of me. I think of all the bad things that could happen to my Laughing Baby or my older, Dear Kid. It drives me nuts. I want to encase them in bubble wrap whenever they go out of the house.

I remember a bad week I had many years ago when I did trauma. In one week I took care of a teenager who hanged himself, a young girl killed in a head-on collision and a new father who had pulled over to the shoulder when his car broke down and was rear-ended by another driver who had passed out from being sick at 70 mph. He had taken off his seatbelt while he was waiting for the tow truck and killed. I had to talk to his wife, the mother of his 4 month old baby. Then I had to return to the ER where the driver that killed him was being treated.

That was it for me...I did something I had never done before. I sought out the priest from pastoral care. Father was a great guy. I told him how upset all this had made me and then how I was worried I'd run into the guy that did it as my next patient. He said, "I understand. I spent a long time with the family of the man who died and it was very draining on me too. Then I wanted to know if I'd have to minister to the other man as well, but I looked him up in the computer, and thank God, he's Protestant!" *

Which leads me to the third thing about this job:you need a wicked sense of humor.

* I cross-my-heart-and-hope-to-die swear that that is exactly what he said! I loved that priest.