Hard to bear

I’ve been doing pediatric hospice visits this last week.  I knew, as a mother, this would be more difficult than the adult hospice population.  Each newborn I’ve seen with chromosomal abnormalities so life altering, that they won’t survive past a year of age, have pulled at my heart as I imagine what the parents must be feeling, struggling each day.  What has surprised me this week, is not the tough medical conditions, or my own emotions as I relate to being a parent, but it’s the social situations that have caught me off guard.

It seems that each child has come from strained social circumstances as well.  Little Marcus is 8 months old now, but has a rare disorder with his brain. Instead of splitting into two halves, only one large brain formed.  This causes serious mental problems: he can’t coordinate swallowing, so is fed by a tube in his stomach, he has problems breathing and needs oxygen, he is blind and probably deaf, and has seizures everyday of his life.  His mom is just 18, pregnant in her last year of high school, she wasn’t prepared for this form of mother hood.   Her boyfriend has stepped up and is helping out, but they weren’t planning on marrying, or being together after high school.  Life looks so much different now. 

Jamie is only 2 weeks old, born with a similar problem as Marcus, but worse.  She also didn’t form a nose, so there’s a gap from her nose buds to the mouth, a very severe cleft palate.  She also has all the problems Marcus has.  Her young parents had dropped out of high school and were newly dating.  They were shocked when they became pregnant, and even more when they learned of all of jamie’s disabilities.  When I visited this young family they were living with friends.  The tiny apartment housed 2 families, 3 boys ages 2, 2 ½ and 3 and now Jamie and her parents.  It was chaotic as the 3 boys ran around asking about the feeding tubes in jamie’s belly and why there was a whole in her face. No one in the entire apartment was older than 20. 

More than coping with taking care of a child with such complex medical needs, I wonder how the experience of the children dying will affect them.  Each of these children will likely not make it to a year of age.  To be 16 and mom is hard, to be 16 and have to watch your child seize 3-4 times a day, up to 2 hours each time seems unbearable, but then to be 16 and live through bonding and loving that baby and watching them die in a year, seems almost a breaking point.

The key incident

Before embarking on Friday’s home visit’s I reviewed the info I had on each patient.  The first home I was to visit had a note from the nurses on it: “Patient share’s duplex with drug dealers, always take security with you if going after dark”.   I was going in the day, but it did make me a little more cautious as I made my drive. 

As luck would have it, in my nervousness to hide my computer, iPod, etc in my car when I arrived at the patient’s house, I jumped out and habitually pressed lock on the car door and saw my keys still sitting in the console.

My heart sank.  Of all places to get locked out of my car, I’m in some dangerous crime filled neighborhood!  There was nothing more to do just looking into my car, full of regrets, so I made my way to my patient’s half of the duplex.   

As I knocked I had the thought- had I left all my valuables in plane sight, maybe someone would try to break in, and then I’d get my keys!! 

I met my patient for the first time, in one breath introducing my self and lamenting about my car key situation.  She’s a young woman, 48, with colon cancer who’s husband died last February of the same disease.  She has a 9 year old and a 30 year old, but no kids in between.

Although tired, and in bed, she immediately went to work on my problem.  I tried to dissuade her to not worry, that I was there to see her, but she wouldn’t have it. She began calling her landlord and neighbors.  “I’m sure one of these young men around here can break into your car” she muttered.  I’d hear her ask for so and so’s son, then take ownership as if it was her car,  “Dewon, I locked my keys in my car, you think you can come get them out?”  They’d talk a bit, but everyone probably saw my car parked outside and declined to come try.

Later, my husband agreed to get off work and come and unlock it.   I ended up spending  2 1/2 hours with this patient.  We didn’t discuss anything too profound; I tried practicing what I’ve heard of as the ministry of presence.  Not wanting to exhaust her, I’d often remain silent, letting her rest.  Then we’d talk for a little bit about her life.

In those silent moments I thought a lot about my key incident.  I know that had I not been so nervous I wouldn’t have made the mistake. I’d now spent an afternoon here, and was embarrassed at myself for the prejudices I had when I had pulled up into this neighborhood. 

When I left, we hugged as friends, and I was glad the day had turned out as it did.

Tension

I had a hour long drive to go visit a new home hospice patient.  She lives with her family in a very small town. I passed many farm fields covered with ice and snow to get to the town.  I found her street and recognized her home easily. I had already heard that this little town had surprised she and her family by building them a new home.

Jackie was diagnosed with lymphoma last year, and has had the most aggressive therapy available for this aggressive form. She and her husband had bought an old farm house and were in the process of fixing it up when she was diagnosed.  While gone for 3 months, away from her kids, getting a bone marrow transplant, the town had volunteered and built a magnificent home.

I walked up to the front, passing bikes strewn in the snow and rubber balls hidden behind bushes. I felt myself growing sad just walking to the door.

Jackie is my age, with 5 children, ages 2 1/2 up to 12.  MY AGE and dying.

Jackie's husband welcomed me in, to more Christmas chaos with decorations and wrapping paper around.  Jackie was able to walk out to greet me for just a few minutes before retiring to bed from exhaustion and nausea.  Her hair short, having just started to grow back after chemo. Face thin, having lost 50 lbs.

It was a hard visit. For the first time, I sensed tremendous distrust in me as a young hospice physician. Perhaps it was anger on her part at my life, or just the weariness of fighting so hard to beat something impossible to beat.  Regardless, there was a lot of tension in that house.

It's so different when I work with young patients vs. older one's. Young patients often keep hoping for miracles. Comments her husband made led me to believe that they both are still expecting she'll be cured, even with all medicines now stopped.  There's often more escapism in young people as well.  When it gets so hard to face the reality of being a mother of 5 and dying, it becomes easier to take medicines to go to sleep.  She's avoiding the pain, with drugs, but meanwhile loosing the precious time she has left with her family living.

Usually I leave visits feeling good, but not this day.  Passing the bikes again, I had a heavy heart.

Prayer for compassion

My impression from my initial visit 2 months ago was the Mr. J had led a very hard life, had been in jail, had been homeless at one point and had extensive alcohol and drug use in the past. He now had metastatic lung cancer to his brain and I was making a follow up visit.  He’d been drinking 24 ounce beers all day, so my initial expectations for the visit were very low.

I went through the usual stuff, asking about pain, constipation, appetite, sleeping, etc. He was sober enough to answer through the questions, but at times would start to drift off again.  I’d watch him light a cigarette, take a puff then forget it was in his hand. It’d continue to smoke up the room and my lungs, and he’d drift back to sleep.  “Mr. J, you need to be careful when you’re this sleepy and smoking, I’d hate to see this house catch on fire.” He’d wake up, the cigarette now burned to a little nubbin and puff once more before lighting another. 

I really wanted to finish up.  It was the last visit on Friday afternoon and I was queasy from the smoke.  I, however, forced myself to be patient.  “Anything else on you mind?”

Mr. J then surprised me.  For the next 15 minutes he began to talk about God.  He spoke of how sad he’s been.  How at first when he was diagnosed he questioned God, “why me, why my family?”  He voluntarily said that he’s come to an acceptance now.  He still prays that God will heal him, but he is at peace with his disease. He said the hardest thing now is that his mom and aunt haven’t accepted it.  He then fell asleep again and even with another question to follow up on his statement, he kept sleeping.  I sensed he had reached his end point. 

I went up to him to say goodbye, again having to shake him awake. I asked if there was anything else we could do and he said “just pray for me”.  I went deeper, “How should I pray for you?” He asked for strength, and then just as I was turning to go he chimed in, “one more thing to pray for, pray that I have compassion.” 

I was actually moved by his simple requests. A man, dying of cancer, who has had problems sleeping, problems with pain and anxiety, a man who has struggled with things he’s not been proud of in his life.  The two things he wants most are strength and compassion. 

When I had word that Mr. J was drunk and emotional, my own prejudices imagined he’d either be riled up,  flirtatious or weeping with self-pity.  I was shocked to find his emotionality was appropriate.  He’s doing the work people are supposed to do, as they get ready for death.  In fact, Mr. J, with his cigarettes and alcohol, his stab wound scars and tattoos, was doing a better job coping than many of my other patients.  More surprising to me than even the work he was doing on death, was that he’s been able to move beyond ego centrism.  When he asks for compassion, he’s thinking about others, and how he acts towards others.  Death and disease are often so inward, focused solely on self and how to feel better, that I rarely find people wanting to improve themselves for the sake of others.

I had to think, when was the last time I asked for compassion?