Tough thoughts on caring for others while Doula-ing my elderly mom

I haven’t written for a while. Its been three weeks since my 82 year-old mom entered the VA hospital. (Getting great care, by the way!) My sister and I have been with her everyday. A couple of her dear friends have been by most days. Her lung had collapsed and she struggled with little air for a three days, maybe more, until consenting to go to the hospital. She thought she’d feel better if she’d only get a good night’s sleep. We found out about the collapsed lung after an x-ray.

Caring for an elder is a special gift, I’ve learned. Caring for my own mother has increased her and my capacity and opportunity to love each other. We were pretty close, but now my heart just sings to see her. Its been a delight far more than any trouble driving to the hospital or letting go of home and work tasks. Caring for someone blesses the caregiver more than the needful person. She gets physical help, I get spiritual grace. Seeing the smile of a vulnerable person you are caring for is a motivating reward! I’m learning from her how to be humble in my vulnerability. She speaks praise to each caretaker who comes in. She teases, scolds and threatens with a smile. She is a bit of a flirt and is mischievious. The staff and doctors eat it up. They’ve taken to coming in at night with their coats on for a final good bye. She says it is because she is the only female veteran on her floor. But it is also that she makes them feel good and laugh. She lets them know they are appreciated.

This is not like who my tough mother was. She would hurl an sharp remark before risking sounding soft. She had and has a lot of compassion. Absolutely. But you better be able to swallow it in the form of bitters. Seeing the change reminds me of Shelley Taylor’s work on women and stress. She found that women network and submit to authority figures under stress more often than go to “fight or flight.”

The skills I’ve learned from being a doula at hospital births carried me many of the details of gaining information and asking for specific help tailored to my mom’s needs. The staff is attentive on a professional and a touchingly personal way. But there are still things that my mom would communicate to her daughters that she wouldn’t tell the staff. She didn’t want to be perceived as a “pill taker” so, at first, she wasn’t relaying the occasional pain of the chest tube, for instance, that bothered her especially as she tried to resettle in bed after being up for a few moments. Later, she began to like being pain free and we were able to help her get her Tylenol ahead of trips to x-ray and percocet before repuncturing the lung during her three chest tube procedures. On the first day, the nurse came in with an IV and I felt comfortable helping my mom refuse it. It was standard for all people in for “observation.” This was before we heard from radiology that she had a collapsed lung. So for the last 3 weeks she has been IV free because we didn’t accept a routine that wasn’t specifically needed for my mom. I also know from birth that touch reduces stress, so when the bandage was changed we’d stroke mom’s hand. It definately helped. In two days our fierce little warrior mother was asking for her daughters to come in when ever there was something painful about to occur or could be possible to occur.

Some skills I learned taking care of my mom that I wouldn’t have learned at a birth. I’m not a professional when I’m with my mom, for one thing, so different observations come up. I see my mom try and balance my sister and my need to get information from her physicians with her need to only hear a little information at one time. She can only take in a little before her stress in hearing about lung punctures puts a buzz in her ear that obliterates the sense out of any words being spoken. Her stress blocks the time lines and “If that doesn’t works,” and she hears only that a procedure will be done. Sometimes, they say if A doesn’t take in a couple days we’ll do B. And she thinks B is imminent. I’ve seen this with birthing women, but being a family member now, I can pick up more nuances and understand more about her need to preserve mental health over her need for decision making.

I ask lots of questions. The sort of questions I ask get attention. They are not the usual. I want to know talc grades and long term pain probability and risk of recurrence. One day, a cardio-thoractic physician came in and asked if one us daughters were a nurse. I said, N0…, I’m not a nurse. And my mom piped up, but she’s a midwife. He said, come and hold this tube for me while I restitch it to her chest. Now I have two options, first, faint. No, that wouldn’t instill confidence in the youngest child in the family. So, next thing I know I’m opening his sterile pack and he’s clipping the old stitch and sticking my mother’s thin chest skin with lidocaine and sewing not one but three separate stitches so the tube won’t work its way out. Meanwhile, I’m wiggling a kink out of the chest tube and suggesting a splint be attached to the junction where two tubes join so the kink can’t return (a previous kink, I believe, added 2-4 days to the hospital stay). He builds the splint from tongue depressors and tape. The next day I add another pair of “craft sticks” (as mom calls ’em) because the first set migrated and the kink was threatening again. Holding the tube for the doctor (a non-medical skill to be sure) I wonder at how I get into these situations. Up close and personal with my mom’s tender and punctured skin I hold myself in the discipline I’ve learned and do not allow myself to go to pity. Pity doesn’t serve. Good old pragmatism serves.

But I’m no match for my sister who is advocator in chief. Her mama bear instinct is super powered. In this case, cub instinct. Getting her mom morphine after the talc infusion which was only going to be “uncomfortable” and percocet was going to be enough. The procedure is only uncomfortable, but 2-3 minutes after the procedure the talc inflames the lungs and the pressure from the fluids and the inflammation is severe. Poor little bird. I dropped that ball, forgetting that when a doctor says “uncomfortable due to irritation” they really mean it hurts like hell. The docs said they dropped the ball, too. She’s taught me volumes about fearless advocacy.

There are dozens of little communication errors that come up in medical care as with any group process that covers many details and goes on over time. Errors are going to occur whether for the elderly or the birthing. Having family present reduces some while allows others. I took mom down to breakfast one morning and to her x-ray and we came back with a kinked tube. While not my fault per se, it happened on my watch. Her lung partially collapsed again that day and her tube slipped out that night. A couple days later the doctors went to plan B, talc. My mom was told she’d be on the suction tube for three days after the talc infusion. But she’d been on suction for about ten days before that, trying to avoid talc. No one instituted any different behavior. Communication error. The cardiothoractic doctors meant three days without a minute off. The general medical doctors and nurses thought that meant, just as we had been doing, taking mom off suction to walk to the bathroom or go down stairs for Bingo at 7. One sentence, two meanings.

The desired behavior wasn’t written down. Therefore it wasn’t done. No one meant to be lax. We thought we were following directions. So in our intention to do good we did bad. That is the worst thing about being human and attending to som
eone’s health. Daughters do it, parents do it, doctors do it. We are all going to make a mistake in caring for someone. It is the most humbling and frustrating thing I can think of about being a human.

Somehow we think doctors don’t make human errors. We’ve given doctors superhuman characteristics. I can see why. My mother the patient is vulnerable. She’s scared. The doctor comes in to do a procedure and gives the impression that this is going to save her. She wants to believe that. She believes what he says. Its better for her state of mind.

Sometimes, as a doula or midwife I’m distressed over how many women agree to routine and invasive procedures. Its a different scenario entirely than a sick or hurt person getting specific care. Most birthing women are perfectly healthy. Healthy enough, by far, to given birth with their bodies’ own physiological precision. But my mom had a specific crisis, a leak in her lung. Supporting her body’s ability to heal it was tried two weeks and then a mechanical process (chemical process really) was tried to seal the lung to the lining. Her physiology was compromised before she sought treatment. Unlike a laboring woman, who gets treatment even while her physiology is functioning normally.

Reading the research is a bit confusing. I read several research papers, but did not really have a way to know how that information related to my mother’s case. Sometimes as doulas and childbirth educators we encourage mothers and fathers to read the literature. Do the research. There is a fair amount of stress trying to figure it all out. How does this apply to them, they may think. Could daring to depart from the physician’s course risk their child? Few women in pregnancy and fewer in labor can carry the extra stress of climbing a steep learning curb and maintaining a stability in the support relationship with the doctors they seek help from. We really ask a lot.

Many doulas are so saddened by the outcomes when parents go ahead with procedures that were not medically required. Our concern in the process may only be distracting. Pregnancy is a time for building support, not analyzing it. That needs to come before, for most women. Some can navigate those changes. We need to overhaul our advocacy and create an informed generation before they become pregnant. Thank goodness, doulas and families are there for the patient at any stage in life. Crisis needs support.

Support also comes from the medical staff. I saw magic in that relationship. To have someone with good authority, in fact, some of the highest authority in our culture, someone with know how put their attention on your wound is an incredibly reassuring. The eye contact, comfort and time given to my mother by her doctors was visibly uplifting to her. I felt those were the moments of healing. Through that intimacy and caring around her pain she was able to absorb their message and form a new life without smoking. She is actually excited about it now.

So far tonight, 5 days after the talc, and 6 hours after clamping the tube, mom’s lung is inflated! Its holding!