Answering a call Monday evening. Letitia, the saintly caregiver for my 82-year-old mother is on the line. “Heather, we’re in the emergency room at UCSF. Mrs. Millar was trying to get into bed after using the commode. She slipped, and I just could not hold her up. She fell, and I think she may have broken her leg. We are waiting for the x-ray now. No. No need to come down just yet. I will let you know if they admit her to the hospital.”
Reflecting on the intensely personal, yet formal, relationship that my mother has with this delightful, 90-pound Filipino lady and her sister, Flora, who is equally diminuitive. These tiny ladies watch over my mother 24 hours a day. They twist her long, barely gray hair into Princess Leia buns. They make her meals. They know when the cantaloupe is just soft enough for her rotting teeth to handle. They cajole her into taking her meds. They wipe her bottom and change her diapers. They give her a sponge bath every day even though she yells the entire time they do it. They will stay up all night if she’s afraid and cannot sleep. They find the emotional strength to ignore her when she cries out, involuntarily, over and over, “Oh! Oh!” or “Help me. Help me!” And yet, they know when those cries signal something real. They have the sixth sense that a mother has about an infant. And yet, they call her “Mrs. Millar.” They talk about “bowels” and “the commode,” eschewing cruder terms. I guess the formality makes the situation tolerable for both the caring and the cared-for.
Driving over to the main hospital branch of UCSF after a “Chemo Teach” appointment to visit my Mom, who has been admitted to the general surgery floor. She looks awful, pale, miserable. She keeps scratching her neck, her back, her arms. Itchiness is one symptom of borderline kidney failure. The kidney problems came on about a year ago, joining diabetes, liver disease, chronic constipation, a host of dental problems that she refuses to address, and a myriad of other, more minor medical problems. She’s crying out more than usual. She hates the hospital. She always hates the hospital. She can’t see the TV. She can’t sleep.
Concluding that being old and frail and sick and confused is actually more difficult than having breast cancer.
Meeting with the attending surgeon to discuss Mom’s options: Her right leg has broken in three places, just below the knee. For at least a year, she has mostly refused to leave her bed, so she has no muscle tone and her bones have all the strength of balsa wood, apparently.
Inspecting the giant cast that extends from her foot up to mid-thigh. A splint further stabilizes the cast, and an Ace bandage covers it all. The best treatment would be surgery, the attending says, to place pins to stabilize the bone. Mom doesn’t want surgery. She never wants surgery. In past crises she has refused surgery for a dangerously abscessed tooth and a broken neck. Why would she change her position now? I point out to the surgeon that all she really wants to do is be at home, in her own bed, in her own room. She has the funds and the help to make this possible. The surgeon allows that she could be treated non-surgically with regular exams and x-rays to check on the bone. We discuss it with my Mom. She wants this non-surgical option. No surprise.
Meeting with anesthesia fellows, surgical fellows and interns, RNs, case managers, social workers. Asking for more pain meds for my Mom. Explaining that her crying out is an involuntary symptom of her early dementia. No, there’s nothing I can do to make her stop. Sorry. Has the doctor signed off on the order for those pain meds? Is there anything they can give her to help her sleep? It’s two days now.
Meeting with two incredibly well-meaning young women, an occupational therapist and a physical therapist. What are your goals, Mrs. Millar? “To walk.” “OK, can you sit up in bed?” They start to move Mom’s leg, she cries out. It hurts too much. She’s halfway there, does she want to go for it? No, she does not. She does not want to do physical therapy.
Motioning to the PT that I’d like to talk to her in the hall. Explaining that the main reason we’re even here today is that my mother never wants to “go for it.” Like most of us, she is pain-averse. Like most of us, she’d like to walk and move around and live a normal life. But she consistently does not want to do the PT necessary to make that possible. PT is often painful. Explaining that she has the beginnings of dementia and that she just wants to go home. They begin to come around to my point of view when Mom tells them that the year is “19,000.”
Saying that I understand that the job of OTs and PTs is to solve problems, but this problem isn’t really solvable. The best we can hope for is to stabilize her, and to make sure she’s happy. This is not the choice I would make, not the choice they would make. But it is her choice, her life. Being glad when they ratchet back their ambitions for my mother.
Spending the next day or so explaining this point of view to a case manager, another attending doctor, a couple of interns and another social worker. Explaining that the family understands the argument for a skilled nursing facility, but that she’s not going to cooperate with the OT and PT there. She doesn’t want anything to do with the social programs there. She won’t like the caregivers there. She just wants to go home and be in her bed and watch TV and be allowed to have a cocktail. She wants to be with her trusted caregivers, Letitia and Flora. She has a geriatrician who handles her care. This doctor makes house calls and will make sure she’s OK. We can arrange for a visiting RN. I am around. Other family members are around.
Marveling at the strength of the medical imperative to solve things. Medical professionals are trained to go for the best solution possible. They are trained to fix things. It’s difficult for them to let a patient make an imperfect choice. It’s difficult for them to hold back on the best treatment and settle for the most realistic. It’s difficult to allow that some things can’t really be fixed.
Fielding a phone call from my Mom on the third day. Letitia, her caregiver, is trying to kill her, she says. The UCSF doctors and nurses are in cahoots with Letitia. It’s an evil plot. No, I can’t wait. I need you.
Placating my Mom. Talking to the nurse on duty. Talking to Flora, who has the good sense to take none of this paranoia seriously. Asking if Mom’s been taking her anti-psychotic meds. She has not. She has been refusing all her meds. Asking if Mom’s been throwing things. She has. She’s also been swinging at the nurses when they try to clear her IV or empty her urine bag. This is what happens when she doesn’t take her meds. She’s got to get out of there.
Talking to the case manager again. Convincing the case manager to convince the attending that she just needs to go home. She can sit in bed and let the bone knit at home. She won’t throw things at home. She’ll be happy at home. She’ll sleep and eat at home. Being glad when the attending leaves a message that they’re going to discharge her.
Going over to the hospital just before they discharge Mom. Bringing my daughter because I don’t have a nanny. Explaining that no, this is not the hospital where Mommy will get her chemo. It’s a giant, 550-bed medical monolith, one of the best hospitals in the country, but just giant. Yes, there’s a children’s hospital here. Kids get really good care here, don’t worry.
Being proud when my 9-year-old is cheery for her grandmother and asks if she needs a pillow. Being happy that Mom seems so happy. “Just moments to freedom,” I say. Mom beams. The storm is passing now that she’s getting her way. She’s joking with the nurses whom she tried to bean with God-knows-what just a few hours earlier.
Watching two teams of paramedics hoist my Mom back up her twisting staircase to her bedroom. Smiling when she jokes with them. She tells them she’s a lawyer, so they better not drop her. “Class of ’53?” one of them says wryly. “We’ll be careful!”
Seeing Mom happily settled in her own bed, with her own TV, a cocktail and her favorite salad prepared by a caregiver she trusts. This is her version of paradise these days. It’s imperfect, but it works for her.