My mother has Alzheimer’s, diabetes, and as of three weeks ago, a broken hip. Shortly after my father died (coming up on three years ago), she made me her legal decision-maker in all things financial and medical. Taking care of mom’s finances turned out to be the easy part. Making medical decisions is decidedly more complicated.
Mom’s decline has sped up over the past six months, with repeat infections (urinary tract and MRSA), as well as a more pronounced diminishing of cognition. She’s fallen several times, which resulted in numerous trips to the emergency room. Sometimes she was admitted for IV antibiotics. Sometimes she was sent to a rehab hospital for physical therapy before returning to her assisted living (AL). With every hospital visit the dementia progressed. She became more confused. She began speaking less. She could no longer answer the phone when I called. Every time she was sent to the hospital with a new emergency, she returned to AL with a new, and lower, “baseline.” She was always worse in the hospital and rehab facilities, and would regain some cognition once she returned to AL and familiar surroundings. And her damn cat. Because of the toll the hospital visits were taking on mom, I began to question whether they were strictly necessary, or whether they were more of a CYA for the AL. On the day before mom’s 80th birthday, I refused to allow her to be taken to the emergency room when she appeared to be fine after a fall. (Had she gone, she likely would have missed her party.) My sister did not agree with that decision. Luckily, it turned out to be the right one, and mom was fine.
I’ve thought a lot about what it means to be a substitute decision-maker. In the beginning, I thought it just meant to make sure the doctors and nurses take good care of mom. And maybe, somewhere down the road, to not allow mom’s life to be lengthened by feeding tubes, CPR, or other “extreme” measures. But over time, I’ve learned that in between those two goals, there are a lot of nuances when it comes to treating a loved one with Alzheimer’s. No feeding tubes. No ventilators. No CPR. That much is clear. But what about pneumonia or flu vaccines? Hospital visits for infection? IV antibiotics? Replacement of a pacemaker battery? Surgery to repair a fractured hip?
I did not have to make the decision about whether my mother should undergo surgery to repair her hip fracture. The fracture was nondisplaced and not causing mom any discernible pain, so the doctor said surgery was not warranted. I’m unsure how much of his decision was related to mom’s diminished mental status, and how much was due to the nondisplacement of the break. Mom is now back at her AL on hospice care. She’s also on bedrest for six weeks to allow the fracture to heal. The orthopedic doctor said he wanted to see her in his office in two weeks for x-rays. I asked the physician’s assistant if we could do mobile x-rays since office visits are difficult for mom. He insisted mom needs to be seen by the doctor. My sister also is pressing for mom to be seen by the doctor. I’m hesitant. Since mom is non-weight-bearing due to the fracture, she’d have to be transported to the doctor’s office by EMS. Since mom is not talking, I don’t anticipate that a physical exam would be of much value. She can’t tell the doctor anything. He may get a barely discernible nod or shake of the head, but how are we to know she’s accurately answering the question being posed to her? And then there’s the stress of the doctor’s visit. She’s hardly communicative at this point; how much would a visit to the doctor set her back?
I talked it over with the hospice nurse. She suggested I look at it in terms of cost to mom, versus payoff. The stress of the transport and visit would be great. The doctor likely would not get much information of value via an examination. The x-rays can be done by a mobile technician at mom’s AL apartment. And then we took it a step further: if the doctor finds the fracture is not healing, would we opt for surgery? I would not. So rather than transporting mom to the doctor, we’ll get mobile x-rays in a few weeks and send them to the doctor. Hopefully the doctor will tell us mom can begin to bear weight on her hip and she can move from the bed to the wheelchair. And once in the wheelchair, we can push her outside to sit in the garden and watch the birds.
My sister isn’t speaking to me. I’m not sure if it’s because I haven’t made arrangements for mom to see the orthopedic doctor, or because I gave her hell for taking away the strawberry shortcake I brought mom last weekend after I had gone. (The caregiver tattled on her.)
“If you take away her favorite pleasures, what’s the point of keeping her alive? Then you’re keeping her alive for you. Not her.”
For now, my sister’s silence is making things easier. I feel more clear-headed. I’m attempting to make decisions based on what my mother would want. Not based on what my sister wants. Or based on my pushing back against my sister in anger. I try to put myself in my mother’s place and imagine what she would want for herself at this point in her life. I think back to when my father died, when my mother said she didn’t want to go on living without him. I think about how she wanted to do less and less for herself, and told me more than once she’s taken care of everyone else her whole life; now, she wanted to be taken care of. I think about my mom’s increasing reluctance to engage in physical therapy. (She’s been labeled “non-cooperative” more than once.) And about the times she’s told me she doesn’t care if she can use her walker; she’s fine being confined to the wheelchair. She’s likes being fed by the caregiver, instead of struggling with the utensils. And she wouldn’t mind if she died of eating too much chocolate cream pie. (Yesterday I brought her coconut cream pie and an empty Greek yogurt container in which to hide the leftovers so my sister wouldn’t take it away from her.)
Yesterday for my visit, the caregiver had dressed mom in real clothes for the first time since she got home from the hospital two weeks ago. The caregiver said mom seemed pleased to be out of the nightclothes. Mom was wearing lipstick, her glasses, and her watch. Her hair was fixed and the caregiver had painted her fingers and toes. Mom talked little. But she said “hi” when I came in. She nodded in response to a few of my questions. When I gave her kisses, she smiled. She petted the cat when I put him next to her on the bed. I brought mom flowers, which I arranged in a vase and set on a bookshelf next to the tv. When I turned my back to the flowers and faced mom, she blurted,
“Watch that cat!”
I turned around, and sure enough, her cat was eying the flowers, his tail swishing back and forth. It was mom’s only full sentence of the day. I love that damn cat.
Being the decider isn’t easy. But I think I know my mom well enough to know she wouldn’t want us to attempt to extend her life by any means, let alone by any means possible. And so I’ll keep the focus on pampering her and keeping her comfortable. And making sure she gets lots of her favorite simple pleasures: pie, the damn cat, and kisses. I may end up completely estranged from my sister in the end. A risk I’m willing to take. Because as the decider, my responsibility isn’t to do what my sister wants for our mother, or even to do what’s best for our mother by some medical standard. It’s to do what our mother would want for herself.