My mother turned 80 last Saturday. In the weeks and days leading up to her birthday, I held my breath, hoping she would stay healthy enough to attend her birthday party. Each time I spoke with one of her caregivers in the weeks and days leading up to her birthday, I told them, “The goal is to keep her out of the hospital at least through her birthday.” She’d been doing better since her last hospital admission over Thanksgiving. A couple of weeks before her birthday, she and I had a forty-minute telephone conversation. The first real conversation we’d had in many months. A snippet:
“What day is tomorrow?” mom asked.
“Saturday,” I replied.
“You get to sleep in, then. Catch up on some rest.”
“A little,” I said. “At least until the cats start jumping on my head asking for breakfast.”
“Here’s what you do,” she said. “You put a can of food under your pillow, and then when they start bugging you, you pop it open, put it on the floor, and go back to sleep.”
Mom was feeling good enough on that call to problem solve, and be funny doing it.
Mom’s 80th birthday fell on a Saturday. I took off the Friday before the big day so I could make the dishes I was bringing to the party and be all set for the drive to Houston first thing in the morning. I wanted to get to my sister’s house early to help her get ready for the party. At at 8:30 Friday morning, as I was still lolling around in bed, the phone rang. A Houston number. Shit.
“Hi, Ella. It’s Susan. Your mom’s okay.”
Susan is the head nurse at mom’s assisted living (AL). Whenever her calls begin with “Your mom’s okay,” my mom is not okay. She’s not at risk of imminent death. But she’s definitely not okay.
“She had a fall on the way down to breakfast. We found her on the floor by the elevator. She’s okay, but she bumped her head. She has a little scratch on her cheek. And she says her knee hurts. The paramedics are here. I know tomorrow’s the big day, but we’re sending her to the emergency room to get her checked out.”
I’d recently had a long conversation with the physician’s assistant (PA) about mom’s frequent trips to the emergency room, and had asked if we could do anything to try to limit them. I asked about hospice. The PA didn’t think my mom would yet qualify for hospice, but she would ask the doctor to evaluate her if I wanted him to. I asked her if we could better manage her care without frequent trips to the ER, short of getting her on hospice care. The PA told me that AL erred on the side of sending people to the ER, and that I always had the right to refuse. The problem was that oftentimes, it’s hard for family members to make the call whether it’s medically necessary, particularly when family members aren’t there. She told me in the future, I could text her at any time, and she would help us determine what was best for my mother. We left it that we would hold off on the hospice evaluation for now, unless mom’s condition changes. And meanwhile, I would enlist her help if AL was contemplating another hospital visit.
If there’s one thing I’ve learned, sending my demented mother to the ER alone was not ideal, if it could be avoided. Invariably she would be admitted and subjected to all manner of diagnostic tests. Usually they’d determine she had a urinary tract infection (UTI), put her on an IV antibiotic, and send her back to AL days later. Each time she returned to AL after a hospital visit, it took her weeks to get back to “normal,” and often that normal was a step down from her previous cognitive function. The last time she went to the ER, in early December, they kept her for two nights “on observation” and a battery of tests, and then sent her back to AL with an oral antibiotic for yet another UTI.
I didn’t tell my sister right away I’d had the hospice conversation with the PA. I remember her losing it when my father was put on hospice care. It was as if she thought he was going to pull through until the moment they said he could be moved to hospice. So I knew if I mentioned hospice for our mother, she’d panic. She’d think the end was nigh. Even though the end might not be nigh for six months. And even then, it was difficult to predict. She still could be with us in six months, and be certified for another six months of hospice care. The goal was to stop sending my mother to the hospital every few weeks for another round of tests and antibiotics. To treat her for whatever infection she had at AL, and to stop running all the damn tests.
Eventually I told my sister about the hospice conversation. I needed to prepare her. I needed to plant the seed. To get her thinking about shifting my mother’s care from aggressive to palliative.
“She’s not anywhere near that point,” my sister protested.
“It’s not about mom being near imminent death. Hospice care for dementia patients isn’t like that. It’s not like with dad. And we learned a lot with dad. I would never put mom through what we put dad through. Brain surgery on an 83-year-old man in late-stage dementia? Even the surgeon was upset we’d done that to him.”
“Well if we’d caught it earlier,” she said, “dad would have been okay.”
My dad had hit his head three weeks before the surgery was done. They’d waited three weeks after the fall to admit him to the hospital. When they found out he had a subdural hematoma, they did emergency brain surgery, rather than calling hospice. We didn’t know any better, then. We know better, now.
“He was 83 with late-stage dementia. He would not have been okay. He spent most of the day sleeping. He couldn’t dress himself. He was incontinent. They removed his eyelid due to cancerous cells and he was wearing a bandage over his eye because the doctor couldn’t do the repair surgery in his condition. We were turning him into a Frankenstein. We were struggling with the idea of a feeding tube.”
“That was for mom,” my sister said.
“Yes, that was for mom. And luckily she did not do that to dad. She let him go. And we need to start thinking about what we’ll do if these issues come up with mom. If she falls and hits her head and they tell us she needs brain surgery, I’m not going to do that to her. She can’t walk. She often can’t carry on a conversation. She keeps getting infections.”
“She’s doing great, now. She’s not there yet,” my sister said.
“You’re right, she’s not there yet. But she will be. And I don’t want us to wait too long to get her on hospice care. I want her to have the benefit of the best care possible as soon as possible. I don’t want to put off getting that care for her because we can’t come to terms with losing her.”
“Okay. But she’s not there, yet.”
So here I was, the day before mom’s 80th birthday, a big party was planned, something my mother had looked forward to for months, and the paramedics had her on the gurney getting ready to send her to the ER and AL was seeking my permission.
“Can I talk to the paramedic?” I said.
She put the paramedic on the phone.
“How are her vitals?” I asked.
“Her vitals are fine.”
“Does she seem in distress? In pain?”
“Well, they said she was complaining of knee pain. But she seems okay. She’s talking. Smiling.”
“Is she bleeding?” I asked.
“No, no she’s not bleeding.”
“I don’t want to send her to the ER just as a CYA for the AL facility. Please send her back to her room and we will wait and see how she’s doing.”
And so that’s what they did. Following which, my sister and I had a text argument. My sister wanted them to run tests, do x-rays, make sure she was okay. I told her I was not putting mom through that unless it appeared necessary. I then contacted the PA who agreed we should “wait and see” and if mom appeared to be in pain, she could order mobile x-rays. She also advised they’d done a urine culture on Wednesday because mom seemed a little off, and we were waiting for the results to determine whether an antibiotic was necessary. She’d let me know as soon as the results were back.
Mom made it to her 80th birthday party. I picked her up on Saturday at AL, put a tiara on her head and wrapped a hot pink feather boa around her neck, and wheeled her out to the car in all her birthday-girl splendor. Mom visited with friends she hadn’t seen since my father’s memorial service over three years ago. She got to spend the day with grandchildren and her great-granddaughter, surrounded by balloons and streamers, and a sumptuous chocolate cake I picked up at my favorite bakery in Austin. (My sister gave me a hard time for spending money on an expensive bakery cake and not making it myself. I felt some satisfaction, therefore, when mom said it was the best chocolate cake she’d ever had in her life.) Later, mom would tell me she had the best day she could remember having for a very long time.
When I took her back to AL early in the evening, she was tired. The nurse checked her blood sugar (sky-high from the cake) and helped her get dressed for bed. I noticed in her night-gown that her knee was black and blue where she’d fallen. The nurse didn’t think anything was broken, but said she would order a mobile x-ray to be certain. She didn’t have an ice-pack, so I ordered one from Amazon and put a loaf of frozen bread on her knee. (We hadn’t yet gotten the urine culture back.) I stayed with mom until she was ready for bed, and then headed back to Austin to give Sadie an overdue-dose of subcutaneous fluids. (Sadie is doing spectacularly.)
On Sunday afternoon, my phone rang. A Houston number. Shit.
“Your mom’s okay. We found her on the floor by her chair. We don’t know if she fell, or if she just slid down. She seems fine. She’s smiling and laughing. I just wanted to let you know.”
This time, they didn’t recommend sending her to the ER. Instead, they promised to follow up on the urine culture and the mobile x-ray. Moments later, my sister called me.
“Why am I getting another call that mom has fallen again? What is going on?”
“She’s not okay. I saw her today, and she was not okay. Her knee was black and blue. And now she’s fallen again. If we had sent her to the emergency room, we’d know now what we were dealing with.”
“You and I have a fundamental disagreement about how to deal with this. I do not believe it is best for mom to send her willy nilly to the emergency room by herself every time the slightest thing is wrong just to cover AL’s ass. Wait-and-see is a perfectly okay approach. And they are doing mobile x-rays tomorrow and waiting for the urine culture. What could the hospital do that we are not already doing for her?”
She stared yelling at me then.
“If you’d let her go to the hospital, we’d know what was wrong by now. We’d know what we’re dealing with. We’d know if she’s okay. Nothing’s been done. No x-rays. No urine culture.”
“Why are you yelling at me?” I asked.
“Because I have no control over anything. I have no control over what happens with mom. You say she doesn’t go to the hospital, and she doesn’t go. And I had a hard day. I am tired. I don’t want to deal with this now. I don’t want to talk about this.”
And she hung up on me. The second time in the past few weeks she’s done so.
On Monday, the mobile x-rays were done. Negative, except for osteoporosis in her hip. The urine culture came back. Mom has another UTI. They started her on an injectable antibiotic, which the home health nurse will give her at AL for the next ten days. No hospital visit necessary.
Mom had a good 80th birthday. She made it to her party. She ate chocolate cake and ice cream and her blood sugar went sky-high. She said it was the best day she’s had in a very long time. Hallelujah. This is my goal. I’m going to do everything in my power to make sure mom gets the bits of joy within her reach for as long as she has left. And if that means forgoing a trip to the hospital for another round of tests, that’s what I’m going to do. Because my mother’s joyous moments are more important than stemming my and my sister’s anxiety with hospital visits and doctors and tests. This is not about us. It’s about my mother. Let her eat cake.