Tammy accompanied Carmen, her aged mother, in the transport vehicle from the hospital to our hospice unit. Carmen is suffering from gradually progressive heart failure, along with dementia. About seven years earlier, Tammy and her husband had moved into Carmen’s spacious home, as it became clear that her mother would need more supervision in her daily activities.
Gradually, Carmen’s world had narrowed to watching the food channel for hours at a time. In brief lucid moments, she would fret about why she was still alive when her husband and friends were all gone. Mostly, she drifted away into her own world. She became incontinent, made worse by the diuretics that removed excess fluid caused by her heart failure. Carmen’s body shrank along with her mind. Once 5 feet, 4 inches, she was now barely 5 feet, and her weight dropped from 120 to barely 90 pounds. For the last two years, Tammy had been sitting with her mom during meals, encouraging her to take another bite. Over this last year, she had actually fed Carmen, who no longer left her bed.
One morning, Tammy could not rouse her mom. Panicked, she called 911 and rushed her once again to the emergency room. After hours of blood and urine tests, a chest x-ray and CT scan of the brain, it was determined that Carmen had a urinary tract infection as well as mild dehydration. She was admitted for careful re-hydration with IV fluids and antibiotic therapy. Although her lab tests improved and her fever resolved, Carmen remained somnolent. Her brain was not recovering from this recent insult to her body. Upon consultation with a palliative care nurse, Tammy reluctantly agreed to transfer her mom to hospice, where the focus would be on comfort, rather than life-prolonging interventions.
While the hospice team is settling Carmen into her new bed next door, Tammy fills me in about her mom’s gradual decline and the fact that she had not responded, despite five days of aggressive treatment in the hospital. Opening her eyes only briefly, Carmen had not recognized or spoken to her daughter.
Tammy and I move to her mother’s room for Carmen’s physical exam. When I introduce myself to Carmen, much to our collective surprise, she opens her eyes wide and greets me with, “Hello, doctor.” She nods that she’s hungry and would like to have a snack. I turn to Tammy, who gives me an incredulous and somewhat defensive look, as if to say, “I wasn’t lying to you.” Now, it’s Tammy who’s confused, and feeling guilty about having admitted Carmen to our hospice unit.
Back in our quiet room, I review with Tammy the sequence of Carmen’s steady decline that she described to me earlier, including several recent hospitalizations for heart failure and prior urinary infections. Tammy nods to her mom’s complete dependence on her for food and fluids, but still looks troubled. I need more information. “You mentioned, over the last few years, that your mom occasionally questioned why she was alive, when everyone else had died. What do think she was saying about her life?”
Tammy thinks for a moment. “Mom hated being dependent. She was always taking care of everyone else. She kept her home spotless, and she loved to cook Sunday dinners for the entire extended family. She was really frustrated when her mind started to go, and was even more aggravated when she couldn’t keep her home nice.”
I ask another question. “Fifteen years ago, if you were able to show Mom a video of herself during this last year, what do you think she would have said?”
Suddenly, Tammy is animated. “Oh! She definitely would have told me to stop forcing her to eat! And, she probably would have said something like “Sweetie, stop taking me to the hospital and treating me like your broken doll.” Tammy’s eyes fill with tears. “I’m her only daughter, you know. She was a great mom! It’s my duty to care for her, isn’t it?”
I smile. “My mom had heart failure and dementia, too. Many times she told me that she was ready to go. But, the first time her lungs filled with fluid, I rushed her to the hospital. And here I am, a hospice physician. Then, the second time it happened, I wondered if I should even offer Mom a trip to the hospital, knowing in her panic to breathe she might say yes; or, instead, bring her straight to hospice and keep her comfortable. My brain knew the right answer; but my heart….” I stopped speaking.
Tammy slowly dries her eyes. “So, what did you do?”
I giggle. “I called my brother! I couldn’t make the decision by myself. Even after 15 years of hospice work, my heart felt like I was killing my mother. Fortunately, my brother said, “ Do what you know Mom would want – take her to hospice.
Tammy, your brain knows what your mom would want. You’re not killing your mom.”
Tears stream down Tammy’s face. “But that’s how I feel right now.”
“Of course. Your feelings show how much you love your mom. So, what‘s the most loving thing you can do for Carmen today?”
“Well, for Mom, I think I should let her go. For me, I’m not sure.”
I comment on our all too human ability to hold opposite feelings at the same time: wanting to be free of endless caregiving, wanting to get on with our own life, wanting it to be over for Mom, yet not wanting to lose her, and definitely not wanting to be a bad son or daughter. It’s never either/or, because all these feelings are true.
I say, “Since you don’t have a brother, may I give you permission to remember what Mom said she wanted?”
Tammy sits quietly. “Ok, if Mom stays awake and starts to eat and drink again, I’ll take her home. But, this time, I’m not going to bring her back to the emergency room when her urine starts to smell or she stops eating and drinking. That was a horrible experience for us both! But, if she doesn’t stay awake, I will stay with her night and day in her hospice room until the end.”
Over the next few days, Carmen is able to take in adequate fluids and food. In fact, she’s a bit more animated than she had been at home. Tammy and I laugh several times at the cosmic joke, that we are “not in charge,” not the hospice physician, not the daughter, and not even the Carmen of fifteen years ago, who, “in her right mind,” would have been horrified by her prolonged decline.
Tammy will take her mother home once again, for who knows how long. I ponder the mystery at the end of life: whether the body’s will to live simply overrides the mind; or whether the soul of this demented woman knows that her beloved daughter still is not ready for her to go; or whether we are simply not privy to God’s bigger plan.
