“I’ll be there as soon as I can.”
Returning handset to cradle, Cassandra stared blankly for a few moments before taking a deep breath. In a way, this was the call she had awaited for months, long months of visiting Mina each Tuesday for an hour, sometimes two, sometimes more. Now Mina was hospitalized and Cassandra had received a call from her oldest son asking that she join them there.
“We found her passed out on the bed on Saturday,” the son, Adam, had said. “By Tuesday, fluid had built up around her heart. Now, her ammonia levels are climbing which means she’s out of her head sometimes.”
“Is Laura there?” Cassandra asked. Laura was Mina’s hospice nurse and one of the best.
Adam cleared his throat before answering. “She was here… the VA staff asked her to leave.”
Cassandra sighed. Unfortunately, she was not surprised by this answer. Hospitals, nursing homes, assisted living facilities, even healthcare providers themselves all have differing views of hospice care; views that range from uncertain to violently opposed. And past experience with this particular facility had taught Cassandra that a hospice nurse would not be welcome there.
“What did Laura say before she left?” Cassandra asked.
“She said that she feels that Mom is still at herself enough to make her own decisions.”
“But you don’t agree with her?”
“I don’t know, Cassandra. She won’t take her meds, won’t listen to the VA doctors, won’t listen to us.” Adam’s voice cracked; it was clear he was exhausted. “The staff here wants me to use my Medical Power of Attorney to override what Mom wants, but I just can’t go there yet. Not yet. Then Andy suggested we call you. He thinks she might listen to you.”
This surprised Cassandra. Andy, his brother’s junior by eighteen months, was “the quiet one”. Except to express his doubt at the efficacy of hospice in general and of grief counselling specifically, Andy had seldom spoken to Cassandra; she was surprised he even knew her name.
The drive to the VA Hospital was blessedly short, the hike to Mina’s room much longer. Cassandra didn’t really mind, though, as it gave her time to think about what she was walking into. At sixty-two, Mina Stewart had been battling Breast Cancer for ten years. When the disease metastasized to her bones, she told her family that she was ready to enlist the help of hospice services. Both widowed and divorced, Mina’s family consisted of her two sons by two fathers, one dead and the other estranged, three young grandchildren and a younger sister, Martha, who looked upon Mina more as a mother than a sibling. And none of this family was ready to see Mina “give up” – a common misconception of hospice care and one into which Mina’s loved ones had completely fallen. It had taken a Certified Hospice Nurse, the Hospice Medical Director, and Cassandra to overcome their objections and the ensuing months with them had proved a tentative truce at best. Now that Mina was at what appeared might well be the end of her life, Cassandra wondered just how much struggle lay ahead for them all.
“Cassandra,” Adam said, extending his hand. “I didn’t even realize when I called that it was already after 5:00. I’m sorry. Thank you so much for coming.”
She shook his hand firmly. It was dry and chill. Looking into his eyes, she saw frustration and exhaustion in the hollow shadows that extended down to his cheeks.
“Andy’s with her. Well, he’s back there, anyway. He won’t go into the room anymore.”
“That bad?” Cassandra asked.
Adam nodded. “She’s this way.”
As they walked down the old linoleum hallway, Adam gave Cassandra the short version of Mina’s decline. In addition to the rising ammonia levels and the fluid build up around her heart, Mina had a raging urinary tract infection for which she refused antibiotic treatment. But the most difficult thing for her family was the uncharacteristic change in her personality. Mina was a strong, independent woman with a kind and compassionate heart. While capable of holding her own in any debate, she was never argumentative and certainly never loud or foul-mouthed, all of which she had been within the past twenty-four hours.
“I don’t understand what all this has to do with breast cancer,” Adam said tiredly, stopping in the middle of the hall.”
“I know,” Cassandra said, touching his arm. “Adam… tell me what you want.”
He looked at her quizzically. “What do you mean?”
“I mean… what do you want?” Cassandra looked him in the eye. “What do you want me to do? Why am I here?”
Adam stood still for a moment, then his shoulders drooped.
“I think I need you to find out what my mother really wants. And why. And if she’s really capable of making these decisions.”
“And if I find that she is? What then?”
He took a deep breath, rubbed his eyes with the heels of his hands. “Well. Then. I’ll have to try to do what she wants. Whatever it is. I’ll have to get ok with that. We’ll all have to get ok with that. Somehow.”
Cassandra smiled at him, squeezing his arm. “Why don’t you all go grab some dinner while I’m here? It might be better if I saw her alone. I’ll stay until you get back.”
“You’re probably right,” he nodded. “Ok. I’ll send Andy to pick something up and we’ll be in that waiting area down there.” He pointed to the opposite end of the hall. “Thanks.”
Cassandra watched him walk away, took a deep breath, then quietly pushed open the door. It was a private room – Thankfully, she thought – though windowless, cold and grey. Cassandra never ceased to be disappointed at the medical facilities provided to Veterans. At the age of twenty-one, Mina’s husband of two years was killed in Viet Nam. Her compensation for being a nineteen year old widow with a six month old child was a limited version of her husband’s Veterans Adminitration medical benefits. These benefits had provided chemotherapy to fight the cancer and radiation to ease the pain of the bone metastases but none of it was “free” and certainly none of it had come easily.
Mina lay motionless, propped up high in the bed, wearing pyjamas and slippers in matching shades of pink, her signature colour. Even though she was only sixty-two, Mina’s short hair was completely white. “It grew back that way after my first round of chemo,” she’d told Cassondra on her first visit all those months ago. “But, I kind of like it.”
And, indeed, Mina’s hair was beautiful. White, not grey, not silver, but a shiny white that lay in soft, natural waves against her forehead and the nape of her neck. Today, those waves were damp with sweat, a fine sheen of it clung to her upper lip, and her hand was clammy as Cassandra touched it.
“Mina…” she whispered. “Mina… it’s me.”
Slowly, Mina’s eyes fluttered opened, struggling to focus.
“It’s me… Do you know who I am?” Cassandra squeezed her hand gently.
She opened her eyes wide. “My Cass,” she whispered.
Cassandra smiled. “That’s right. Your Cass. Do you mind if I sit with you for a bit?”
Mina closed her eyes and nodded. Cassandra sat on the edge of the bed. The extra fluid had swollen the sick woman. Her face, eyes, and hands were puffy, pasty. Cassandra thought how bad she must really feel to lie here like this, no makeup, her lovely hair a dirty mess.
Neither of them spoke. More than once, Mina had told Cassandra how much she appreciated the chance to just “be quiet” with her. “You never push me to speak just to get rid of the silence,” she had said. Cassandra had found this to be true with many of her patients. It was as though, after months and sometimes years, of talking and arguing and debating with family, with healthcare providers, with themselves, they welcomed the opportunity to just sit in silence, accompanied silence, in which they were not alone, yet were not required to share anything but stillness.
After a while, Mina squeezed Cassandra’s hand.
“The boys called you?” she asked, turning her face towards Cassandra. It was drawn though puffy; Cass had never seen her so tired.
She nodded, then gave Cassandra a weak smile. “I’m happy to see you.”
“I’m happy to see you too,” Cassandra said, squeezing her hand gently.
After another, shorter silence, Mina said. “They won’t let me go.”
“It’s time for me to go.”
Mina grasped hard at Cassandra’s hand. “Help them.” It was more a command than a request; more demand than plea.
“I will,” Cassandra said, though she didn’t quite know how yet. “But first, I need to know what you want. I need to understand it completely.”
“I want,” Mina said, looking her full in the face, “to go home. To get out of this place. To be in my own bed in my own home.”
“And… I want to be let alone.”
“Tell me what that means, please.”
Mina breathed deeply, the tiny muscle under her left eye twitched.
“Are you in pain?” Cassandra asked.
“Yes,” she said. “But it’s manageable.”
Cassandra nodded. They had long ago established that “manageable” pain was just that and Cass was not to push her beyond that answer. “Please, tell me what you mean when you say you ‘want to be let alone’.”
Mina turned her face to the ceiling. “It means that I want everyone to stop poking and prodding and pulling on me. It means I want everyone to stop telling me I have to fight. I don’t have to fight. I’m all fought out. I don’t want to fight anymore and I don’t have to!” She gritted her teeth. “I don’t have to. Do I?” she asked, turning back to Cassandra.
Cassandra rubbed her forearm gently with the back of her hand. “No. No, Mina, you don’t.”
She sighed audibly, tears standing in her eyes.
“You don’t,” Cass said again. “But, I think we do have to find a way to help your family understand that.”
“I know,” she said. “I think Adam does. Well, mostly. At least more than he thinks he does.”
Cassandra nodded in agreement.
“I don’t know if Andy will ever understand.”
“How does that make you feel?” Cassandra asked, still gently stroking her arm.
Mina sighed. “Well, it used to be enough.”
“Enough to keep me going… to keep me fighting… for him, for them. Of course, I want more time with my children, my grandchildren. Of course, I want to be there for all their important events, for all the great times in their lives.” Tears began to fall from her blue eyes to the wrinkled pillow beneath her head. “But I’m not going to be! And Andy seems to think that if I just want to be enough… if I want to live enough… then I will.”
Silently, Cassandra slipped a tissue into her hand.
“But I won’t!” Mina went on. “I can’t! And I’m too tired to go on fighting the way they want me to fight.”
She was sobbing now. Cassandra stole a glance at the blood pressure/pulse monitor just over her head and made a mental note of where the help call button was as she handed Mina another tissue.
“Have you told them this?” Cassandra asked as Mina wiped at her tear stained face.
Mina shook her head. “Well, I’ve tried. But, they won’t listen.”
“It’s a difficult thing to hear,” Cass offered
“Yes, I know,” Mina’s sobs subsided. “I know it is.”
They sat in silence for a few moments, Mina blowing her nose as her breathing returned to normal; Cassandra staring, saying a silent prayer to all the patients she’d ever had to help her know what to do next. Finally, Cassandra spoke.
“Mina… Adam asked me to come determine if you’re still well enough to make decisions…”
Mina laughed. “You mean to find out if I’m crazy…”
“Something like that,” Cass answered, laughing a bit too.
“Well,” Mina said, looking up. “What’s the verdict?”
Cassandra could detect a bit of fear behind her smile. She was careful to look directly into Mina’s eyes. “You’re not crazy,” she answered. “And as far as I can tell, you are still completely capable of making decisions as to your own care.”
Mina sighed deeply. “Thank you.”
“But…” Cassandra took her hand. “As I understand it, if you choose not to treat this infection, the ammonia levels will continue to build and you may well lose that capability. At that point, Adam, as Medical Power of Attorney, will be the one to determine your care. You do understand that, don’t you?”
Mina nodded, closing her eyes.
“So,” Cassandra continued. “It seems to me that before you get to that point, we need to be sure that Adam – and Andy – and all the rest of your family, understand – really, completely, fully understand – just exactly what it is that you want. And the implications of either going forward as you wish or not doing so.”
“But how do we do that, Cass? I’m just so tired…” Mina’s eyes were awash again and her hand in Cassandra’s had begun to tremble. Cassandra realized that there wasn’t much viable time left; that if this woman were to end her life as she wanted, in her own bed, in her own home, free of fear and pain, with her friends and family around her, these issues must be resolved quickly.
“Well,” Cassandra said, squeezing the sick woman’s hand. “We talk. We get Adam and Andy – and Martha too, to join us here and we talk. And, if it’s ok with you, I’d like to have Laura come back, just so she can answer any clinical questions you all may have. Then together, we work out a way to allow you to have the end of your life be just what you want it to be – whether that’s hours or days or months. Because, Mina, I’m sure that’s what your family wants too – they’re just scared and tired and they don’t want to lose you.”
Silently, Mina nodded, then lay still for a minute before turning to look at Cassandra.
“Can you get everyone together?” she asked.
“Of course,” Cass said, opening her phone. “It’ll only take a few minutes.”
“Thank you, my Cass,” Mina said softly. “Thank you very much.”
© s rogers 12 april 2009