Leaving Lightly Reflections
I was vaguely aware of my grandmother milling around in the room outside my bedroom. But it was 6:00am, and still dark outside. She slept poorly and was prone to wandering around the house at all hours of the night, so I didn’t think much of it. I tried to go back to sleep.
At 6:15 a.m., however, her voice set my feet to moving.
"Jan, I need your help."
She was critically ill, and this was “my watch.” I was up in a flash. I grabbed my glasses with one hand, and a sweater to put over my flimsy nightshirt with the other. “This is why I came,” I thought to myself.
I had flown across country a few days earlier because my grandmother Louise was in the hospital with congestive heart failure. Heart surgery was anticipated, but at 89 and with severe heart valve regurgitation, it was determined that surgery was too risky. Her doctors sent her home with meds to control fluid build-up in her lungs, along with anti-anxiety pills. They could not fix her. The best they could do was to make her comfortable and let nature take its course.
I stayed with her to help in any way I could – from grocery shopping to doing laundry to straightening the house to paying bills. But perhaps the trickiest job was returning the numerous phone calls from friends who kept a close eye on her. Louise lived alone in a big, rambling house, and the reduction of her cognitive functioning was increasingly obvious and troubling.
Still, she was bright, alert and intelligent, even if frequently confused. Her friends overlooked this, and made a point of taking her to lectures at the library and to cultural events. She had a surprisingly busy social calendar for a woman of any age.
But Louise was an intensely private person, and shared next to nothing about her increasingly frail health, even to her closest friends and extended family. She wanted me to keep her friends at bay without offending them, and without revealing her terminal condition. Because lying goes against my moral code, I had to find a truthful statement that still protected her privacy.
“Louise went into the hospital for tests, and is home now and resting comfortably,” I told them. “She’ll call you back when she feels up to it.”
Precisely because of Louise’s shroud of privacy, her friends were confused by the sudden hospitalization and resulting bed rest. They had no idea how seriously ill she was – and I was not at liberty to tell them.
A few people stopped by for a visit. Louise didn’t want to see anyone, and we kept several people at bay. But a few who were closest to her came anyway. She “held court” with them, keeping up a lively conversation. For three days she was the belle of the ball. To look at her, if you didn’t know anything was wrong, you wouldn’t know anything was wrong.
But when you push a body that is medically compromised, a day of reckoning will come.
In this case, the day of reckoning started before sunrise. By the time Louise came to me for help, the sands in the hourglass had nearly run dry.
Within seconds I met Louise outside my room—my dental night guard still in my mouth. Louise took my hand as she led me down the hallway from where I was sleeping to her room.
“I am dying,” she explained as we walked. “I need your help.”
I was not expecting this. "OK," I replied. This non-committal response gave me time to think without committing either of us to a course of action.
I tried to calm my internal panic. In an ideal world, I would have awakened normally, had my morning cup of tea, brushed my teeth, taken a shower, and gotten dressed before being called upon to help someone die. With my clumsy night guard still in my mouth, morning breath, full bladder, foggy brain and hair pointed in all directions, I somehow didn't feel competent to make life-and-death decisions.
Still, life is not ideal, and at this critical juncture, I was all she had.
“I’ll help you any way I can,” I mumbled through a mouthful of plastic.
The first thing I had to do was to determine if this was a true medical emergency and if Louise was dying NOW, or if her statement was just a generic statement of fact because she was (understandably) anxious about her condition. I knew that those first moments of awakening were the hardest for her, as every day she awoke to the reality that she was dying a slow death. I was the only person in the house with her. Perhaps she was just anxious and needed reassuring.
It was soon apparent that this was not the case. She really was dying, and quickly.
Standard Operating Procedure dictates calling 911 at a time like this. But Louise was ready to go. She did not want medical intervention. She had been adamant that when the time came, we were to let her go. Her son had returned to the west coast the day before, and we were all alone in the house. She knew I would honor her wishes.
Her family, quite naturally, didn’t want to see her die. They wanted her with them as long as possible. I, on the other hand, know that the body is not all there is. There are worse things in life than death, as Louise discovered. She had waited until the family all went home before giving herself permission to die.
Louise and I had discussed this issue several times over the years. She was a strong supporter of assisted suicide, having watched a close friend die a slow and painful death from cancer. Louise did not have the strong faith that I did in the continuation of the soul without the body. But she was a realist. She had lived much longer than she thought she would; in fact, she had outlived all of her family of origin, her husband of over 60 years, and most of her friends and acquaintances. She quietly suffered from a profound sense of loss. With the exception of her family and a few remaining friends, she had lost everyone important to her.
And now she had also lost her health, and with it, her life-long vitality. Her heart was shot; it would never get any better. Nothing could be done to improve her life. And only extraordinary medical measures could prolong her life, and that for only a finite period of time.
She was a mere shell of her former self. It was time to go.
So there we were - me in all my morning glory, and Louise sitting up in bed struggling to draw breath. The congestive heart failure was filling her lungs with fluid. She was slowly drowning. I asked her if she wanted me to call her daughter, who was her main caregiver. She said, “No.” She felt it was too difficult for her children to witness, and she thought they would seek medical intervention, which she kept saying she did not want.
But as her breathing became more labored and she struggled harder to breathe, it was apparent she was suffering horribly. She kept saying, “It’s too hard. . . .This is a horrible way to go . . . I don’t want to suffer like this . . . I just want it to be over.”
She asked if there were any pills she could take so it would be over quickly. All she had was the anti-anxiety pills her doctor had given her. I gave her one, but it did nothing to calm her panic. She was dying too quickly for it to take effect.
But she was not dying quickly enough.
She needed SOMETHING to quell the panic of not being able to breathe. She begged to take the whole bottle, but I would not give it to her. If I gave her the pills, I’d be convicted of murder. AND, silly though it is, I remembered that many life insurance policies will not pay if the death is a suicide. I knew she would not want her children to forfeit her life insurance proceeds because at the end of her life she chose to circumvent tremendous suffering. (It did not even occur to me until weeks later that Louise did not have a life insurance policy.) I also knew the pills did not have time to work. She was dying too quickly. . . .
. . . but not quickly enough.
I sat next to Louise on the bed with my arm around her legs, talking to her to soothe her as best I could. I rubbed her back and neck, which felt good to her, until I started in with a deep tissue massage on the muscles along her spine, and she told me that was enough and thanked me for my efforts.
Note to Self: a little goes a long way.
Time dragged like it was pulling a ball and chain. With every passing minute, she found it harder and harder to breathe. She could feel her lungs filling up with fluid, leaving less and less room for air. She was terrified. So was I. I was, in effect, acting as a death doula, helping her make that transition from this world to the next. But what did I know about dying? All I could do was to validate her experience, stay calm, be present, not panic, and continue to ask her over and over, "Are you sure you don't want me to call your daughter? Are you sure you don't want an ambulance?"
Louise FINALLY gave in and allowed me to call her daughter. But she still nixed the ambulance.
I woke up her daughter and calmly told her to come quickly. Then it was back to waiting.
Every minute felt like eternity. I found myself surprised both by how quickly Louise was going downhill, and how long this process was taking. She turned ashen. She heaved to breathe, and I recognized what I'd heard about so many times, but had never witnessed until then: the "death rattle." One doesn't need an introduction to the death rattle; it's presence announces itself, and there's no mistaking it. She had been talking in full voice when we started this process. But as she struggled to get air, her voice began to disappear. Soon she was gasping in a whisper. And then her voice was largely gone.
Her hands got cold. She looked gray. To my horror, her eyes were beginning to roll into the back of her head. Was it just my imagination, or was she beginning to look like a struggling corpse? "This is too hard," she croaked. "I didn't want to go like this."
"Louise," I urgently suggested, "Let's do this the intelligent way. Let's get you to the hospital, let them save you and get you out of this crisis, and then we'll go on hospice. They will be able to give you morphine so that you don't have to be conscious during this process. That way you won't suffer. I promise we'll let you go, but there is an easy way to do this, and a hard way. This the hard way. Does that sound like an intelligent plan?"
Louise—or what was left of her at this point—agreed with my logic. I called the ambulance. Ten long minutes later, I was standing in the driveway, still in my pajamas, ushering them in.
The first thing the medics did was to get Louise on industrial-strength oxygen. Almost immediately, color returned to her face, her eyes focused, her brain sharpened, and the death rattle disappeared. Magical stuff, this oxygen.
They strapped her onto a gurney for transport. "Does she have a DNR?" the medic inquired.
This time, I was the one who turned white and stopped breathing. DNR?
I had just finished creating a "get your affairs in order" course. I preach the gospel of the DNR (Do Not Resuscitate). It never in a thousand years occurred to me to ask if Louise had a DNR in place.
Her daughter scrambled to the other room to look through files to see if there was a DNR among all the medical papers.
Note to Self: Next time, make sure you have these papers in order BEFORE you have an emergency.
Her daughter came up with something and handed it to the medic. As they strapped in Louise for the ambulance ride to the hospital, I ran to the bathroom and grabbed a mouthful of Listerine. As I'm gargling, I ran to my bedroom and threw on last night's clothes that were still laying on the floor next to my bed. I grabbed my purse, spit out the Listerine in the bathroom sink as I passed by at a full gallop, and started turning off lights and locking doors as I left the house.
I followed the ambulance to the hospital. As we pulled out of the driveway, I glanced back at the house in the rear view mirror. It is dark and desolate. Already Louise's absence is palpable, and we are not even out of the driveway.