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BEST TO SIMPLY BE WITH THE DYING PERSON
All the passages below are taken from the book “Final Journeys: a Practical Guide for Bring Care and Comfort at the End of Life” by Maggie Callanan. It was published in 2008.
I was blessed to be the birthing coach for my daughter as she brought her baby girls into this world. I was equally blessed to be the “birthing” coach for my parents and uncle as they left this world. They had taught me how to live, and in their dying they taught me how to die. It was the beautiful full circle of truly living this life.
ANNETTE AND SIMON
When I first met Simon, a retired army general, I was struck by the fact that everything about him, his family, and his life was so in order, so “spit-and-polished,” that there seemed no room for anything less than perfection. Knowing that the experience of dying is full of moments that cannot be controlled or planned for, I wondered if he could be flexible enough to handle his wife’s illness. Still, he clearly adored his wife, Annette, and had the financial ability to provide her with anything and everything she might want and need.
His military success was clearly exhibited by the ribbons and medals framed on the walls of their home. The old photos of him alongside Eisenhower, MacArthur, and other senior military officers—-most in battle fatigues—-spoke of someone who had looked at the enemy dead on, expected to win, and always had. But Simon could not control or defeat the fact that the love of his life was dying.
In dealing with caregivers, my basic approach is that knowledge is power. What is ahead is less frightening if it is discussed, anticipated, planned for, and understood. However, I never push information on anyone who is unsure or prefers not to know. As I have said before, I have great respect for denial, which is a wonderful crutch. Unless I have something better to put in its place, I leave it alone unless the denial is causing harm or putting anyone in danger.
I also keep in mind that while many terminal illnesses follow a predictable path, there are factors that vary from patient to patient, including age, previous state of health, mental and emotional determination, and previous treatments and care received or rejected. Each course is somewhat predictable, but it is always unique to the person.
Since Simon told me he wanted to know everything, we collaborated from the beginning on a plan to deal with the deterioration that was ahead for Annette as her disease progressed. He was receptive to this information, and he prepared as though he was going into the battle of his life—-which in many ways he was.
Annette, on the other hand, was clear that she didn’t want to know anything. “I never worry at all when Simon’s in charge, and as you can see, he always is,” she told me.
After a week or so of visiting Annette, I could see that Simon was becoming burdened with the various medicines to keep track of, meals to prepare, doctors’ appointments to keep, and chores to do. I suggested tacking a handwritten chart on the kitchen wall to help schedule and plan for some of the weekly responsibilities. Simon liked the idea. He quickly developed a strict routine. But as the plan of care changed with the course of Annette’s illness, so did the chart, and such changes in medications or other treatments require adaptability and flexibility. An untrained caregiver, particularly one who is an organized, in-control person like Simon, can soon feel overwhelmed as the “perfect plan” is modified. While I never intended the chart to be a list of rigid marching orders, it seemed to evolve into that as Simon’s need for control increased.
Annette remained comfortable as her condition gradually deteriorated, but I noticed that Simon was becoming more and more obsessed with the house and yard. He spent so much time pruning his bushes, they looked artificial. He now insisted that the bedsheets be lightly starched and ironed by the caregivers he had hired, who understandably balked at such a waste of time when Annette’s physical need’s were increasing daily. One after another, the private-hire home health aides resigned, and the constant turnover upset Annette and added to her mild confusion. She called for Simon incessantly, and he was becoming frustrated by being regularly pulled away from his “work.” “Tell her I’ll be there when I’m done,” he would briskly direct the hired caregiver.
A new chart outlining Simon’s version of the schedule had now appeared on the bedroom door, and the expectation was that it be followed exactly:
10:00 A.M.: Head of the bed up 45 degrees
10:30 A.M.: Head of the bed down flat
10:45 A.M.: Lotion on feet
11:00 A.M.: Lotion on hands
And this was hardly the beginning or the end of it! Poor Annette did not have a moment’s peace the whole day, as her increasingly limited time was flying by in the company of strangers doing insignificant “stuff” to her.
One sunny afternoon I found Simon in the backyard, wearing earplugs with a hedge trimmer screeching in his hands. “We need to regroup, Simon,” I shouted, gesturing for him to come inside. He fixed me a cup of tea and became visibly nervous, anticipating bad news, as we talked at the kitchen table.
I said, “Simon, you’ve done such a spectacular job of taking care of Annette all along. But these last days and hours are few and precious, and she has only a little time left. Do you want to spend it doing yard work while a different face every week tries to follow this intense schedule? They are always turning her, changing her, moving her, rubbing her with lotions, setting her hair, doing her nails. Some of those activities are good and comfort-producing, but rest and peaceful quiet time are also essential for her now. The schedule is just too much. What she wants and needs is you to just be with her, not strangers fussing at her all the time. Having everything look perfect does not make it perfect.”
“Want some more coffee?” he asked absentmindedly, forgetting he’d made me tea only moments before. He jumped up from the table, straightened the papers scattered in front of his place mat, and grabbed my half-empty teacup. Then suddenly he rinsed it out and put it in the dishwasher. Poor guy, I thought. This is so hard for him. He’s rushing around in a frenzy so he doesn’t have to stop and really look at what’s happening.
He finally sat down at the table again and at last met my eyes. “Is this the end?” he asked hoarsely.
“No, I think she has a few days left, but I can’t guarantee that, so I’d hate to have you miss this last opportunity to be with her. I just need to be sure you understand where she is in her journey. She loves you and trusts that you will know what’s best for her and how you want to spend this precious time.” He slowly got up and disappeared into the dining room. I quietly waited as I heard him blow his nose many times over the next few minutes.
He returned red-eyed and sat down with purpose. “You know, Maggie, the make-it-or-break-it point in a battle is realizing when your battle plan isn’t working anymore and having the courage to regroup and change it,” he said. “I just didn’t realize we had gotten to that point. Or maybe I didn’t want to realize. So, how do I do this now?”
I had known from the start just how much Simon loved his wife, but in that moment it was clear that he was even willing to shift his whole attitude when he realized it would serve her better. I was so moved. I said softly, “Let the home health aides do what they have been trained to do. Such detailed direction is demeaning. It doesn’t recognize their judgment and skills. Meanwhile, you do as much of the comfort-providing as you like. For example, I’ll bet Annette would love to have you give her gentle back rubs, hand rubs, and foot rubs. But it’s also very important just to be with her quietly.
“As she gets closer to leaving us, the thing she’ll want most of all is your presence. You really don’t have to do anything at all. Simply put a cozy chair in her room and bring in your newspapers and books. She’s sleeping most of the time now, so imagine how soothing it will be for her to open her eyes and just see you there. This will also help her not to worry about where you are and how you’re doing. She’s comfortable enough so that it’d be okay if you want to lie down beside her and just snuggle for a while. Spend as much time with her as you can. If she’s quiet, you be quiet. If she’s awake and talkative, talk with her. If she’s sleeping, take a nap yourself. That is how best to share her journey. You know her so well—-just follow your instincts about what she needs, and keep doing the wonderful job you’ve been doing.”
A week passed with Simon spending time with his wife in just that quiet, loving way. And then one morning, while he was napping beside her on their bed, Annette died so peacefully and quietly that he didn’t realize it until he awoke.
“I gradually became aware that it was just too quiet. She wasn’t breathing anymore,” he told me. “I don’t know how long it took, but I just wanted to keep every bit of her warmth close to me. I held her until it was gone. Then I called hospice to tell you she’d died.” He sadly smiled as silent tears slid down his face.
I spoke with Simon at the gathering after Annette’s funeral. “You did a wonderful job, Simon, and I know it was heartbreaking for you. But every wife should be so blessed to be cared for as lovingly as you cared for Annette.”
He openly wept. “Of course I wish she were still here, but I’m at peace that I did everything I could for her. I want you to know that we shared some of the most beautiful moments during those final days!”
One devoted and fastidious daughter named Lisa worried out loud to me about making her mother’s dying just right. “I just want this to be perfect for her!” I had already noticed the fresh floral arrangements by the bed, the sheets and covers that were changed at least daily to match her mother’s nightgown, and the soft classical music always playing in the background as Lisa’s mother drifted in and out of coma. The “Hallelujah Chorus” of Handel’s Messiah was all ready to be turned on for the last minutes before death—-which was probably still some weeks away.
“I just keep feeling like there’s something that I’ve overlooked to make this right, but I don’t know what it is I’ve missed!” she told me.
“You know, Lisa,” I replied, “doing nothing is often the right thing to do, even though I know that doesn’t help with that panicky feeling. Right now, as your mother slips in and out of coma, she’s very busy transitioning from this life into whatever comes next. Even though it may not look like it, she has a high level of awareness of what’s going on around her. She may also be having experiences that we can’t see and hear.
“Do you remember what it was like being in labor?” I went on. “Yes, I do,” she said with a laugh.
I continued, “Without the monitors, nobody can see what’s going on, and yet the mother is very focused and busy. A lot is going on, isn’t it? That baby is transitioning from the mother’s womb into this world. A laboring mother even gets a certain look on her face as she focuses inward and tries to work with what’s happening in her body.
“Now imagine if Miss Nellie Nurse had a need to be busy and tidy and kept fussing at you while you were in labor. ‘Do you want ice chips? Let me fluff your pillow. Are you hot? Let me fan you. Let’s sit up. Let’s lie down. Your hair’s a mess, I’ll comb it. You’re sweating—-I’ll bathe you.’ Can you imagine how that mother would react? I suspect if there was a chair within reach, she’d throw it at her and shout, ‘Leave me alone! I’m busy!’”
“That’s what I mean when I say that sometimes the best thing to do is nothing,” I finished. “The best way to make this perfect for your mother is to quietly be there with her and share the journey as far as you can.” Tears of relief came into her eyes, and she nodded silently again and again.
As I work with families and friends facing the death of someone they love, it often strikes me that their anticipation of how that time will be is usually much worse than it actually turns out to be. Their busy behavior is a way of not looking at the inevitable as it approaches. But when they are given the opportunity to be completely present, most caregivers are grateful to have shared those last days, hours, and minutes. A large percentage of them miss the actual moment, as Simon did, because it is so quiet and peaceful. I often hear, “I couldn’t believe it was so easy!” Many others have said, “I will never again be as afraid of dying as I was before,” or “It was the hardest job I ever loved.” To witness and help facilitate such realizations is an honor and blessing in my life.
THE BOTTOM LINE
The best way to share the journey of dying is simply to be with the dying person, sharing quiet times and gentle moments. [260-267]
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