Tag Archives: death

With Love, to the Last Breath

roses

At 6 p.m. tonight, Dad took his last breath as my brother Dean told him that he loved him, and as I read Shakespeare’s Sonnet 130, one of Dad’s favorites. To understand why my Dad loved that particular sonnet so much, you have to appreciate how he “fought for his pants” every day of day of his wonderful marriage to my mother. Not long before he died, his eyebrows lifted up, the way they would when he saw someone who delighted him, and his lips moved as if he were speaking to them.

Dad, this is for you and Mom, thanks to the Bard:

My mistress’ eyes are nothing like the sun;
Coral is far more red than her lips’ red;
If snow be white, why then her breasts are dun;
If hairs be wires, black wires grow on her head.
I have seen roses damask’d, red and white,
But no such roses see I in her cheeks; 
And in some perfumes is there more delight
Than in the breath that from my mistress reeks.
I love to hear her speak, yet well I know
That music hath a far more pleasing sound;
I grant I never saw a goddess go;
My mistress, when she walks, treads on the ground:
   And yet, by heaven, I think my love as rare
   As any she belied with false compare.

Their love was rare, and they are together again. But, dear Dad, I will miss you.

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Preparing

photo[4]

I am listening to my brother Dean in Dad’s bedroom, “I’m right here with you. I love you.” He’s telling him the story of chukar hunting with our sweet Springer Spaniels, Beall and Katie.

A little while ago I heard Maddie reading a beautiful passage from Kubla Khan, by Coleridge:

“In Xanadu did Kubla Khan/A stately pleasure-dome decree:/Where Alph, the sacred river, ran/Through caverns measureless to man/Down to a sunless sea

So twice five miles of fertile ground/With walls and towers girdled round:/And there were gardens bright with sinuous rills,/Where blossomed many an incense-bearing tree;

And here were forests ancient as the hills,/Enfolding sunny spots of greenery…”

I hope my Dad is imagining himself in a sloop on that sacred river, on his way to his mother, my mother, and his daughter, Midge. Or perhaps out in a field on a frozen morning in Eastern Washington, quietly walking through the stubble of a wheat field.

He is on his way. He took a turn for the worse a couple of days ago, and his heart – that has served him so long and well – just can’t do it any more.

I have set the table in the living room with things that have meaning: the pictures of my mother and my brothers that he has commented on so often in the past week; his college Shakespeare volume that Tommy thought to fish out; a bear from my cousin Louise and her daughter Mary; beeswax candles from my cousin Lynn and her husband, Henry; Remy Martin VSOP brandy; memory books I created for Dad; a collection of his favorite memorized passages; and chocolate, lots of it. Chocolates given by my mother and father-in-law for Christmas; Frango mints that were my grandmother’s favorites; chocolates brought in December by my friend Lisa.

Dad hears us and knows we’re here, though he cannot respond. Other family members arrive tonight and tomorrow. I don’t know what moment Dad will choose to let go; he doesn’t have any experience with quitting.

As Dale Swan, the Sutter Hospice chaplain, said to me, “This isn’t giving up. This is his victory lap after a life well lived.”

What I think I will say to my Dad is what Dad said to Mom as he held her hand, when her heart stopped on May 10, 1999: “I love you. You will be with your mother and Midge. And I will be with you again.”

We will miss you, Dad. I am so incredibly grateful for the legacy of your love in my life.

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I’m Not Alone

morning candles

It’s been almost seven years since I moved my Dad to California, knowing that his cardiac disease was catching up with him. We’ve had quite a few scares since then: a small stroke that temporarily interfered with his ability to speak, a strange seizure, numerous falls and illnesses. During one of those scares, my husband was in Mexico, unreachable, and I was alone at the hospital with Dad, afraid.

I hate being alone when Dad’s life is at risk. I can handle the decisions that need to be made. I can handle the physical challenge of the long hours. I can be strong for Dad so that he is not afraid.

But I want to be able to cry and have someone to hold and comfort me when am afraid. I just don’t want to be alone.

Yesterday my first morning thought was of all the people who are, as one friend puts it, “holding me in the light.”

In recent days, I have heard from a college friend with whom I have been out of touch in recent years. My spiritual and artistic cousin, Lynn, has become the angel who perches on my shoulder with frequent, loving messages, like this one:

Whenever I read your ardent posts as I did just now.. and look at your exquisitely poignant and palpably tender photographs.. I am reminded again and again of the Rumi stanza..  that I am sure you are familiar with but I can’t help writing:“Let the beauty of what you love be what you do.” –Rumi    

 Mostly, I want you to know this New Year’s eve that even though it may seem I am in the background I am a part of that large net beneath the high wire you are walking– where by the way, you are dazzling in your diamond light.  I am not quite breathing with you, but almost…

My dear friend, Lisa, who spent the day on the 18th hanging out with me and cooking for me, is in Italy with her family where she is lighting a candle in every church she encounters. When traveling, Lisa normally devotes her laser-like focus to something food-related, like tasting lentil soup in Turkey, but on this trip, she says she is thinking of Dad and me. She wrote:

It is making me feel slightly better — but marginally so — wish I could be with you to help you through this important time. Your dad is a great man, and you are the best daughter and friend anyone could hope for. Miss you.

Yesterday I wrote my oldest friend, Ellen, about how she had rescued me when we met as lonely adolescents. She wrote back:

I have loved walking this current path with you. I have felt your sadness and pain. I have cried with you. I have wondered, and asked, and railed with you. I have grown with you. I have deepened and broadened who I am with you. I want to be there with you, but also know that you would be caring for me, and worrying about me, while at the same time you are caring and worrying about everyone else in your life. It’s your nature.

This is a hard path. But it’s far harder on Dad as he struggles. The love and support of family and friends makes all the difference. It holds me up so I can hold him up.

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Taking Stock of My Journey with Dad

Henry Campbell Dec. 23 2012

I’m one of those people who likes to take stock and tidy up as the new year approaches. But instead of cleaning my office as I have in years past, my attentions are here on this blog. Looking at the “About” description, I realized how its content has changed as Dad has aged and weakened. It started as a celebration with a few funny bits and occasional bits of advice thrown in. I wrote from the head, thinking, how can I capture useful insights from this experience for me to remember and for others to benefit from?

Last summer, as Dad’s health began to fail, I started writing from the gut. I wrote about my experience, about feeling vigilant, not just about Dad but about everyone in my life. I wrote about not sleeping. I felt a little like a mother hen trying to keep the chicks safe in the nest.

In the process of seeing Dad start to slip, I became more aware of and grateful for family and friends, especially my amazing husband of 30 years. My post on our anniversary, “30 Years of Opposites: Happily Ever After,” became my most-read post of the year, with over 300 views.

In October and November, The Henry Chronicles took on a more somber tone with the loss of my “other mother.” In the last month, my posts have expressed my desperation to turn things around and my anger at God when I could not. Without planning to do so, I find myself writing almost daily in the quiet hour after the night caregiver leaves and my Dad calls out that he is awake and ready to get up. One morning I thought about all of the people who have been supporting Dad or me, and I said thank you to “Team Henry.”

I’m no longer trying to be smart or useful. I’m just trying to get through this time with as much strength for Dad as I can. I keen online because I can’t help it. By releasing the terrible pain and fear that comes with caring for someone in the last months of life, I feel better. Maybe it’s self-therapy, online.

I do draw great comfort from the small company of friends and followers who read my little posts and share their own experiences, or offer a supportive word. I’m kind of amazed that, in this frenetic holiday period, people are willing to read something that isn’t about the fun of the holidays.

I may be hanging on by my fingernails, but I am hanging on.

The “About” page now ends with: These days, this blog is about coming to grips with the impending end of his life, a search for faith and understanding, and a longing for strength so that I might offer him the same unconditional love that he has always given me.

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The Petty Jealousy of the Paper

Sunday papers

It’s Sunday morning and the front paper is mine. My nighttime caregiver awakened me at 5:45 a.m. saying she needed help getting my Dad to the john, which takes two people to do safely. Just a few months ago, I would have gloried in having the paper to myself for 90 minutes.

Until this winter, I rose every morning at 7:30 a.m., made coffee and stepped out on the front porch to retrieve the paper, quickly noting the weather before brushing off the grime caused by runoff from the planter.  I devoured the headlines of the New York Times, knowing that Dad would latch onto it as soon as he came out for breakfast. I was jealous of these few moments alone, when I was in control of my time and my paper, if only for 20 minutes.

Then I heard it: the snap of the brake release on his walker, the slow sibilant shuffle on the wood floor, the clink of the lever that flushed the john.

But on the days when 8 a.m. came and went with quiet, I wondered, “Is this the day?”

Fifty years after the first of Dad’s three heart attacks, I started every day steeled against the possibility that I would find Dad dead and that he would not awaken again, not ever.

I feel awfully small for that little jealousy over the paper. The prospect of losing Dad soon is no longer possibility or probability. It’s near certainty. (When you’re talking about a man who has survived Iwo Jima, three heart attacks, three open hearts and three strokes, you learn not to place bets on prognosis.)

Yesterday I read through the booklet that Sutter Hospice gives you when you are admitted, “As the End of Life Nears: A Caregiver’s Guide.” I read this:

As your loved one begins to accept his or her own mortality, you may notice that they start to withdraw physically and emotionally from the ‘outside’ world. A person who once loved television and the newspapers may cease to enjoy these activities. In addition, he/she may not want to interact with people. You may even notice a steady withdrawal from people the patient loves most. Withdrawal from the outside world is a natural part of the dying process…. (H)e/she will most likely begin to sleep more…. This is a normal process and even though your loved one is asleep, important work is being done on the ‘inside’ in preparation of the transition from this life.

I wrote to my friend Jim, “I have been worrying about him sleeping too much and becoming dehydrated. You’ve written all those great words about the descent/ascent, the bridge, etc., and I took it in but I don’t think I really thought I was there now. But that’s were we are, isn’t it? He is withdrawing. It isn’t just my brothers who have to let go. It’s me.”

And Jim responded:

Sleeping is sweet.  Think about how treasured one’s naps are.  It is just his biological body adjusting and slowing down.  It is about letting himself accept his body doing what it needs to do so his spirit can be set free.  Honey, it is the way for each of us. You are providing an environment and space for him to to do this without judgment or demands. 

It is NOT about letting go. It’s about telling him he can fly to where he is meant to go, and that you will never let go of him in your heart.  I promise you he will be in your heart until the day your spirit treks along with his.

It’s about loving him so he can let go of this human experience.

Betsy, of course you can let him be born anew into eternity.  You let your kids be born into this world. You’re helping him be born again. It is not easy; it is not without labor pains.

He is withdrawing not from you but from this reality, so he can be in another one and still be very alive in you.

Stop picking on yourself. Just be present; open your heart to everything non-rational, and be open to him claiming his own eternal destiny.  Your heart will break: love knows not its own depth until the hour of separation.  But our faith suggests Easter is an ever present reality, as he will be for you the rest of your life.

While you sleep, Dad, I’ll read the paper, but I’ll be thinking of you in your dreams, flying to heaven.

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Ceding Control

Henry Campbell, Christmas morning 2012

My dear “Caregivers’ Social Club” buddy called yesterday after taking her husband to the hospital. Acutely aware of his advancing Alzheimer’s, she had felt something was wrong and then noticed a sudden downturn in strength. She learned that he has had a slow bleed in his brain for some time.

She was filled with recriminations for herself: How could she have missed it? How could she not have listened to her growing feeling that he was “off?” What if she had figured it out sooner?

We are the careful caregivers. The careful caregivers are observant, especially when it comes to the primary focus of our attentions. We aren’t doctors but we could play one on TV. We rack up successes: bladder infections we caught early, raspy noises that turned out to be pneumonia, disabilities we were able to reverse by advocating for physical therapy. We dance in front of disaster.

Then one day, we can’t dance fast enough.

It isn’t that we don’t want to, or haven’t tried, or aren’t good at it. We’re champions at it.

We butt up against the irrefutable reality of a chronic illness that ultimately goes only one direction: down.

Crossing the threshold of hospice represented a change in care for Dad, but it also signified a change for me. Though still vigilant, I stopped fighting and accepted where Dad’s journey is going. I am putting supportive care in place so that I can focus on loving him and listening to him rather than trying to fix everything.

I am not giving up, and I am not giving in. I am giving it over. With four visits from a hospice nurse in six days, I have a clinical partnership to help address symptoms as they arise. I am coming to terms with God’s role in all of this – though I still don’t understand how this difficult process of dying is a great plan. I am beginning to recognize that I am not in control of the speed or shape of this final journey. I am no longer fighting but I am not beaten.

Today I am praying for my dear friend as she faces a difficult decision about whether to approve surgery or not. She’s a careful (and loving) caregiver, and she wants to make it right.

To C: I am with you, my friend. There is no “right decision” here and it may not even be possible to discern the best decision. I wish I could say, “You’ll know what’s best.” But that’s one of those things people say that isn’t always true. Surgery or not, the future is a bitch. You will pick the least worst of the choices ahead of you. You will keep in mind what is kind, and ethical, and what your husband would want. This is an awful decision to face, one you never anticipated and one you could not have prevented, even as careful as you are. I love you. Call me if I can help.

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Remembering Christmasses Past

christmas eve

Growing up, Christmas was about much more than the presents, decorations or food. Certainly we had all of the trappings; I remember gently hanging silver foil “icicles” over the branches of our tree, and helping Mom to place on the mantle her collection of angel figurines on a bed of “angel hair” lit from below. But at its heart, Christmas was a religious observation.

My Mom was a devout Episcopalian. We went to church and Sunday school every Sunday, and if we were sick, Mom read the week’s lessons and prayer service at home. And Christmas Eve meant attending midnight mass, which actually used to be held at midnight. When I was very young, we attended the Washington National Cathedral (I think). I drifted to strains of “Silent Night,” snuggled against Mom’s silky seal skin fur coat, surrounded by votive candles and swags of fresh greens. That distant memory of light, music, smell and touch is about as close to heaven as I can imagine.

Through the years, the scene was repeated — at St. Mark’s in Seattle, St. Patrick’s in Eastmont (near Everett) and St. Andrew’s in Tacoma.

This is a different kind of Christmas Eve. My Dad and I will be at my house, but he is not strong enough to join in the festivities at my in-laws. Much less attend Christmas Eve service. My advisor Jim reminds me, “Each moment now, even the most gritty one, is precious.”

Mom, tonight you are closer to me than ever, though you have been gone for almost 14 years. Keep the candles burning for Dad. He is trying to find you.

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The Circle Closes

Silent movies used to use a particular edit to denote finality: a circle that grew smaller and smaller until everything went to black. When Looney Tunes lampooned the technique, Porky Pig suddenly squeezed through the shrinking circle, to stutter “That’s all folks,” before popping back into Toon Town, the window closing behind him.

I’ve often thought of the end of life in those terms. The past few weeks,the circle has been closing.

With an underlying diagnosis of congestive heart failure, and the instinctive discipline of my Dad, it’s been hard to predict how the final years of his life might go. My Mom’s terminal lung cancer had a pretty known trajectory; although she was given weeks to live, she lived nearly four months, but either way – we knew it wouldn’t be long, and it wasn’t long.

Every day now gets a little tougher. Dad is growing weaker. He sleeps more, and sometimes is not strong enough to stand and walk. He is very short of breath even at rest, and eating and drinking is becoming more difficult. His heart rate is lower and becoming irregular, and his blood pressure is up. He is working hard just to breathe and talk.

So I wonder, perhaps for the first time: are we now in the final period? I won’t call it the home stretch because there’s nothing homey or relieving about it. I have been with two people when they died, and it was hard work for them, leaving this world, even with great comfort care.

A week ago, my brothers were worrying about Dad’s dignity as he left the ER with a catheter. One of them said it was “one more blow.”

Funny, as Dad has needed more personal care this week, dignity hasn’t felt like a big issue. Words from Tuesdays with Morrie came floating in to my head, so much so that I dug the book out this morning:

“Mitch, it’s funny,” he said. “I’m an independent person, so my inclination was to fight all of this — being helped from the car, having someone else dress me. I felt a little ashamed, because our culture tells us we should be ashamed if we can’t wipe our own behind. But then I figured, Forget what the culture says…. I am not going to be ashamed. What’s the big deal?

“And you know what? The strangest thing.”…

“I began to enjoy my dependency. Now I enjoy when they turn me over on my side and rub cream on my behind so I don’t get sores. Or when they wipe my brow, or they massage my legs. I revel in it. I close my eyes and soak it up. And it seems very familiar to me.

It’s like going back to being a child again. Someone to bathe you. Someone to lift you. Someone to wipe you. We all know how to be a child. It’s inside all of us. For me, it’s just remembering how to enjoy it.”

Hundreds of times, my Dad has said to me, “Everyone needs a mother.” Everyone does.

I am hoping that I can do what mothers do in these final stages: make the boo boos feel better, and chase the nightmares away.

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Summoning Angels

Perhaps the worst losses are the ones that we don’t expect: the children who die before their parents, the young mothers or fathers whose lives laid ahead of them, the mothers we expected to be in our lives for so much longer.

With these premature deaths, we wail with no less intensity than the mourners of ancient Rome, albeit through all the ways that we communicate now. Whether poured out in text messages, or emails, on Facebook or by telephone, it is awful to behold, and worse to feel.

With the loss of my “other mother” in October, I find myself compelled to unpack some Christmas decorations that I haven’t displayed in years: my mother’s angels. Back in the 50s and 60s, my mother collected small angel figurines that she displayed on a bed of “angel hair” (spun fiberglass) that glowed from the string of tiny white lights beneath. Each was lovely, but one in particular stood out: a small girl angel, clad in pink, rosy cheeked, curly haired, head bowed, hands clasped in prayer.

Angels weren’t just a symbol of Christ’s birth to my mother; she had her own little angel in heaven. Before I was born, my sister, Midge, died of leukemia at the age of four. I don’t remember seeing obvious signs of grief in my mother or father during my childhood. But much later, after my mother died in 1999, Dad poured out his heart to me. He repeatedly slapped his palm against his forehead as he described her calling out to him from her oxygen tent in the hospital, “Daddy, help me.” “I couldn’t do anything,” he said, “I went out of the room and pounded on the wall. I couldn’t do anything.”

In the past few weeks, I have borne witness to and experienced that stabbing kind of pain that comes with unexpected loss: the continuing fallout from the death of a young mother to alcoholism, the sudden loss of a joyous and loving young father, and my “other mother,” Miss Ann.

My other mother’s family gathered to make her favorite foods and set the table just as she would have, harvest colored candles arrayed on her heavy brass serving tray. My friend who lost her childhood buddy to addiction wrote a eulogy filled with beautiful stories of her wit and strength. My friend who lost her brother, the young father, raises beers to him to re-enact the fun times when they met at the Whole Foods Bier Garten. These moments were nothing like scenes from a TV drama in which survivors look beautiful while they delicately weep in their time of grief; they were – and are – red-eyed, snot-riddled affairs where people try to do something, anything, to make a terrible reality less terrible.

In reliving traditions – even privately – we summon the people we have lost, the people we feel we should not have lost. Are we hoping that their ghosts will be with us as we go through our rituals? Do we imagine that they will be near as angels, hovering over our lives? I think my mother imagined Midge as an angel, captured in the likeness of the little pink-clad figurine.

Caroline Kennedy, who knows a few things about grief, devoted a chapter to death and grief in her lovely collection of poetry, She Walks in Beauty (Hyperion, 2011). Among the poems was this excerpt from “To W.P.,” by George Santayana:

With you a part of me hath passed away;

For in the peopled forest of my mind

A tree made leafless by this wintry wind

Shall never don again its green array.

Chapel and fireside, country road and bay,

Have something of their friendliness resigned;

Another, if I would, I could not find,

And I am grown much older in a day.

But yet I treasure in my memory

Your gift of charity, and young heart’s ease,

And the dear honor of your amity;

For these once mine, my life is rich with these.

And I scarce know which part may greater be —

What I keep of you, or you rob from me.

Those who lose someone too soon know what it means to grow older in a day, and to feel robbed by the loss of someone who died before we were ready. As I pull out my mother’s angels, one by one, I call her: “Mom – whether you are angel or ghost – be with me.”

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Saying goodbye

While my “other mother” was lying in her hospital bed at St. Joseph’s Medical Center 10 days ago, in between periods of stark awareness, my mind kept rewinding and fast forwarding. I rewound to a night thirteen years ago when my mother was in a different bed in St. Joseph’s, fading in and out of lucidity following procedures that first discovered her late stage lung cancer and then sought to repair a hole in her lung so that she could go home with hospice. But I was also fast forwarding, imagining the day that I will hold my father’s hand while he struggles to leave this earth. I think that’s how it is for many people: when we lose someone we love, we also think about the others we have lost, and those who we cherish and are losing.

I almost published this journal entry from February 16, 1999 just before I headed up to Washington state. When I returned Monday night, it was the first thing I saw on my desk:

Last night, I spent the night with Mom at St. Joseph’s Medical Center. Two-and-a-half weeks into her stay, following her diagnosis of lung cancer, she was for the first time completely lucid.

At about 9:45 p.m., Mom was looking at the ceiling. I asked her if she was thinking or looking at something. She replied that she was thinking.

Over the next hour, in quiet and measured tones, she said goodbye to me. She began by saying, ‘You’ve been a wonderful daughter.’ After a few minutes, she added, ‘You’re a very competent woman.’

I realized that she was beginning to say goodbye. I wanted to tell her how much she meant to me but the words seemed so inadequate. I told her she was a wonderful mother — strong, loving and nurturing. I remember once, when I was quite old, that she had responded to my sadness by pulling me on to her lap in my Nana’s rocking chair.

I hugged her and apologized for crying. She said, ‘Why not?’ Then she said, ‘You are a beautiful daughter; now get some Kleenex and blow your nose.’

After a few minutes she said, ‘We’ve had a wonderful life together. Sons are special but there is something very important about a daughter.’  She tried to express her thoughts about what makes daughters different and struggled a bit with the right words. She said, ‘Daughters are more emotional.’ It seem to me that what she meant was that daughters are close to one’s heart in a different way.

I said to her that my brothers had been wonderful throughout her stay. I told her they had comforted her and been loving and compassionate. I told her that we had not left her in the entire 2 1/2 weeks. This seemed to surprise her. I added, ‘We didn’t think you would want to be left alone.’ She said, ‘You were right,’ and smiled softly.

She said that her grandmother was in her late 90s when she died and that she couldn’t remember how old her mother was when she died. Implicit in her remark was her consideration of the age she would be when she died.

‘It’s one of the hardest things you ever do to say goodbye to people you love,’ she said, ‘but it’s important.’

I asked her if she was worried. She said, ‘Not exactly.’ I said we loved her and would be with her every step of the way and that God was with her.

She asked, ‘How is your Dad handling all of this,’ glancing at her hospital bed and surroundings. I said that he was sad because she is so precious but that he was okay and taking care of himself. I said I would take good care of Dad.

She said, ‘I’m going to outlive your Dad,’ and then she added, ‘at least I think so.’ Then she reflected for a while.

I commented on her strength and said that we were raising another strong woman in Maddie. She agreed and added, ‘And Tommy is wonderful, too.’ I reminded her what she had said emphatically to Maddie that morning: ‘You know what? I like you.’

Finally I asked if there was anything I could do to make this easier. She said, ‘Well, one thing you can do is continue to be the marvelous woman that you are — competent, with a high level of activity, a very high level of activity. The world needs you.’

She drifted off to sleep. Not long after this was written, she did make it home with hospice. She passed away the day after Mother’s Day, on May 10, 1999. I miss her.

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