Tag Archives: hospice

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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My Back and Forth Faith

pendulum

Last Sunday, I shared how generally pissed off I was with God. If I learned anything from marriage counseling a dozen or so years ago, it’s that arguing isn’t a bad thing. In fact it’s healthy. It’s how you argue that matters. Do you argue to hurt, or to be heard? Do you listen as well as assert?

On Christmas, Maureen Dowd published a column about losing her friend Robin and Father Kevin O’Neil’s meditation on dying.

I underlined two of Father Kevin’s phrases in particular:

“A life of faith is often lived ‘back and forth’ by believers and those who minister to them.” and…

What I do know is that an unconditionally loving presence soothes broken hearts, binds up wounds, and renews us in life. This is a gift we can all give, particularly to the suffering.”

Back and forth, that’s me. At times in my life, I have felt the presence of God directly. I have asked him for what I want and need, although perhaps he heard the longing of my soul even more than my words. And He answered. At other times, we have been estranged. And recently, we’ve been fighting.

Although it appears Dad is not going to rally – as he has time and time again – he is comfortable, and I am settling in to his new reality and mine.

As friend Jim says, “So glad you are ‘turning it over’.  Remember, the descent (which I prefer to call the path to ascent) is like going down steps of a stairs.  Sometimes one by one, and sometimes several.  Nothing you can do about this but be present and loving.  It is nature and his human body with his spirit trying to discard it so it can move forward.”

A prayer, then:

Help me, God, to be fully present

Help me to feel calm so that I can calm my Dad

Help me to radiate so much love that it warms him to his toes

Help me to support the others who love him on this awful journey

Help me to understand

Help me to love

Help me

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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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Dear God, You and I Need to Talk

Dennis Armstrong, the Sutter Hospice social worker who comes by after you’re 24 hours “in service,” asked me, “Does your father have a faith or belief system?”


godtalkstoyou.com

It’s complicated. You see, Dad says conflicting things. On the one hand, he says that he wishes he could believe in God but he doesn’t. On the other, he has talked about seeing Mom after he dies. And about how God let Mom down when she was dying. “I’m afraid,” she said at one point in her illness. If there is a God, Dad wondered, how could he abandon her in her moment of need? I’m sure he was also flashing back to losing my sister, Midge, to leukemia at four years old. He used to talk a lot about the pain of losing Midge. It’s even harder to understand God’s hand in that one.

My beef with God is different. I understand that it’s really hard work getting born into this world; I have the mental scars from back labor to prove it (thanks, Maddie). I don’t think it’s fair to work so hard to get out of it. Why do people have to become feeble and go through pain and discomfort before they make their exit? Did God figure that people would just hang around too long if it was pleasant at the end, and end up overpopulating the world?

I realize my own relationship with God is a little iffy right now. I usually talk to God when I go to bed. I thank Him for the amazing people and things in my life, and I ask him for what I want and need. Releasing Dad has long been a prayer of mine.

But I’m a little bit pissed off this morning knowing how tough things are for Dad right now. I’m working on it, God, but I really don’t understand how this is such a great plan.

An old family friend, Bruce Wheeler, shared a favorite Bible quotation of his: Rom 8:31 “If God is with me who can be against me?”

Are you with us God?

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I’m Dreaming of… Strange Things

Dreamscape in Cappadocia by Betsy Stone

I have not been dreaming of a white Christmas.

My friend, Collette Johnson Schulke, pays close attention to dreams in her own journey as a caregiver. I don’t think you need a psychiatrist to interpret several of my recent dreams:

  • I boarded Amtrak to San Francisco, and knew that my husband was already aboard. But the train was already so packed that there were no seats so I couldn’t sit or even be in the same train car as he was…
  • I was in a city downtown and I had to get from one high-rise to another high-rise. The only way to do it was to walk a tightrope….
  • I was a journalist writing a story about mining operations deep underground. I went down 24 floors and entered a hatch (like that on a ship) and saw people in suits intended to protect them. To my left, a team was doing a safety drill in which they had to jump off a ledge in a weighted wheelchair, drop the 10-12 feet to the stream bed of an ice cold underground spring, and roll across before emerging up the far sie — a test of their ability to survive without oxygen in extremely cold conditions.

Hmmm… let me see… facing extreme conditions… feeling like I am walking a tight rope… and feeling sad that there was no room for me or proximity to my husband. Gosh, what could these dreams mean?

Hospice came aboard yesterday. No such dreams last night. I feel much better about Dad getting what he needs, and me, too.

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Dear Hospice, Thank You

Dawn in Sacramento

My father was admitted into Sutter Hospice today. All at once, I was sad and relieved. As my brother, Dean, said:

Glad to hear this. Don’t exactly feel like celebrating but definitely relieved to know we will be able to manage his symptoms better.

Exactly. I wish this wasn’t something we wanted or needed for Dad, but I know hospice will provide him with the best possible care.

Several people have asked, “What does hospice give you that you couldn’t get without it?”

Frequent nursing visits in the home so that you don’t have to drag your loved one to the doctor when symptoms develop. Medications (more types, and stronger) that work better for symptom control when you can’t fix the underlying problem with surgery or  procedure and physicians aren’t worried about long-term consequences. Equipment that helps to prevent more pain and problems, rather than address them once they’ve developed. 24/7 access to telephone advice from a nurse who is really knowledgeable about serious illnesses. Some volunteer support for respite. Professionals who visit with the person who is ill and his/her primary caregiver(s) to provide moral and spiritual support. In short, a whole gang of people who actually talk to each other so that you don’t have to chase down the support you need.

I’m not ready to think about “the end,” but I know it’s not in the distant, unimaginable future. I know hospice is a comprehensive form of care that will help to make my Dad’s present more worth living.

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Dear Hospice – A Plea

At the table with Henry Campbell

Dad’s still got a smile on his face in this picture, but if you know him, you can tell it’s a little more forced. I’m writing you – dear hospice angel – to say that I hope you will admit Dad into your program this week. When I’ve raised the possibility, every clinical person I’ve talked to this week has gone on at some length about how hospice isn’t what people think: it’s not “giving up”; it’s not stopping care. Then they explain that hospice is better care.

The thing is, my brothers and I know that. My mother was in hospice care for late stage lung cancer from mid-February until May 10, 1999. We know what you can do. We know why people donate to hospices: you may not be life-saving, but you are quality of life-saving.

I want to be able to step back from trying to figure out how to make Dad comfortable and just be his daughter. I know you will be a hell of a partner in this. This is what my dear friend Jim Jennings wrote me about the task ahead of me now:

All you have to do is just be with him — the Hospice team will keep him comfortable.  Keep this image in mind:  you can hold his hand and mother/daughter love him all the way up to the bridge over the river of life, but then he has to let go of your hand, and you of his, so that he can walk over that bridge on his own with his back turned to you and this world you share, into the world you will share together in eternity.  Tis the way for all of us.

He may, like others sometimes do, dwell on the bridge for a while, seemingly here and seemingly not here.  Some folks take their time.  If he gets to this point, just keep telling him you love him and it is OK to go — that you and your brothers will be OK — very important each of you tell him at some point it is OK for him to be on his way. Stay focused on each day and the little things.  You know, you have to help birth him into the larger life. Turn it all over to Love Divine.

Life is really hard for Dad right now, and it’s getting more painful. He struggles for breath most of the time, which is making it harder to eat and drink. His heartbeat is irregular despite being controlled with medication; it’s working awfully hard. He can still walk with his walker to the kitchen table in the morning, but by the end of lunch, he isn’t strong enough to do so. He hasn’t been strong enough to stand and step over the four inch threshold of the shower for two weeks. His beard is growing in mostly white because he’s too tired to shave: something a Marine Corp Col. Ret. hates to skip. By afternoon, transferring to the wheelchair or the John is a bear. He’s eating less chocolate cake. If you know Dad, that’s the biggest indicator of all.

I talked to Dad yesterday about whether he wanted to seek admission into hospice. His comment? “Makes perfect sense.” He has been saying since summer that he feels he is finished here. He asked, “Do we have any unfinished business?” No, and neither does he. He told me this week that he has lived a good life and “done some things right.” He’s always grateful and surprised that I am here for him, 100%.

But that’s his legacy. He loves me unconditionally, and always has. I love him back the same way.

Dear hospice,

Please help me love my Dad, now, the way that I want, by supporting my brothers and me in caring for him.

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Singing Mama Home

In the initial weeks after my mother was diagnosed with cancer in 1999, I wanted to comfort her as she drifted in and out of lucidity. I remember sitting quietly by her bedside at the hospital, holding her hand. My first instinct was to try to sing to her since, all through my early childhood years, so many of my memories were accompanied by her singing. But confronting her impending death, I couldn’t sing. Each time I tried, I choked up.

Music was, and is, inextricably linked to my attachment to my mother. When I was a little girl, my mother would tuck me in and sing me our family lullaby, “Jesus Tender Shepherd.” She would turn out the lights, and leave the door ajar. Through the crack in the door, I heard the murmur of our settling household. But instead of sleeping, I often lay awake. After a half hour or so, I’d get up and tell Mom. Again she would sing,”Jesus Tender Shepherd,” turn off the lights, and leave the door ajar. Sometimes, there was a third or even fourth cycle before she became completely exasperated.

In my mother’s twilight moments, I wanted to bring that comfort to her. For several weeks, I continued to try to sing to her. And one day, I found I could do it. As agonized as I felt while watching her slow departure, I finally had the control to sing. I sang that childhood lullaby then, and later when we celebrated her life.

This past weekend, my ‘other mother’ completed her journey on this earth. The family, and those of us who are extended family, didn’t see it coming. But her medical setbacks turned from a trickle into a cascade, and finally into a flood that she could not overcome. And yesterday, I found myself by her hospital bed with my best friend and her sisters and brother, trying to find a way to comfort my ‘other mother’ as she did the hard work of letting go.

That afternoon, we had attended a vocal choir concert by the Adelphians of the University of Puget Sound, which they ended with their traditional finale, Stephen Paulus’ “The Road Home.” I started crying as I listened to the lyrics:

Tell me where is the road I can call my own, that I left, that I lost, so long ago?

All these years I have wandered, oh when will I know, there’s a way, there’s a road that will lead me home?

Rise up, follow me, come away is the call

With love in your heart as the only song

There is no such beauty as where you belong

Rise up, follow me, I will lead you home

After wind, after rain, when the dark is done, as I wake from a dream in the gold of day

Through the air there’s a calling from far away, there’s a voice I can hear that will lead me home.

Rise up, follow me, come away is the call

With love in your heart as the only song

There is no such beauty as where you belong

Rise up, follow me, I will lead you home

Hours later, reflected in the hospital’s dark oval window, we gathered around an unquestionably beautiful woman who had loved us, chastised us, teased us, cheered us, cried for us, and stood up for us. My best friend, her daughter and I sang “The Road Home.”

As I remember it, just as we finished, my friend’s sister noticed that something had changed. Mama’s hand felt different. Then she didn’t take that next breath. She was gone.

Our quiet vigil was interrupted by a rush of awareness, then panic and confusion. Filling the void came the impulse to sing. And what came to mind was the lullaby that my mother sang so often to me. This time, I could sing it, joined by my best friend. We sang Mama home.

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