Tag Archives: seniors

Before I Die, I Want to ______________

That’s what TedX Sacramento asked participants to write on a big blackboard on Friday.

My best oldest friend recently reminded people what I used to say when we were teenagers. I told her I wanted to be wise. Maybe I thought that would be an admirable answer. But now that I am where I am in my life, I think it’s still a pretty good answer.

I spent a lot of time in the past 7 years with someone I considered very wise, and wisdom turned out to be something different than I imagined.

My father, who died in January at the age of 96, didn’t offer his opinions, although his were well informed by experience. He didn’t try to demonstrate how much he knew, although he was well educated and read broadly. He was patient, and humble to the point of self-effacing.

And to much of the world, he was invisible.

This, to me, is one of the great tragedies of our time: that we live in communities with more and more old people, and we mostly ignore them because they are seen as no longer beautiful, not useful as a source of social connections, don’t get the inside jokes, and – horror of horrors – they are not fast. They take too long pulling out of parking spaces and writing checks at the grocery store. Their stories can’t be condensed in 140 characters.

Until his last few months of life, my Dad was capable of listening with great empathy, as if he had nothing more important to do than to listen to my problems or those of others. And maybe that’s the point, he really didn’t have anything more important to do. He was able to devote 100% of his attention to anyone who was sincere and making an effort.

His wisdom was dispensed in stories, not just the ones with successful endings, but the things that caused him pain. Through these stories, he conveyed what really mattered: family, accountability, bravery, loyalty, integrity.

We have time and money to address childhood poverty, as we should. But there seems to be no moral outrage that one out of five of seniors in California is living in poverty, according to the supplemental Census bureau measure that factors in the cost of medicine, which is not an elective expensive for seniors. One in ten seniors doesn’t have enough food to meet their needs.

Seniors may not hold the future, but they may help us to live our future better. With their wisdom, maybe they will help us to avoid a few mistakes, or to correct a few that we’ve made. If only we can unplug from our social networks and pause from the demands of our lives long enough to notice the precious resources who lie hidden among us.

[I’ve never cross fertilized my blogs before, but this one seemed relevant to readers of both The Henry Chronicles, and local nonprofit followers who read Philanthrophile.wordpress.com. This post was originally published there on Sunday.]

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Our Common Cause as Adult Children

Dad bird hunting

You won’t find this blog post until you’re ready to think about what we have in common: the sometimes-painful, sometimes-rewarding responsibility for caring for a parent during their “golden years.”

The senior years can be tremendously active and exciting – a period of freedom after a long life of work. But for our parents and most of us – yes, us, too – there comes a period when the world shrinks.

Our job, if we love our parents and choose to be involved, is to make their passage during these years as good as they can be.

Almost every day, I stumble across someone who faces their parents’ elder years with trepidation. It happened again this morning, walking with a neighbor.

These are the truths I hear over and over again:

  • Parents don’t want to be a burden; they actively wish to die in their sleep or go quickly, and don’t want the adult child to feel pain over their departure.
  • Parents often live near their lifetime’s worth of friends, while their children are sometimes states away. Adult children worry how they will provide the assistance needed when one or both parents need more help.
  • One sibling bears most or all of the responsibility for looking after their parents.
  • Often, there’s a sibling or sibling’s spouse who is not on the same page about what should happen.
  • We feel drawn and quartered. We may face pressure at work or be trying to support our young adult children or spouses through rough patches in their lives even while we are trying to pay more attention to our aging parents.
  • Having candid conversations with parents about their intentions, physical limitations and financial preparedness is very, very difficult. Few aging parents are realistic and proactive, leaving adult children to worry about whether (or when) they will have to step in and take over.

I learned some truths of my own along the way, truths that surprised me. I fully expected Dad, who had advanced heart disease for more than 50 years, to go out with a big bang. Instead, he rallied over and over again, never quite recapturing the ground he had lost, but persisting even so. He lived at least 15 years with congestive heart failure.

I also learned that quality of life didn’t depend on the things he thought it did. His perspective changed with time, and he was able to be pretty satisfied even though Mom was gone and he couldn’t hunt, fish and enjoy the outdoors as he once did. His world was small, but there were people in it who loved him.

I learned that Dad’s long decline was an important time for him in coming to terms with regrets. He regretted that his father wasn’t more interested in him. He regretted that he couldn’t save my little sister when she became ill with leukemia. He regretted that he couldn’t protect my mother from feeling afraid during her terminal illness with lung cancer. Eventually, those regrets ran their course and were replaced by peace.

I learned that I could give him my love and attention without resentment, even though it meant living my own life in the very slow lane.

I learned that I could have a far deeper relationship with Dad after my Mom’s death than we ever had before.

I learned so much from the last seven years caring for him.

But I understand the fears of those who stand at the precipice of their parents’ old age, wondering and worrying how they will handle it. All I can tell you for sure is that it won’t go quite the way you expect it to. There will be parts that are harder, but there will also be surprising gifts.

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With Dad Gone, A Void (Part Four)

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Napping…

To start at the beginning of this little series, click here.)

Now that I am home, really home, after Dad’s death, I am coming to terms with my identity all over again. Carol Mithers wrote a very poignant essay in the New York Times entitled, “Suddenly, They’re All Gone.” Instead of being relieved when five years of caregiving for her mother-in-law, then her father-in-law, then her childless aunt and finally her mother died, she felt worse. She concluded, “While you’re caring for the old, you can’t believe what you’re called on to do and where you find yourself, can’t believe that your time with them will ever end. Then one day, it just does.”

As Dad became more fragile, and I became more vigilant, caregiving did become all consuming. I was neither angel nor martyr; like Carol, I had my days when I lost my temper when Dad locked on to something about which he was dead wrong. But many times, it was a pretty zen experience.

Dad always asked me if I got tired of walking with him or hearing his bits of memorized poetry. I could honestly answer, “Never.”

I miss it.

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Naked Shredding and Other Awkward Retired Moments (Part Three)

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The project plan and portfolio of materials for Friends of Hospice (design by Pat Davis of Pat Davis Design)

(To start at the beginning of this little series, click here.)

What came next was… a whole lot of nothing. I had cleared the decks in anticipation of Dad moving to California, but he was hesitating. Even though he had already made THE BIG MOVE out of the family house three years prior, he was now nearly 89. Moving sounded so daunting: packing, change-of-address, changing doctors, etc.

I no longer had to check my Blackberry constantly for new texts or messages. My phone wasn’t ringing, and I didn’t have to coordinate my calendar through my assistant.

No one was looking for me, needing my input or approval.

I found out, as many retired caregivers do, that you are not quite as essential to the world as you thought you were. The void of your departure quickly fills. You find out who your real friends are.

I enjoyed walking in the cool of the mornings in Davis. I started going to yoga. And I began cleaning out my house with a vengeance.  I started tackling old papers, many of which needed to be shredded.

During those early days, with Maddie and Tommy off somewhere, and Todd at the office, I began to question my old routine of showering, blow-drying hair, dressing and putting on a little makeup. I dropped hair and makeup.  Who was going to see me? Then I started skipping showers on some days. Who would notice? And one day it just seemed stupid to dress. Why dress if no one could see you? It just adds to the laundry.

Which led to the naked shredding incident. There is something that just seems wrong about shredding with nothing on. House cleaning or cooking without clothes seems okay, but to shred just seems unhygienic.

“What are you doing,” I asked myself. I wrote my friend Jim – my mentor even then – about my crisis of productivity. How would I measure the value of my days without project assignments and milestones, without output? He counseled me to just breathe and I would figure out what I was meant to do.

I breathed all summer.

Then in the fall, with Maddie installed at college, a thought bubble appeared above my head. I had the rare opportunity to use my skills to further a cause I cared about, without having to charge for it. And I cared a lot about hospice.

My mother had the bad fortune to be admitted to a hospital on the weekend. Three physicians were involved in her care, no one seemed to have any idea what was planned, and the nursing staff was reluctant to “bother” a doctor when Mom “sundowned” and became deeply paranoid. I asked the nurse manager to arrange a meeting with whatever physician agreed to be in charge.

Mom’s doctor came in, sat at the conference table, and said, “Your mother is terminal. It would be kinder for all parties concerned if she winked out right here in the hospital.” Then he rose.

“We’re not done,” I said. I explained that we were under no illusions about her prognosis. But she was scared. And we wanted her to be able to die at home, with hospice.

Another doctor took over her care, one who was on the same page with us.

I knew then that hospice – still, after two decades – was poorly understood by lay people, and worse, by doctors. Having been responsible for communicating about a hospice program early in my career, I knew that hospice was not “giving up.” It was better care, more caring care. I knew my mother would want to be at home, looking out on her garden as it bloomed in the spring, surrounded by familiar things. Hospice was our best shot at being able to let her die at home, in comfort.

I offered to develop a pilot program under the auspices of the California Hospice Foundation to raise awareness of hospice among consumers. The “Friends of Hospice” public relations campaign was implemented successfully with the cooperation of three hospice programs and CSU Chico’s Tehama Group Communications in Chico, CA.

Sometime that fall, I talked to Fr. Greg Bonfiglio, president of Jesuit High School, about my transition. He asked,”Have you ever thought that perhaps you are being called to this work?”

Even after Dad moved to California in March 2006, I found that I still needed something beyond caregiving to provide meaning in my life. Maybe it’s that his needs weren’t that demanding. But I suspect more of it is what Mom recognized when she made her hospital bed speech and said that I was “competent, with a high level of activity.” It’s who I am.

As when Maddie and Tommy were young, I couldn’t completely let go of my own needs and focus only on theirs. Maybe it’s selfishness.  Some would certainly say that it is. I have a Puritan work ethic without the Calvinist self-loathing (as Dan Pallotta recently described it in his Ted Talk).

I wanted to make a difference in Dad’s world, and keep contributing to the broader world. That stake in the community was a source of strength that sustained me through the very hard times.

Next: What happens now, when the merry go-round of caregiving has stopped?

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The Journey of a Caregiver Begins (Part Two)

My awesome retirement party (planned by Samantha Smith) included Polaroid party pics signed by colleagues and boss

My awesome retirement party (planned by Samantha Smith) included Polaroid party pics signed by colleagues and my boss

(To start at the beginning of this little series, click here.)

Today, I stumbled across something I wrote for myself in 2005, shortly after my “retirement” (I have no recollection of writing this). It feels a little weird to find a time capsule like this one, written as I took my first steps into my new “retired” life:

Whenever I reach momentous personal decisions, it always seems to follow this pattern.  People tell me they are taken by surprise, that they had no inkling I might be considering such an action.  I surprise myself.  Thoughts may be gestating but I often have no conscious awareness of them.  Occasionally, I’ll experience a fleeting thought in the shower, or driving.  They usually come when I am at ease, when I have not even named a problem, much less become engaged in solving it.  Then, up through the depths, it dawns on me:  maybe it’s time to make a change.  In the first few moments, I roll the idea around, feeling its texture.  I’ll speak of it casually, almost as if stating a whim.  Once spoken out loud, I add to it, refine it.  It takes shape in the moment.

Just this kind of process led to my decision to leave the world of work.  With a problem that wasn’t named, but a solution found, I am doing what I often do:  getting comfortable after I’ve decided to act.

Over the weekend, Todd said to me he had purchased a printer/fax machine to go with our new computer.  I snapped, “That’s my computer, not our computer.”  For the past 15 years, maybe longer, I’ve had a laptop computer that has followed me everywhere.  I’ve anthropomorphized these sidekicks, even naming one, “Lappy.”  There is no piece of equipment upon which I have been more dependent, with which I feel more natural, than my personal computer.  It captures my addresses, remembers my appointments, serves as the slate for both memos and my internal process of reflection.  I’ve stored information about our stocks, written holiday letters, inventoried my father’s house, created itineraries for far-flung trips.  I’ve transcribed prayers, written customer service complaints, captured quirky horoscopes. I used a laptop to capture the words my mother found the strength and heart to say from her hospital bed, while fighting the twin demons of cancer and dementia.  My traveling PC has been a loyal and hard-working appendage.

I am just beginning to understand what I have exited.  First, there are the messages of the farewells.  I was surprised at the heartfelt message from my boss.   Rather than the obligatory “with regret, so and so is leaving the company after X years of service to concentrate on her personal life,” he chose to recognize some of my style proclivities we had occasionally argued about:  “…she will be equally missed for her leadership of people – caring about their development, demanding and rewarding top performance, and demonstrating (our) values in the context of creating a great work environment.”

As the news spread, e-mail greetings poured in like pebbles — some smooth and efficient:  “Your leadership has made many lasting contributions.  You will be missed.” Other messages were strikingly personal: “I am occasionally surprised at how much time it has taken me to work out from under the loss of my Mom last Christmas, even after her long illness.  The only thing that I’m certain of is that no matter how much time you spend, or how many things you do, or how close you come to ‘getting it right’ in dealing with family stuff, I haven’t met anybody who doesn’t wish they had done one more thing, said one more thing or made one more special time happen.”  Another wrote:  “I also find myself prioritizing my life and the things that are important to me.  As you may or may not know, I have just undergone radiation treatment for throat cancer and it has really made me stop and think – and who knows – I may decide to hang it up sooner than later.”  Still another:  “I think of jumping out of the work-for-pay race often.  I’m now painting a lot and I have paintings in a few galleries.  I often wonder what would happen if I could devote more time to painting.  I get great responses… that they are joy-filled.  Lots of color helps.”

In some of the messages, people explained that they had reached a conclusion similar to my own, that – if you have to choose – it is one’s teenagers that require your presence most:  “I started this job when my son was three months old and I am having the time of my life.  I was torn when I received the offer and so talked with all my professional women friends to see how they managed this work/life shift.  So many said, ‘Oh stay home if you can… you’ll miss it otherwise.’  I was surprised.  But I kept digging and another story began to emerge.  One of my colleagues very wisely told me that she found her kids adapted incredibly well to her work schedule when they were little, but she has cut back to part-time now that her daughter is 13 years old.  She believes her kids need her much more now than they ever did before.”

So far I have been credited with wisdom, character, selflessness and inspiration.  Why, then, don’t I feel that way about it?  What I know, that others do not, is that many of my decisions have been based on ambition and fear, supported by a healthy dose of self-justification.  I am not wearing a hair shirt here, nor engaging in self-flagellation.  In a message to my team, I wrote:  “I’m not doing anything heroic.  For nearly 25 years, I have vigorously pursued achievement and learning.  I was promoted during the sixth month of my first pregnancy and met with my boss while in the labor room; six weeks later, I was back on the job.  The desire to keep going was paramount.  Now I am selfishly following another desire.” 

Both subtly and more obviously, I have also been motivated by fear.  After leaving one company and promising to take time out for a while, I found myself accepting my current position after just one month off.  It was a great opportunity that seemed too good to pass up, but I also feared the quiet time in between.  Where would I be without the structure of my work life?  More deeply, there are things I have been afraid to commit to – even to speak of – such as my interest in writing.  What would happen if I just tried to write?  Had to write?

Though the analysis may be right in the long run, I understand my colleague’s desire to justify her decision to work now, when her children are young.  Hearing that children need you most during the rocky teenage years is an answer I was hoping to hear, even as I wondered about the long-term consequences.  We are all engaged in a giant social experiment to try to find the best way to raise healthy children.  Children can be healthy and happy with working parents, or stay-at-home parents.  That’s not the point.  The challenge is in knowing what will turn out to have the very best result for one’s own children.  No one, not even me, knows whether I have made the right decisions.

From four sources came wagers.  Even my brother wrote, “Sure, but the real money is on how long it will last before you get the itch again  J”

And a few carrots were dangled:  interest in consulting, sitting on corporate boards, “let me know when you decide to re-enter.”

Talking with an old friend over the weekend, he noted that he and his wife were considering a similar decision.  She has risen to the top financial position in a large corporation.  If she leaves, they both acknowledge, there will be no going back at the same level, or for the same pay.  In today’s environment, skills rust quickly, resumes mold, and reputations fade.

If one thing doesn’t work, I usually have another option half-lined up in the wings.  This time I have no such fallback plan, and I think it’s important that I keep it that way. 

I have exited, and now I stand at the border of whatever is next.  For now, I am firmly fixed on just noticing.  I am an observer of my own experience.  As Jose Saramango wrote in Journey to Portugal:  “(M)ay I learn in passing from one land to the next to pay the closest attention to the similarities and differences, whilst not forgetting… that a traveler has preferences and sympathies….”

That was me in June 2005.

If I had to do all over again – leave my job and care for Dad – I would do it in a heartbeat.

Next: naked shredding and other awkward moments adjusting to retired life.

At the management team farewell, gifts included this valise packed with well wishes

At the management team farewell, gifts included this valise packed with well wishes. They couldn’t have been more right about the beginning of a journey.

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Identity Crisis! (Again!) Part One

My Dad and our friend, Peggy Woods, at our Tacoma "house cooling" party, 2002

My Dad and our friend, Peggy Woods, at our Tacoma “house cooling” party, 2002

My Dad always said that he felt like he had several lives: his formative years up to joining the 5th Reserve Officer’s Commissioning Corps in the lead up to WWII, his career in the Marine Corps, his civilian life, living and working in the Pacific Northwest, and the 14 years of his life after Mom’s death.

Yesterday, my dental hygienist, Mary, observed that women have an easier time adjusting to old age because we go through so many physical changes in our lives: first raging hormone fluctuations and cramps as we enter adolescence; then the inflation of our bellies to near-alien proportions during pregnancy followed quickly by the transformation of our breasts into feeding machines; and finally a return to raging hormonal fluctuations accompanied by night sweats, belly fat that seems to reproduce overnight and the growth of random wiry hairs on our chin or necks. Even they never have children, women usually get two out of three of those changes.

Men, Mary holds, never face the ego challenges of appearance and body changes that women do. Their egos can’t take it when they go from captains of industry to invisible old men.

Mary may have it right as far as some men are concerned (although it certainly didn’t apply to my Dad). But I certainly took a blow to my identity and my ego when I retired to care for my Dad, and I know many caregivers who have gone through a similar transition. And now, with Dad newly gone, I am finding I am having to redefine myself – again.

Let me back up and talk about my initial transformation into retiree and caregiver.

I had lost my Mom to late stage lung cancer in 1999, and the words of her last lucid speech to me – from her hospital bed – echoed in my mind. After more than two weeks of being out of it, she began talking quietly to me about 9:45 p.m. I wrote her words as she slowly said them on a scrap of paper. For almost an hour she told me what I had meant to her, shared her reflections of me as a person, talked about the special importance of daughters, and asked how my Dad was “handling all of this,” taking in her surroundings with a glance. She said, “It is hard to say goodbye to people you love, but it is very important.” When I asked her what I could do for her, she said, “You can continue to be the marvelous woman that you are – competent, with a high level of activity. The world needs you.”

In 2004, I knew that time was marching on for my Dad. Just one year before, he suffered a major stroke, and I was all too aware of his cardiovascular surgeon’s prediction that Dad’s arteries would begin to clog after five years. Which was right about then.

Maddie was beginning her senior year and would soon be off to college. Tommy was in 7th grade, in the midst of a difficult adolescence.

Having already lost one parent, I was all too aware that this time with my Dad would never come again. I would be Maddie and Tommy’s Mom for many years to come, but the window of time to be a daughter, to enjoy my father, would close forever.

Much has been written of late about Sheryl Sandberg’s advice to women to “lean in.” For the first 10+ years of my career I leaned in. I didn’t lean in so hard that I was willing to permanently relocate to other cities (not feasible for my husband’s second-generation company), but I took every promotion I could. I started my MBA when Maddie was one year old, and I worked full time while I completed it. I made vice president in a major company by the time I was 33. I became president of my national professional society. I was recruited by a national company and got to write my job description for a senior level position at another.

After Tommy was born, I would have to say that my career advancement strategy resembled bobbing in and out more than leaning in. For three different companies, I built up enough credibility to cut back to part-time, all in search of the elusive work-life balance. Cutting back to part-time always came with a cost – and I am not referring to compensation. But I had the reputation, the access to leadership and professional skills to get done whatever I needed to get done. I respected the people who worked on my team, and loved supporting their development and careers.

When I resigned, I fully expected Dad would be gone within a few years and that I would return to the workforce after that.

Although I cleared my plate in readiness for Dad to move down, he was dragging his heels a bit. Maybe when it cooled off in Sacramento. Maybe in the spring. He eventually relocated in March of 2006.

Tomorrow: words to myself in June 2005, “The Journey Begins”

Ahead: what it was really like to transition from career to retired caregiver

Farther ahead: what it’s like to suddenly STOP being a caregiver after Dad’s death

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“Fathering” and mothering

Henry Campbell and Madeline F. Stone

As rich as our language is, sometimes it lacks the just-right word. Often, in my father’s final days, he said as I helped him, “Everyone needs a mother.” When we “mother” someone, we watch over them. But when we use “father” as a verb, it means to procreate or found.

When I say my Dad “fathered” me, I am not trying to clarify my paternity. He was an actively loving Dad. When I was very small, I know he played those little games that help children discover their fingers, toes, mouth and nose: “this little piggie,” “mousie in there,” and my favorite, “Tom Tinker, eye blinker, nose smeller, mouth taster, chin chopper chin chopper chin chopper!” (This last delivered with a final tickle to the chin.) Oh, and he played a mean knee jouncing game called, “Hobbledy hoy.” Though my toddler days are pre-memory, I know he did this because I later saw him automatically repeat those games, with his first grandchild, Sandy, and later with Maddie and Thom.

As he did with my brothers before me, Dad inspired a love of reading. What better feeling than sitting in his lap or snuggled in bed as he read aloud from “A Child’s Garden of Verses, “Friendship Valley,” the L. Frank Baum Oz series, “The Wind in the Willows,” or “Winnie-the-Pooh?” It doesn’t surprise me that the photo Maddie has resurrected and featured on her Facebook page is one of her Papa reading to her.

Unlike his father before him, he believed in sharing with his children the things he was passionate about. Though I never took to fly fishing and hunting for upland game birds the way my brothers did, there was always a spot for me if I wanted to go. I remember one hunting trip in Eastern Washington vividly. Dad cobbled together an outfit for the freezing temperatures: someone’s outgrown Filson trousers, insulated socks, boots, base layers, ski sweater, hunter’s black-and-red checked coat, wool hat and gloves.

We arrived while it was still dark — and very, very cold — at one of the stubbled wheat fields made available through The Family Hunting Club near Othello, WA. I had chosen not to shoot, so I crunched through the frosty field trailing Dad as one of our faithful Springer Spaniels worked ahead of us, seeking pheasants to flush from their hiding places. Eventually I was tired (of course I was, it was early and I was a teenager) and wanted to rest. Since cruising around in a field that is being hunted is not a great idea, Dad planted me in a spot on a ridge and told me to STAY THERE.

Lying in the barren field, making clouds of my breath, tuning in to the quiet music of a rural field, I watched the sky slowly color the thin winter clouds. My brothers don’t think I share the same awe of the outdoors that they do since I didn’t partake in the hunting part. But I do. My love of the outdoors is based on appreciating the poetry of the landscape and the creatures big and small that inhabit it. When we lived in Seattle in early grade school, I could entertain myself for hours lying in the abandoned street that connected 10th and 11th Avenue East, or perched high in a tree in Roanoke Park at the top of the hill. I never feel alone when I am in any place where there are growing things – a field, a forest, a garden. I feel connected. And I think that’s thanks to my Dad, who, to the end, cited bits like this one as he admired the Camphor tree down the street on our daily walks together: “This is the forest primeval. The murmuring pines and the hemlocks, Bearded with moss, and in garments green, indistinct in the twilight, Stand like Druids of eld, with voices sad and prophetic, Stand like harpers hoar, with beards that rest on their bosoms…”

Dad was my first and best advisor and mentor. I was annoyed in high school when he made me take typing (this was before knowing the keyboard was the gateway to computing). He explained that I might need to support myself some day. As a college upper classman, he made me identify careers in which I might be interested, and then set up some informational interviews for me. I felt awkward, even mortified as I had lunch with him and a PR guy from Weyerhaeuser. But he gently nudged me from the nest. After I started my career, it was Dad who I called when I needed to negotiate a salary or faced a delicate situation, or when I wanted to share the good news of a promotion or salary increase.

(Mom was less than thrilled as my career advanced. In her experience, given her marriage during the beginning of WWII, a career was at best an interference or at worst a threat to one’s job as a wife. In the early years of my marriage, she met the news of one promotion with stony silence, and finally blurted out, “What I want to know is: when are you going to become a real woman?” Translation: when are you going to have children? Todd, standing in the kitchen while I talked, saw the expression on my face and wisely left the room before I exploded over the phone back at her.)

Much later, I asked Dad why he was so supportive of my career. He said that he never wanted me to feel trapped, as his mother did. In other words, if Todd proved to be the kind of SOB that his father was, with a mistress on the side for his entire marriage, he wanted me to be able to leave. He was for women’s liberation before there was a name for it, because he loved women AND respected them. That love and respect was evident in his relationship with my mother, even though he said he “fought for his pants every day of my life” with Mom.

Because of the strength of my mother and father, I carried self-respect into my career and family life.

I have written previously of the crisis that I faced in my marriage over ten years ago, which I wrote about in this blog post. I remember sitting with my Dad in the living room of our house in Davis, over a glass of wine. I told Dad I didn’t know what was going to happen.

He didn’t judge. He didn’t offer advice. He didn’t try to intervene. He just said, simply, “I’m always in your court.”

Dad loved and respected Todd deeply. I know he wouldn’t have wanted our marriage to fail. But he told me in no uncertain terms that he had my back. It was the best thing he could possibly have said to me. And somehow it gave me the strength to persevere with Todd and work through the things that were creating a distance between us.

One of the most painful things my Dad would say to me in these last few years was, “I’m not really a Dad anymore.” When he said that, I felt a stabbing pain in my heart because all of the “fathering” that he did over the years remained with me and would never diminish.

In these last weeks, I would help put him to bed with the help of a caregiver, dim the lights (his habit was to leave some light on) and hold his face between my hands and say, “I hope you rest well, dear. And I’ll see you in the morning. I love you.”

Dad cherished me as I rose from the dependency of childhood. It was a labor of love to mother him when he needed it. I owe him so much.

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How to Renew Your Faith in Mankind: Read About Team Henry

Screen Shot 2012-12-13 at 3.09.04 PM

[Updated Jan. 16, 2012, after Dad’s passing.]

As a caregiver, you always carry the feeling that you are dodging disaster on a daily basis. And then, something actually does happen and you find yourself careening from one thing to the next. That’s how the past month has gone for Dad: first, unusual and extreme shortness of breath; then, a muscle pull that had him almost non-ambulatory; and, this week, a sudden inability to urinate at all, which sent Dad to the ER to have his bladder drained twice in one week.

It’s a panicky time for caregivers. Although I pride myself on trying to handle things, I know I can’t fix all the problems, or keep Dad safe, or keep myself well without asking for help. Sometimes the “ask” is as small as asking a neighbor to make a Target run for a fresh pair of sweat pants. Other times, the ask is pretty big. In December, I initially reflected on my incredible fortune in having built a “Team Henry” to shore both of us up. Today, four days after his passing, I wanted to update it to make sure I would never forget all of the wonderful people who helped Dad and me along the way.

1. Dr. Michael Flaningam, Sutter Internal Medicine – Dr. F agreed to see Dad even before he lived here, when he came for long visits. And since Dad moved here in 2006, he has proven to make savvy adjustments in Dad’s medications (balancing stroke and cardiac conditions), carefully considering the risk-vs-reward of treatments in keeping with Dad’s wishes. I also appreciate his caring interest in Dad; his inquiry about Dad’s WWII experience on the anniversary of D-Day led to my first post on The Henry ChroniclesHe’s called me back when I needed him to, and been a real Trojan at responding to my emails. I’d be embarrassed to admit how many emails I’ve sent him through Sutter’s secure email system (like the rather desperate message ending, I am frantic about the idea of doing this watch for 5 more days. I’m a rock, but not THAT much of a rock. He religiously responded, and was always helpful. Monday evening, as I shared my last dinner with my brothers before they went their separate ways, he called to offer his condolences, as well as compliments for the care we have provided to Dad.

2. Angela, Dr. Flaningam’s medical assistant – You can’t leave messages on Sutter Internal Medicine’s voice mail anymore, but while you could, Angela was Dr. F’s stalwart ears. She always tracked him down and called back.

3. Amber Kwiatkowsky, Dad’s nurse with Sutter’s AIM program – In June, my Dad was referred to Sutter’s Advanced Illness Management (AIM). It took me a while to understand how it worked, but eventually I got it. And Amber, the nurse that oversees Dad’s care telephonically, is why. Amber was my “go to” person for problems I didn’t know how to solve, and she always had great practical ideas, as did her colleagues – the nurses who visit in the home when Amber recommends it. Their goal was my goal: let’s keep Dad out of the hospital and as comfortable as possible. As long as I’m confessing, let me admit that I placed 10 calls to Amber during the difficult week prior to Dad’s hospice admission. I didn’t call the pediatrician that much when my daughter Maddie was a newborn.

4. Pamela, Debra, Dee, Maria, Jo  Jo, Mai, Hayat, Lina and all of Dad’s caregivers at his assisted living community. As Dad has become more emotionally dependent, a host of people have stepped up when Dad is at his apartment. I don’t know their names but I am especially fond of the staff in the dining room; as soon as they see Dad seated, they immediately say, “I’ll get your glass of milk.” That more than anything else reassures Dad that these people know him and are looking out for him. One of the team even brought Dad a lemon tart she’d made at home. (Future hint: Dad’s a chocolate guy but I’m sure he appreciated the thought!)

5. Adam Batten, “Dad walker” – Dad’s quality of life hinged largely on his ability to take a daily walk outside. When I was out of town, Adam came by for 45 minutes before Dad’s lunch to help him exercise safely. Adam teaches an exercise class at an independent living community, and he’s 6’5″, so I figured he could handle my 200 lb. Dad!

6. Chi, Dad’s pedicure champion at Eastern Nails – It’s toenails like Dad’s that led to the expression, “tougher than toenails.” Not only is Chi up to the task but she provides service with tender care.

7. Abigail Kane-Berghash of American River Therapeutic Massage – Dad’s back was extremely sore following a muscle pull. Abigail brought her portable massage table and gently eased his very tight muscles. After Dad was admitted into hospice, we made massage a weekly date. Dad loved it when Abigail massaged not only his back, but his hands and feet. Massage is about more than mechanics, and Abigail knows it. It’s about healing, and honoring the person. Afterwards, he looked not only more relaxed, but happy.

8. My brothers, Scott, Bruce and Dean – I am not an unsupported daughter-caregiver. When I needed my brothers for respite, vacation coverage or just personal support, they came. They also called to say, “How are you holding up?”

9. My husband, Todd, daughter Maddie and son Thom – My immediate family really tops the list of Team Henry but I’m not going to re-order this list! I wrote about Todd “the unsung hero” and our “opposites attract” 30-year marriage in August. Maddie was living at home until October and always went out of her way to converse with Dad, which isn’t easy given his 90%+ hearing loss. One night, when I was especially tired, she told me to go take a break and rest while she watched Dad. (And she went right to work tidying up the kitchen!) It was Maddie’s brainstorm to read Dad’s favorite Shakespeare passages to him just hours before he died, which gave me the idea to read Sonnet 130 as he took his last breaths. And Thom holds “Papa” in a special place in his heart, and vice versa. Something as simple as asking Dad, “How are you, Papa?” — and really meaning it — went a long way. Thom’s medium is music, and he composed one of my favorite pieces of his, “96 Years.” I just wish my Dad’s hearing was good enough to understand it.

10.  Cousin Louise Ulbricht and her daughter, Mary, the only relatives from Dad’s side of the family that keep in touch, always responded when I told them Dad was lonely and asked them to send him an email via his “Presto” automated email printer. Their loving notes and sweet thoughts were so welcomed.

11.  My girlfriends – These are the friends that kept me sane by calling, texting, sending funny cards – and in the case of Collette Johnson Schulke, standing by for a weekly “caregivers’ social club” over wine at my house. Lisa Steele, Tracy Campbell, “Berrendo Babes” (fellow exercisers Kylee Wosnuk, Doreen Mahoney, Erin Celli, Rhonda Heath, Sarah Clutter and Jenny Bittner), Ellen Palmer Carleson and her siblings, Nancy Moffett, Cheryl Tyler Clark, Debbie Hoppe, Tamalon Littlefield and Wendi Taylor Nations… you rock my world. Nancy Moffett, from afar in Tacoma, WA, was a constant source of humor and support.

12. My in-laws – You hear people complain about them? I don’t. My mother and father-in-law Ray and Mary Lou Stone are wonderfully caring, always sympathetic, always trying to make my Dad feel at home despite his hearing challenges. Same goes for my sister-in-law Mary Wemer and her husband, Ken, and my brother-in-law Mike and his wife M’lisse.

13. Dave Delehant, estate attorney – I know Dave didn’t charge the full freight when he helped rework Dad’s will to conform to California laws. Sure, he did the work and did it well, but I especially appreciated his patience with Dad as he explained things over and over. Giving freely of his time was a little thing, but it helped.

14. Sutter Home Health – After being referred by the AIM program for Sutter Care at Home, we had a whole flurry of incredibly helpful visitors. Home nurses included the stylish and delightful Sondra (who knows a thing or two about accessorizing on top of nursing), Angie and smart and in-charge Marie Boyer, the nurse who specializes in the acute stage of advanced illnesses. Rhonda, the physical therapist, came up with a host of ideas about how to minimize strain on Dad’s back. Simple stuff but I hadn’t thought of it, like using the electric lift in his chair all the time, use the wheelchair instead of a kitchen chair at the table because it has arms, etc. And “Jan the Bath Lady.” It doesn’t get any more personal than bathing someone, and it takes a very special soul to make it feel like a day at the spa rather than an intrusion. I’m telling you, this woman made a huge difference to Dad and to me.

15. Karen Rhodes, my lovely housekeeper  – I’ve been fortunate to have Karen’s services for seven or eight years. She has always greeted my Dad cheerily, and she makes him feel special. When I was facing a gap in my caregivers’ schedule, Karen stepped up and changed her schedule to be here to help me, and visited with Dad one evening so that I could take a break with my husband, Todd. When Dad died, Karen cried along with the rest of us.

16. Jim Jennings, my go-to spiritual and emotional counselor – Jim, where do I even begin about Jim? I met Jim when he was the co-director of the US health care practice of Hill & Knowlton where he was liberally consulted for guidance. During my mother’s terminal illness, it was Jim I wrote in the middle of the night when I was tired or in emotional pain. He was alway there for me, returning my written vomitus with a human and helpful response, Since retiring moving to Hawaii with his partner, Dudley, he has become a volunteer and now chaplain with Kauai’s hospice program. He is the guardian angel who encouraged me to identify the five top things I would do to take care of myself as caretaker, which I wrote about in this post. He’s also the “beloved mentor” I turned to when trying to figure out whether I could or should move Dad to my house – which I also wrote about in a post. In the last weeks, he was a constant source of support and advice about the final stage in Dad’s long life journey.

17. Visiting Angels – My caregivers were an integral part of Team Henry. Erin Fraker found a great caregiver, Keyanna Hicks, to watch Dad through the night on six hours’ notice when I realized that Dad’s catheter bag would need to be changed during the night. As Dad’s needs rapidly changed, she constantly adjusted the team, eventually providing support for 17.5 hours a day given the rapid decline in Dad’s leg strength. Keyanna Hicks was a lifesaver and Natalie Posey did a wonderful job on night duty during Dad’s difficult last few days. Though not with Erin’s organization, Tonia Johnson certainly deserves the moniker of “angel”; she was referred by a family friend and joined us Dad’s final week. The coq au vin that she lovingly made on Wednesday turned out to be Dad’s last real meal – and he ate and enjoyed every bite.

18.  Sutter VNA & Hospice – A few lifetimes ago (or so it feels) I became aware of the value of hospice when, as a newbie marketer, I worked for Sutter Memorial and had a chance to be introduced to the concept just as it was gaining ground in the United States. Michael Tscheu, a social worker, explained how this coordinated style of care could provide better quality of care and quality of life for those that didn’t have life stretching ahead of them. Then in 1999, I came to know hospice much more personally as a member of my mother’s hospice caregiver team, after she was diagnosed with late stage lung cancer in Tacoma, WA. Hospice was not as accepted among the medical brethren as it is now; the physician directing her care in the hospital in Tacoma tried to tell me that “it would be kinder for all parties concerned if she just winked out in the hospital.” Convenient for whom? Him? She did come home with hospice and lived a surprising 3 months. And now it’s Dad’s turn. We weren’t sure he would qualify — which I worried about in this post — but I sure knew we needed it. And yesterday we were approved for hospice. Since then, I have met Vina, who does “intake,” Mary the nurse, who evaluates patients for their appropriateness, GC Low, RN, who responded to my telephone inquiry about morphine dosing by visiting. GC spent an hour trying to help me get Dad’s shortness of breath under control. It was GC who responded to our urgent call on Saturday morning, Jan. 12, when she confirmed that Dad was actively dying; she then gave us a very specific dosing regimen for comfort medications to help ease Dad’s passing (which we, overwhelmed, had to have her repeat three times). Over Dad’s 22 days on service, we also received visits from nurses Tony and Barbara, and lots of helpful phone advice from Tracy, a supervisor in the office. In December, Tracy spent a half hour explaining to me how best to transfer Dad after he stopped being able to stand. Dennis Armstrong, the social worker with an amiable, wise soul, visited in the first 24 hours after we were admitted into the hospice program, followed later by Brooke Zakar. We also are grateful for Diana Skinner, RN, our care coordinator, and delightful Rebecca, Dad’s bathing assistant. In Dad’s last week, we also took advantage of the services of Dale Swan, hospice chaplain. Although my Dad teased Dale and said he wasn’t sure he trusted “a church man” (maybe teasing, maybe not), Dale was an important resource to me in what turned out to be Dad’s last two days.

19.  The “Hair Care” Ladies – For at least five years, Dad has gotten his hair cut (along with other extraneous hairs) at a little quick cut place at 5150 Fair Oaks Blvd. They have always been sweet to Dad and supportive of me. So much so that one of them, Hang, one of the ladies, even came to the house to tidy Dad up. Helping him keep his own standards was a small way of demonstrating love for him, one made easier with nice people like Hang and the other women who work there.

20.  James Coyle, DDS, and all of the wonderful people who work there – I was sad when I called to let them know Dad wouldn’t be returning for his six month checkup. They’ve not only kept him healthy, but been part of the broad network of people who have praised his longevity, and well, just his essential “Henry-ness.”

21.  My cousin, Lynn Whiting and her husband, Henry — My cousin, who lives in Bliss, ID, has built a life out of art, poetry and prayer. It just flows out of her spirit naturally, and she shared it with me as things became more difficult for Dad. I referred to her as “the angel on my shoulder” in this post. And I’m about to post the beautiful email and photo she shared with me on the day of Dad’s death.

22. Jennifer Johnson, all-around friend and helper — It seems like every industry has a word for someone who is versatile and helpful. Baseball calls someone like this “a utility player”; in medieval times, someone who was competent with many skills was called a “jack of all trades” (the “master of none” came later and certainly doesn’t apply to Jen!). Jennifer, my friend Collette’s granddaughter, would house sit, walk with my Dad, visit with him, or, when I was out of town, take him Sunday meals at his assisted living community. She didn’t just do it – she got a kick out of my Dad. She’d relay stories to me, such as the time they were walking on the American River Parkway and he’d have little commentaries about the people passing by: “Nice hat. Too bad she must have sat on it.” By letting me know that Dad was okay, she helped me to care for him and keep him comfortable.

23.  Kylee Neff, personal trainer  – In October, I wrote about my list of the top five things I pledged to do to take care of myself as a caregiver. Featured first was working out with my neighbors under the encouraging tutelage of Kylee Neff. I have often said that I lived with future; I saw how important balance was to overall health and wellbeing when you get as old as my Dad was. I started working out with Kylee not long after I turned 50. Training with Kylee was good for every part of me, but above all, she has been a friend. Kylee had a terrible series of things happen to her in November and December but she still managed to be a source of support and inspiration for me. Her little boy, Will, couldn’t have a better mother.

Team Henry, I am so very, very grateful for your part in this story.

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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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Planning Care for the “Biologically Tenacious”

Henry S Campbell

As Dad has weakened the past few weeks, I’ve been preparing myself for his final days. That means coming to terms with what his dying may entail (ugh) and what his loss will mean to me and my family. A tall order.

Enter my husband who reminds me that, “Hey, don’t forget. This is your Dad.” Sure, Hospice thinks weeks to months, and it looks like he may have weeks to months based on all indications. But still. We’re talking about the guy who has survived war, heart attacks, strokes and high risk cardiac surgeries.

This phrase struck me in Sidney Callahan’s post about her mother’s long, long illness with Alzheimer’s in the Over 65 Blog published by The Hastings Center: “biologically tenacious.”

My husband’s grandmother was biologically tenacious. Like Sidney’s Mom, she still enjoyed eating and was comfortable, even though she hadn’t spoken or seemed to recognize people in years. And Gigi always said that she had “a bad heart,” something that amused us as the pages turned on the calendar, long past her 100th birthday.

I also have to be prepared – or at least set up for – Dad’s body persevering even if his mind and heart would prefer to move on. He is still a Marine, and some inner core of him doesn’t know the meaning of “quit.”

In practical terms, I have to have a reliable team of caregivers to help me care for Dad safely here, which means being able to transfer him safely until such time as he is confined to bed. I have a great partner in Visiting Angels, and an independent caregiver who was suggested by a family friend, but I’m not in a reliable groove yet.

This is a practical challenge when someone is facing the end-of-life: scheduling. If my husband wants me to join him with his folks to see Les Miserables, I have to have a caregiver who is capable of transferring Dad alone. On a weekend, if my son wants to run with Todd, leaving me alone in the house with Dad, I will need them to stay close to home in case I need help. The toughest transfers are on and off the john, which really takes two people. And unfortunately, there is no pattern as to when Dad’s urge might strike.

I want to be able to be a daughter and support my Dad every step of the way, but I know I must also make time for my mental and physical health. I don’t feel any resentment at the commitment I’ve made to move him to my house and have him spend his last days here, but I know, if enough time goes by, I might feel that way.

Semper Fidelis, Dad. I will find a way to make this work for both of us.

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