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With Dad Gone, A Void (Part Four)



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)


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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What’s on your list of 5 self care things you do?

My friends and I seem to have entered a new phase. Once upon a time, our calendars overflowed with weddings. Then it was baby showers, and until recently, children’s graduations. Now our email and text exchanges are more likely to pertain to a parent’s health crisis. Usually coupled with news of challenges facing our young adult children.

We’re savvy enough to know that we need to take care of ourselves as we care for others, but busy and stressed enough that it’s really hard to actually do it.

My friend just texted me to say she was leaving town tomorrow to look in on her Mom, who’s had a setback in her recovery from surgery. True to form, she asked me how I was doing, and I replied that things are a bit better on several fronts.

She then asked, “So what are you doing for you?”

To which I replied, “What are YOU doing for you?”

I wasn’t trying to play the “gotcha” game (this isn’t politics, after all), but that’s kind of how it turned out:

Crap. I knew you would turn that one back on me! You know I’m the worst at putting myself in the top 10, or 20, on any list!!! At best, I’m trying to learn to be a bit more compassionate for my own frailties. It’s a start.

I’ve actually been thinking about this self care thing since my guardian angel, Jim, instructed me to list 5 things I would do for self care. That it’s taken me three weeks to think of five things tells you something.

My five are below. I’d love to hear what YOU do to take care of yourself as you care for others. We can all learn from each other — and maybe encourage one another to actually follow through on these things.

1.  Work out with others.

I often say that I live with the future. When you’re around a 95-year-old you realize the importance of strength and balance. I walked but I knew that wasn’t enough. I admitted that I couldn’t motivate myself to do things like – ugh – sit-ups or pushups.  I also thought it was unlikely I’d get my butt out the door to a gym class given my caregiving responsibilities. So, my big plan was to work out 4-6 times with a trainer and then miraculously carry on alone, having formed a virtuous habit. During my first workout, I was shocked at how poor my balance was – that and the fact I couldn’t do 10 sit-ups without holding on to my thighs to heft my upper body from its prone position.

That was four years ago. After a year or so, my neighbors who walked together twice a week for years expressed interest in trying it on for size. Now my driveway is a boot camp at least twice a week. Scheduling that time, and keeping it, is absolutely at the top of the list in terms of things I do for myself.

I figured my trainer, the amazing Kylee Neff, was an absolute liar when she told me I’d have more energy from working out. For about three months, I wanted to go to sleep early on the days we trained. But she’s right. Now if I can’t work out for a week, my energy and outlook isn’t as good. It’s as important to me as – gasp! – coffee once was. (Strangely, I also feel almost no need for caffeine.)

Working out with one or more friends also makes it hard to slack. After all, they show up in my driveway. But the group banter has the extra advantage of taking my mind off the momentary pain of whatever circuit Kylee has dreamed up for that day.

2.  Comfort read.

You’ve heard of comfort eating? I comfort read. My literary diet changes completely when I’m under stress. When my mother was dying of cancer, I was soothed by re-reading The Wind and the Willows. I’m a big fan of Mr. Toad, with or without the Disney attraction. Though I still read heavier fare (for example, The Looming Towers), I am drawn to cheesy and breezy. I read things like Deborah Harkness’ Discovery of Witches series (all two of them), J.R.R. Martin’s Song of Ice and Fire series (a.k.a. Game of Thrones), and the utterly ridiculous Sookie Stackhouse series by Charlaine Harris. Apparently I find fairies, witches and vampires comforting.

3.  Spend time with girlfriends.

My friends save me, over and over. Just knowing they are there is a huge source of support. Nothing against guys, and my husband is the Rock of Gibraltar, but there’s something about deep conversation with trusted female friends. It’s better than wine and chocolate. Recently, a friend and I agreed to set up a weekly time to meet. Her husband has Alzheimer’s and both of us have to coordinate social activities around caregiving tasks. It just works better to put something standing on the calendar. And, yes, it involves wine. Duh.

4.  Stay connected with Facebook.

I actually surprised myself with this one. So much is written about Facebook as a time suck, or about how Facebook is no substitute for deeper, face-to-face connections. But caregiving is isolating, and Facebook helps me to feel there’s still a world out there.

I love the pictures of kids and the quick posts about the sweet or funny things kids say. I travel vicariously through some of my friends whose jobs or travel budgets seem to take them everywhere. I salivate over my foodie friends’ posts about the amazing seasonal recipes they’ve dreamed up. I read the links to articles that appeal to my interests and appreciate the fact they were shared. I catch up on a friend’s recovery from a brutal cycling accident. I feel for the people (and animals) in Eastern Washington when my friend in E-burg posts update on the terrible fires there. It may seem a little strange but I even love the beefcake pictures posted by my gay friends; it makes me happy to know someone’s romantic life is more exciting than mine! Pictures of weddings, funny bits from George Takei, updates from nonprofits I care about… I enjoy almost everything in my news feed. And of course, I can always block the political posts that get a bit annoying this time of year.

5.  Find quiet time.

I’m not a true extrovert, although most people would assume I am. It’s hard for me to find an hour when I can be alone in the house, or at least alone before anyone else is awake. I crave and need moments when NO ONE WANTS OR NEEDS ANYTHING FROM ME. You may have figured out that I blog during these rare quiet moments. And when I say quiet, I mean just that. I feel so over stimulated that I need moments without music or TV. Silence is a balm.

So I’ll ask it again: what do YOU do to take care of yourself? This inquiring mind wants to know.


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Too much love?

Can you imagine this image as an older parent? It’s not how we think about our role as caregivers, is it? (courtesy Teach Through Love)

Our first instinct as parents is to surround our children in a cocoon of love that cushions them against hurts both physical and emotional. But eventually, we find out that we do our children no favors if we never let them struggle.

I am learning that being a caregiver for an aging parent is not that different.

Since I moved my father to California in 2006, he’s spent the majority of the time at my house. He has his own bedroom with a cushy La-Z-Boy, television and bathroom. After giving up the family house where he lived from 1969 to 2003, I wanted him to feel this was home. At the same time, I wanted to know I could leave town and trust that he would be secure, with all of the support services he needs. So he’s had a one bedroom apartment in a nice assisted living community.

The back-and-forth worked just fine until July, when his health became unstable. Although he is now almost fully recovered, his emotional health continues to suffer.

My mother, during the final stages of lung cancer, expressed fear of dying, despite the deep faith that sustained her for so many years. My father wondered why, if there is a God, would he abandon my mother in her hour of need? Now it is my father who fears dying – and, in particular, dying alone.

Ten days ago, he asked me, “Can I come live with you?” He continued, “Living alone is no way to live. I’m afraid to die alone.”

Using my strategic planning skills, it seemed to me that we had to revisit Dad’s living situation. My objective, and that of my brothers, is to ensure that Dad lives with as little physical and emotional distress as possible. To that I had to add an objective about meeting the needs of my own family — oh, and taking care of myself, too.

It seemed to me that there were three possible solutions: 1) Dad would come to live with me full-time; 2) we continue to muddle through with more companion services at his apartment on the days that I am not available; or 3) we limit the number of nights that Dad stays at my house because of his increased distress when he has to return to his apartment.

I sought input from a social worker, a mentor, our home church pastor, his doctor, and a psychologist. Along the way I also had Dad evaluated for hospice and found out that he’s not close to qualifying for that type of end-of-life care. I had to start thinking about what would be best for a period of gradual decline that could last for several years – something I never imagined given that Dad has had three heart attacks, three strokes and three open heart bypass surgeries.

I also had to “listen” to myself. I realized I felt overwhelmed by the possibility of Dad moving in full-time. I really want that to happen, but now isn’t the right time. My Dad isn’t the only one who needs me right now.  I had to admit to myself that I felt exhausted.

The social worker shared a little tough love with me. She said, “He is distressed about the prospect of going back to his apartment because it isn’t ‘home.’ And it isn’t home because you won’t let it be home. He spends enough time at your house that the transition is difficult. He doesn’t remember exactly what happens there and it feels unsafe to him to return.” She went on, “As family members, you’re responsible for providing the caring, but not necessarily the care.”

My beloved mentor Jim offered this advice:

This is very hard to do: separate what is in his best interest and his care needs from your heart duty as a loving daughter.  Like most elders in his situation, he is becoming more child like — likes what he likes and won’t budge; wants his mommy really to take care of him although he would not recognize that is what he is doing to you.  If he does move in and a caregiver is part of the team, you will have to force him to agree to let that caregiver do his/her thing.  You almost have to write out a ‘contract’ that he has to agree to.  Obviously it is not a legal thing, but you use it to force him to focus on reality when he just wants it all to be different and for you to be there constantly.

My church home pastor suggested that I facilitate a casual visit with a priest. “Throw him a lifeline,” he suggested. “He may choose not to talk about his concerns about death, but he may be ready to talk.” And my psychologist friend suggested having Dad evaluated for anti-depressants. His doctor agrees that may be worth trying.

So what was decided? I had a conference call with my brothers last Wednesday night and we decided to try out an arrangement where Dad is limited to three nights a week at my house. I’ve visited him at his apartment every day and joined him for lunch to reinforce the message that the staff knows him and is paying attention.

He doesn’t love it, but he is responding to the message that there are some things I need to do right now to take care of my family and myself. He asks how he can help, and I say, “Just be patient, Dad, and be supportive when I can’t be here.”

Week one went well, but the big test will come this weekend when I leave town for three days… Stay tuned.




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What makes caregiving so hard?

I thought I knew what hard is. Hard was being nine months pregnant, diagnosed with pregnancy induced hypertension (ankles bloated to the exploding point), and getting ready to present the first full-scale consumer awareness study to the hospital system execs for whom I worked. Hard was working full-time, while trying to be a good mother of  a one-year-old and  studying for my M.B.A. during nap time and at night. Hard was working a full day with two hours of commute time on either end.

Being responsible for someone who needs your help and care, it seems to me, isn’t exactly training for the Olympics. But it can feel that way sometimes.

My Dad doesn’t need assistance with the basics. He dresses himself, puts his hearing aids in, eats independently, and has the toileting thing pretty much under control. My caregiving gig is a lot easier than many.

I think what’s hardest for me is the emotional burden – dodging obstacles, holding others up who worry from afar, and coping with the no-end-in-sightedness. I am constantly anticipating problems and talking steps to circumvent them, for example, clearing my Dad’s path of trip hazards and pre-emptively clearing dishes so that my he will not take it upon himself to do so, toodling from the breakfast table to the counter with dishes in both hands (and thus without either cane or walker). When a medication stops working and needs to be adjusted,  I run the gauntlet of conversations with doctors and care staff, trying to get accurate information about the situation (clarifying, clarifying, confirming) and calling and finally badgering someone into changing medical orders.

Dad is unstable enough that my brothers now worry from afar. I understand their vigilance, having felt just the same way when home in California during my mother’s four month hospice period in 1999. When I report setbacks, which have been more frequent during the last month, I get messages from my brothers asking if this is a crisis and whether they should book flights. I know their messages are code for, “Do you think he could die?” I try to reassure them. Understanding that you are going to lose someone is to begin grieving. I know they hurt. [Brothers who read this: this is not a complaint. I really appreciate your increased vigilance.]

We’re not there yet. Several times of late I’ve been asked what I will do when “this period is over” (code for “when Dad is dead”). I don’t know. I can’t plan. If I get my head in the future it will be even harder to manage the day-to-day. So I am actively avoiding long term planning.

Right now my whole world is the next two weeks, in which I hope we will stabilize Dad’s underlying congestive heart failure condition so that his weight swings and shortness of breath resolve, at least until the next unsettled period.

This shouldn’t be that hard. But some days it is. Fortunately, today is not one of them. So far.


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Turn off, brain, and let me go the f* to sleep!

The lovely view from where I didn’t sleep

Just when I feel overwhelmed by my Dad’s declining health, it seems that the sleep gods conspire against me.

My anxiety – and accompanying sense of hyper-vigilance – built to a pitch over the weekend, even while my husband and I attempted to relax in Northern California’s playtime paradise of Lake Tahoe.

Over the past month, the medication that had been working so well to control the symptoms of Dad’s long-term congestive heart failure sputtered and stalled in its effectiveness. His weight dropped from 204 lbs. to 188.5 over three weeks, and then, when we cut back the dosage, spiked back up to 198 in less than a week.

My brother, who came into town to “spell” me for my anniversary trip, called me Saturday night. His voice was choked with emotion as he explained that Dad looked as weak and worn out as he’d seen him. When he asked Dad how he was doing, Dad replied, “I don’t think I can pull through this…”

That night, I left my cell phone on in case my brother needed to reach me in an emergency. Then starting at 1:30 a.m. that night, I started this exchange via text with my young adult son, who was finishing up packing for a 5 day cruise the next day. What’s funny about this is that I just couldn’t let go. I felt utterly driven to ensure that my son did not – gasp! – make a mistake packing:

Him: Do I really need a carryon? I was just gonna keep it simple with a rollaboard.

Me: It if fits that’s fine

Him: Fits what? I was gonna check it

Me: Rollaboards can go in the overhead bin. Then it can’t get lost. If you are going on a cruise your bag will never catch up if it gets lost. When you connect there is more of a chance of it not getting on the 2nd plane. It’s up to you but it’s safer

Me: ‘nite

Him: I have the red one, will that fit? [The red rolling bag is ginormous.]

Me: No. It has to be one of the small black ones. Sounds like you don’t have a choice unless you have a duffel that qualifies as a carry on. Southwest is pretty good about getting bags there so you’ll probably be fine. Don’t check your computer – keep it with you.

Me (again): The carry on can’t be longer than 24″ [Note: I have now gone on SWA via my cell phone to actually check the limitations.]

Me (again): Be careful not to oversleep

Me (yet again): Can I go back to sleep now?

Him: Yeah, sorry, I’m just gonna check it

Me: OK but keep your computer with you. Put your name and home address on a piece of paper inside the checked bag. Make sure it has a luggage tag too or put a paper one on it at the airport. Travel safely.

Me (again): Got your passport? Keep that with u too

Him (now at 2:02 a.m.): Found a duffel, using it instead & I’m not bringing a computer

Me: OK but if they make u check it remember to keep your passport with you, preferably in something by your feet. Passports can get stolen out of backpacks in bins. Students get targeted by thieves.

Me (finally): OK goodnight. I love you. Have fun.

Him: Gnight mom! Love you too & I’m sure we will

You can guess how the night went after that. I didn’t fall gently back into slumber.

On Monday, I made a record 20 phone calls to my father’s doctor, to friends and family who visited my father at his assisted living apartment, and to family to report in. At the time, Todd and I were attempting to complete a 7 mile hike.

That night, I was awake from 3 a.m. to 5:45 a.m. I’d drift into sleep and pop right back out of it.

I know I am not alone. Over the weekend, a dear friend lost someone she’d known and loved since childhood. She texted me last night, “Just took pill… haven’t slept in five days.” My brother who had been upset over the weekend texted me Tuesday, “I slept finally last night, though I had a 90 minute break in the middle.” Another close friend posted on Facebook: “Being the ‘sandwich’ generation and responsible for taking care of both parents and children sucks! Why do both generations have issues at the exact same time?????”

Five question marks is about right.

“Grief is a journey, I’m told,” my friend texted last night.

Yes, it is. But I am fortunate to not be on the trail alone.


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