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The Guilts

Tommy handprint and booties

Two weeks ago, a younger friend of mine called to ask my advice about achieving work-life balance. She has a three-year-old, is in the middle of a challenging pregnancy and is less than a year into a new leadership position. How did I do it, she asked.

I didn’t, I told her. I oscillated between roles rather than achieving balance. Like her, I was pregnant when I took a challenging new job — and I, too, had medical complications. My boss approved the normal six week maternity leave. When I came back to work, my infant daughter still cried much of the day and night. (The only thing that seemed to sooth her, during these colicky periods, was a bouncy swaying back and forth reminiscent of low impact aerobics, which I had continued during pregnancy.) I pumped breast milk sitting on the john in the bathroom. But my daughter soon caught on to the fact that drinking out of a bottle was a lot faster and easier than breast feeding. My milk dried up.

After I had been at that company for more than nine years, I cut back to part time. Then I left and ended up taking a new full-time executive role in a consulting firm. After four years, I cut back to part time. Then I left and took an even bigger full-time job in large company. Guess what I did after four years?

When my little girl was still a babe in arms, I fretted so much about the time I spent away from her that I logged when she slept and when she was awake. Then I calculated how many of her waking hours were spent with me rather than with her in-home caregiver. It made me feel better to know that more than half her waking hours were spent with me.

I tortured myself with questions. Would she be secure in herself and in my love for her? Would her personality develop as it should? What would she think of my choices in the future?

And I got plenty of sidelong glances and snarky comments from others. One of my favorites, from the mother of another little girl: “Your daughter is remarkably well adjusted considering you work full time!” That was meant to be a compliment.

I did maternal guilt really, really well.

The years rolled by. I completed an M.B.A. while working full-time, after which my husband and I had our second child, a baby boy. (Perhaps this is on my mind this morning because I jut had a dream about him as a two-year old, so sleepy that he fell asleep against my chest, and I laid him gently on the couch for a nap.)

Then came the death of my mother in 1999. Before she was diagnosed with late stage lung cancer, I felt that loss coming. I had begun to notice changes seven years earlier, when my son was born. Always helpful, Mom had come down to help, as she had done after the birth of my daughter. When I came home from the hospital less than thirty hours after giving birth, exhausted, I laid down on the couch. My mother hovered over me and asked, “What did you have planned for dinner?”

Her question startled me. I had nothing planned for dinner. I had been busy having a baby!

Her dementia increased noticeably in the following years. She could still dress herself, but more often appeared with stains on her clothing, something she would never have allowed, had she been normal. When Dad encouraged her to do her Albuterol treatment using a nebulizer, she fought him. One night as I laid in my old bed, I heard her yelling in their room above mine. She was shrieking that she didn’t need a breathing treatment, even though she was stopping periodically to catch her breath.

After Mom died, I fully expected Dad would be one of those men who followed their wife to the grave within six months. Though neither used the phrase, they were soul mates: a couple who fit together magnetically with complementary intellect, humor, affection and — yes — sexual enjoyment.

Dad didn’t die. But after a few years, he decided to take himself off the road, and he moved to an assisted living community near my brother. In his apartment, where a little pale Seattle light came in through one window, he seemed to shrink.

The question of work versus family asserted itself. Again. By this time, my daughter was a junior in high school and my son, in seventh grade. I hadn’t missed their childhoods, but I certainly hadn’t been present for large parts of it.

This doesn’t come around again, I thought to myself. By “this,” I meant time. Time with my father, time to do what I could to ease his final years. We had every reason to believe — based on what his cardiovascular surgeon had told us in 1999, after Dad’s third open heart surgery — that his final years, maybe even his last year, was upon us.

I would have time with my children in their teenage years and young adulthood (presuming they wanted to be around me at all). I would not have time with my father. That window would close.

If you’ve read my blog before, you know what happened next: I retired and moved Dad to California. He lived an expectation-blowing seven years under my care.

So why guilt? Because I wonder, why was I able to give up my career for my father and not my children?

I have lots of things I say to make myself feel better about it, but it doesn’t make the feeling completely go away.

The Guilts. I think of them as forming a place, a dark, swampy bog that smells acrid, of things decomposing, where quicksand sucks you in and pulls at your ankles. I know it well.

I hear the voice of my own mother, the woman who knew how to soldier on, seemingly without regrets.

“The world needs you,” Mom told me on her death bed. Sometimes I have to remind myself.

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Caregiver Love Stories

Rick and Marianne Rayburn (photo: Capital Public Radio)

Rick and Marianne Rayburn (photo: Capital Public Radio)

I just finished listening to the premiere of Capital Public Radio’s multi-media documentary series looking at the lives of family caregivers, aired in its slot, “The View From Here.” If you missed it, it airs again tonight at 8 p.m. (listen live here).

Our local NPR affiliate chose to name the special, “Who cares?”

That provocative title was chosen in recognition of the financial, physical and emotional strains that an estimated 65 million Americans face as family caregivers.

I’ve been a family caregiver, and I know two — right now — who are dealing with the kinds of challenges the special describes. I won’t kid you. This special does not pull its punches when describing the hard, day-in, day-out grind of caregiving for children, parents or spouses who are unable to care for themselves. As caregiver Rick Rayburn put it in his interview for the special, “It’s like Groundhog Day every day…”

The special asks an important question, “Who cares for the caregivers and what are they doing to care for themselves?”

Rick’s story really struck me. In it, I could hear echoes from both of my friends who are caregivers right now. For several years, one has been caring for her husband at home; her husband was diagnosed with Alzheimer’s more than 10 years ago. On Monday, he was admitted into hospice, recognizing his accelerating decline and weight loss. The other is also a spouse-caregiver, but a husband who is caring for his wife after a rare disease caused her to have six strokes in a row last summer, at just 60 years of age. Both are loving and devoted spouses, but man, what they are doing is HARD, and they do it largely alone.

In the radio series we meet Rick Rayburn and his wife, Marianne, who contracted a viral brain infection two years ago, and ended up in coma. But even before the encephalitis, the family had noticed signs of dementia. She is able to walk and talk, but has virtually no short term memory, needs to be guided through daily tasks, and alternates between reality and fantasy.

Rick says, “I’m 100% responsible for her wellbeing.” Sometimes, perhaps after he lays out her clothes for the day, she will say, “I don’t know who you are.” “I can run out and empty the trash cans,” Rick says, but he worries about staying away for more than a short period.

Meanwhile, he is facing health issues of his own — light headedness and dizziness that doctors have not been able to explain. He recognizes that his ability to care for Marianne depends on his ability to keep going. He tries to go to the gym and wishes he could go for a run, but when he does, fatigue and vertigo get in the way. When he cannot, he is self-critical.

This caregiver story shines a light on one of the hardest aspects of caregiving: isolation. Rick has a great family, but their network of friends has slowly melted away. It’s a practical problem — as a caregiver, you just can’t get out much — but it also has to do with avoidance by others, and their discomfort with the changed reality.

Rick explains: “Less frequently, people are asking, ‘How are you doing?’ This sucks when  you lose your wife or your best friend. It’s hard to relate to people… in a way that doesn’t turn them off. …Sometimes you don’t see people you used to see. …I’ve read that caregivers die before their patients, generally speaking. The kids are going, ‘whoa.’… My daughter wants to know how I am doing, both physically and mentally. She’s the one person I talk to about the difficulties I’m having.”

The radio special included a taped conversation between Rick and his daughter, in which he describes an unpleasant incident earlier in the week. Marianne was trying to go out the front door to wherever she thinks is home.

“She gets kind of entrenched,” Rick told his daughter. “I hollered at her. … You feel kind of helpless at moments like that…. It’s one of those things that degenerates…. She gets mad and gets her stuff, and I have to take her stuff away… She doesn’t want to be with me. I have to go grab her on the porch. That’s atypical. The evenings have been really good.”

His daughter says that she is most worried about her Dad. I know what she means. With my two friends, I know their loved ones are as comfortable as they can be, even happy most of the time. They’re doing a great job of providing loving care. I worry most about them. She says, “He’s doing the best he can. I worry that he’s wearing  himself out… And it’s lonely, it’s really lonely.”

Rick talked about the erosion of friends. I’ve heard from family members of head trauma survivors that most of their loved one’s friends can’t adjust to the changed person. “You just wish that good friends of Marianne would drop by every now and then,” Rick told the interviewer. After a brief visit by some friends, Marianne stood on the porch and waved to them. “She said, ‘Thanks for coming, guys.’ It was so heartfelt. I appreciated that they came by. It was something so simple. That moment just struck me so much, how important that was to her…. It is human nature, things begin to fall off. It’s sad to see that happen. What you need to do and I need to do is make those things happen.”

Rick’s mission is “to make every day a good day, despite dementia.” I see my friends trying to do the same thing. “Rick is on his toes all the time, just to keep her in the present,” comments Rick’s daughter, “He is now Marianne’s tether to reality.”

Somehow, when I was a caregiver, I kept going. Even at times that I felt I was crumbling. I see my friends doing the same thing.

How do caregivers keep going? They pray, they accept help, they give themselves pep talks. Rick notes “there are the moments you get really sad. Then you say, ‘let’s get with it. Quit feeling sorry for yourself…. stick with it’. Oddly enough, it does work. It takes you back to ‘this is the deal’ and it’s too bad, but this is the deal.” Another clip of the interview with Rick had this: “With change there’s an upside and a downside… knowing that you will get through it. That’s done a lot to ease the anxiety in this whole deal.”

The other stories are also well worth listening to. Believe me, they will make you count your blessings.

Loretta Jackson cares for both her father, who has dementia, and her sister, who suffered a stroke and is severely disabled. She says she does what she just has to do. She says her doctor tells her, “Quit stopping em, sit back, accept the help.” She admits, “I had to learn how to accept help from others.”

The Lees are parents of Justin, a 16-year-old boy who was born with a brain abnormality that resulted in cerebral palsy. He is nonverbal, has seizures, can’t use his limbs, and is gastric tube fed. He can give a long eye blink to indicate “yes.” Justin’s disabilities are so severe that he would need institutional care if not at home. His parents are deeply committed to making his life as good as it can be, and keeping him at home.

Toward the end of this morning’s piece, Rick tells the interviewer, “Your love doesn’t change,” noting that he and Marianne have been married for 42 years. “Changed as she is she’s still a wonderful person, and thank God she’s still with me.”

Full length stories can be found on Capital Public Radio’s website, which also lists resources to help caregivers (and those who love them).

Author’s note: I typed quotes as fast as my little fingers could go. My apologies if I didn’t capture every quote perfectly. Hat tip to my Dad, who made me take typing in case I ever needed to support myself. Grin.

 

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10,000+ Views: Thanks for Stopping By

A blogger's home computer

Blogging is kind of magical to me. Not the writing part (though the way I write sometimes feels that spontaneous). The community part.

The Henry Chronicles was my little cry in the wilderness. It felt natural to share joyful little stories of my journey with Dad, because finding the joy kept me going. Writing about the tough days gave me a way to move through the pain.

What has surprised me about The Henry Chronicles has been the people who find it.

I wrote my first post on June 28 two years ago, an answer to my Dad’s doctor’s question about whether he was there on D-Day, meaning Normandy. I felt the urge to record what D-Day meant to my father. He had lots of D-Days, but they were in the Pacific.

That was 138 posts ago. I’m still writing, because I’m still remembering, and still coming to understand my mother and father’s legacies.

The blog didn’t go as planned. I thought I would write helpful tips about caring for an aging parent based on my experience just as I write a blog tips and practical information for small, local nonprofits. (I write a travel and hiking blog, too – call me crazy.)

The Henry Chronicles became something far more personal. I poured out my heart here. And the more honest I got, it seems the more people found it and resonated with my little glimpses of life with Dad. The less I tried to advise people and just shared, the more helpful the posts became – at least based on comments and views.

I’ve felt supported and honored by many of the comments people have shared.

Sean wrote, “I understand well what your words mean. But, from a non-experience perspective. I was never emotionally close with my mother and never ever with my father who was emotionally and physically ‘not there’. But, I know they felt a good deal of what you say, but, they just were not themselves brought up to explain and talk about ‘feelings’ and emotions.”

Jane said: “I wish I could have been as patient and giving when my paremts died (fortuunately a much quicker process) and I hope that one or more of my children will be patient and giving when my own time comes…”

Richard jumped on after reading about my visit to Marine Barracks:  “My father never spoke of the trials he endured on Tarawa, Saipan and Tinian – I only learned from others. I know my visit to the Barracks will be an emotional and moving experience for me. My father was proud of being a Marine but spoke of war as the horrific tragedy which it is and the friends of he lost. In a way, our visit is like a ‘coming home’.”

Karen, and other family members watching the last stages of Congestive Heart Failure, appreciated hearing about my Dad’s last weeks, as hard as it was to write about them: “Thank you for sharing your father with everyone who reads this. My mother is 75 & has chf. By following each step you have taken.I now have more insight & answers.before I was so lost with questions that couldn’t be found. Your dad will live on forever in the hearts of families that struggles with this disease. Thank you henery for giving your daughter the strengh to share & a heart as big as yours!”

When Dad died, Kristi and others came on the blog to send love and condolences: “In the tears that have welled in my eyes are full measures of gratitude for your father – his role as husband and parent, his contributions in service to his family, country, faith, vocation and avocations – and for your love, devotion, care and eloquence in sharing so much with so many. Your service has been a benediction, Betsy. In sympathy and with joy for his life and legacy – your good fortune in having such a wonderful Dad. Love.

Thank you, those who have stumbled across Henry Chronicles, for your support. It made a difference to me.

If you’re curious (I was), here are the top five posts:

1.  The Consequences of Dad Losing His Filter (July 10, 2011)

2.  A Wish and a Dream Fulfilled (August 16, 2013)

3.  A Long Day’s Journey into Night with Congestive Heart Failure (January 29, 2013)

4. 30 Years of Opposites, Happily Ever After (August 7, 2012)

5.  With Love, to the Last Breath (January 12, 2013)

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Cracking Open

By Hectonichus (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0) or GFDL (http://www.gnu.org/copyleft/fdl.html)], via Wikimedia Commons

Bereavement can be strange.

It’s been more than four months since Dad died. Immediately after his death, I was bone tired, contemplative, somber without being sad. Having a day stretch ahead of me felt like a balm. I could think what I wanted, feel what I wanted, do what I wanted.

For a time after that, I ran away, though not consciously. I had a backlog of people I wanted to spend time with. It was suddenly feasible to visit them rather than ask them to visit me.

It no longer feels strange not to be caring for Dad, nor unsettling when awareness comes suddenly upon me that I am no longer his caregiver. I’ve stopped startling when I realize I can be without my phone as my constant companion; I can take a walk without carrying it, or go to the movies without it turned upside down against my knee, on silent mode, so that I will feel any urgent texts or calls. We can eat dinner when we want, and linger at the table for as long as we want. I’ve stopped listening for the click of the brakes on his walker, mentally following his path to the john during the evening and night to make sure he safely settles back into bed.

I am untethered. But now I feel directionless. And I am restless.

I’ve known restlessness in the past: intellectual restlessness, physical restlessness, even sexual restlessness. This restlessness has a different tenor.

I am pent up, ready to do something, something else, but what? I have the attention span of a squirrel. (Which, when combined with ready access to Google, can be downright dangerous. I just learned, for example, that a squirrel has an attention span on normal things of about one second and about four minutes on acorns and nuts.)

I want to hike. I want to learn to sail. I want to create a template from the strategic planning I’ve been doing for nonprofits. I want to write.

I know that I am fortunate to have this time of freedom. When my mother died after four months in hospice, my employer at the time was clearly unhappy with me; that “take all the time you need” turned into “get back in here and start generating revenue!” I was thrown back into a political maelstrom at work, settling in to a new house, and worrying about my newly widowed father.

Time to think, feel and figure things out is a luxury. Time is something I’ve never had much of. It makes me uncomfortable.

An old friend who specializes in organizational development used to say, “Break down, break through.” I have disassembled the pieces of my life and am looking at them like so many Legos, wondering what to build.

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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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Re-forming as Family

Selfie portrait Betsy and Sandy

As my Dad grew more frail, his world shrank. Eventually it consisted of what fell within the four walls of my home, augmented by the daily newspaper and the Military History Channel. My world shrank, too.

Dad’s passing has left a huge void, but it’s also given me the freedom to renew relationships. Last month, I was delighted to host my niece (who is more like my younger sister) and then my brother Dean.

Instead of a visit focused on my Dad, we focused on us.

Sandy’s visit was originally slated for January 19 as a chance to say goodbye to Dad, a visit that was postponed when he died January 12. I didn’t know how she’d feel, returning to a house still vibrating with his presence, sleeping in the guest room that has been known as “Dad’s room” since December 2006.

I like to whine that I was kicked out of my room upstairs when I was 10, relegated to a windowless room in our concrete block basement when my not-quite-21-year-old brother moved in with his wife and newborn. I was still unable to sleep away without becoming homesick, and not happy about losing proximity to my parents’ room and the living room, where I could hear the murmur of their bridge games long after my bedtime.

Then I fell in love. There are few loves like that of a pre-adolescent girl for a baby. Having Sandy in our home was even better than the Brenda Bride doll I received for Christmas that year (its trick was to catapult the bouquet).

Sandy on Stinson beachSandy is all grown up now, of course. She’s been married to a great guy for nine years and has two adorable boys, 4 ½ and 6 years of age. It was so comfortable to hang out with her – not the same, perhaps, as when we sat squished together in the recliner in the Rec Room downstairs, watching TV – but still so easy. We had lunch on the dock at Sam’s Anchor Cafe in Tiburon, drove to Stinson Beach, and made a dinner stop in Davis before returning to Sacramento.

Dean’s visit was as different from his prior one as can be imagined. The day after Dean arrived last January, Dad’s condition rapidly deteriorated. Disquieting symptoms eclipsed one another in rapid succession. We frantically conferred, called hospice, implemented steps to increase comfort. We were riding on the roof of a fast freight train that raced out of control, hanging on around the curves, never catching our breath.

After Dad died, we were breathless. We knew we had done our best, but our best couldn’t reverse the inevitable end. We gathered with Scott, Bruce, Maddie and Tommy. We held each other, talked about logistics. The “boys”(they’re still “the boys” though the eldest of us is now 70) relegated the medical equipment to the garage and sorted through Dad’s small store of effects.

When Dean arrived in April, what we did first recall that traumatic week in January.

Then we played.  By happenstance, Todd was away, so it was just Dean and me. I don’t remember the last time that we had time together with no responsibilities, no competition for our attention, no agenda. Maybe we’ve never had free time like that.

My brother and me at TasteWe drove up through the rolling green pastureland to the Gold Country and enjoyed a delicious, slow lunch at Taste. We sampled Barbera at a few wineries. After returning, we went to a mindless but entertaining movie (Oblivion).  We just had… fun.

I’ve been wondering: who is my family now that Dad is dead? A family is not one organism. It’s a system of relationships. Every single combination of individuals is a relationship, with logarithmic permutations. Until now, we have had Dad as a connecting fiber. Family as we knew it blew up, but the component parts are gravitating back toward each other, re-forming.

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Searching for Answers About Congestive Heart Failure (CHF)

photo credit: womenshealth.gov

When you’re caring for someone with a deteriorating health condition, you can often feel alone. It’s up to you to stay on top of symptoms, reach out to doctors, and try to make sense of information that is unlike anything we’ve ever tried to understand. It seems that congestive heart failure is one of the diagnoses that is most frustrating for health care professionals and caregivers to manage. It can proceed in so many different ways.

A few minutes ago, a woman named Karen commented on a blog post where I shared – in detail – my journal of my Dad’s 10+ year experience with congestive heart failure, as well as his last month of life. She wrote, “I was so lost with questions that couldn’t be found.”

Unfortunately I don’t have answers, but I put my Dad’s experience “out there” in the public view so that caregivers like Karen could see one example of how CHF developed and what happened during the rapidly-changing period that Dad was in hospice. I’m glad it was helpful to her in some way.

Curious, I looked at the statistics for The Henry Chronicles and was astounded to see that 20 people who found this blog in the past 30 days were searching for information about CHF.

Some of the queries were obviously clinical, like, “end stage congestive heart failure,” but others spoke to the painful and powerful experience of a caregiver trying to understand what to expect, how to prepare — emotionally if nothing else: “congestive heart failure journey.”

My Dad’s journey is over, but I am with you in spirit, fellow caregivers, as you try your hardest to make sure that your loved one has the best possible quality of life.

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