Tag Archives: caregiving

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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Seeing The Old Through a Glass, Darkly

Henry Snively Campbell 2012

I almost titled this blog post, “I See Old People.”

One of the most beautiful and painful aspects of spending a lot of time with someone as they near the end of life is to glimpse life through their lens. To watch my Dad’s face as he drank in the view off my back deck — a vista of one redwood tree that commanded his attention — was to experience a bit of heaven on earth. His face softened, the corners of his mouth tilted upward, and the expressive wrinkles around his eyes contracted every so slightly. Minutes passed as he gazed across the yard. He communed with the natural beauty before him. Poetry sprang to his lips.

When we were out in the community, however, I became aware of how others viewed him. Or rather, didn’t view him.

At restaurants, in the grocery store, out on the bike trail, I could see people’s eyes take me in, dart over to the attractive young people in the vicinity, and skate over Dad. One of the smartest men I know was assumed to be either an imbecile or ugly. When he made a witty remark, as he often did, they didn’t get it. They weren’t listening. I thought he was hilarious. When they looked at him, they saw the walker, the wrinkles and the funny lump on his forehead. I thought he was handsome.

In articulating his vision of the church, I am heartened to see that Pope Francis calls out three groups as particularly important to the people of God: the poor, the unemployed young, and the old (source: republicca.it).

“The most serious of the evils that afflict the world these days are youth unemployment and the loneliness of the old. The old need care and companionship; the young need work and hope but have neither one nor the other, and the problem is they don’t even look for them any more. They have been crushed by the present. You tell me: can you live crushed under the weight of the present? Without a memory of the past and without the desire to look ahead to the future by building something, a future, a family? Can you go on like this? This, to me, is the most urgent problem that the Church is facing.”

I’m not Catholic, but I am with the Pope when it comes to being pained by the loneliness of the old.

Not everyone is in a position to offer care and companionship to an old person. But everyone is in a position to see them, and in coming face to face, to recognize the bit of God that is in all of us, especially the very old, who have seen so much of life.

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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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The Anxiety of Aging Parents

hospital bill

The title of this post can be read two ways. As parents age, they become more anxious, but we adult children become more apprehensive, too. Like a migraine headache, financial security just keeps pounding away. Especially when bills like the one above arrive. Dad came out one morning unable to speak clearly, having experienced what we later learned was a TIA or mini-stroke.

My Dad was unusual for recognizing his increasing limitations as he had plenty of medical reason to expect that a period of incapacitation could precede his death. He had a will, gave one of my brothers financial power of attorney, had a checking account with two of us on it in addition to himself, turned over bill-paying to us, and purchased long term care insurance (though, regrettably, without an inflation rider making those years of premium payments a ridiculously bad investment).

That said, he constantly worried about whether his financial resources were adequate. Anytime an “Explanation of Benefits” arrived from his supplemental Medicare plan insurer, it set off a new round of questions – even if it clearly stated that he did not have to pay the amount. I took to carrying with me a handwritten ledger of his monthly income and monthly obligations.

“See? You’re fine,” I would reassure him.

The flip side of the parent-adult child financial anxiety coin is harder to solve. How do you have “the talk” with a parent who doesn’t think his or her financial situation is an appropriate topic of conversation? At a financial seminar hosted by UBS last week, I learned that the average age of a widow is 55. Older married women – still – don’t necessarily know the details of their financial accounts.

This morning’s New York Times carries a great article, “The Talk You Didn’t Have With Your Parents Could Cost You.” Among other tips, it quotes Amy Goyer, a caregiving expert at AARP, who offered these practical suggestions:

  • Know what type of information you are seeking before you start a conversation, such as: whether a will exists, a financial power of attorney, a medical power of attorney or health care directive; what their health insurance covers, including long term care insurance; whether they have life insurance; and if there is a list of every singe account they owe or collect money from.
  • Start conversations with an “I” statement such as, “I’m concerned about doing the right thing when you pass.”

Although my Dad shied away from the Internet (after a few attempts), the article also reminds adult children to secure passwords for any Internet-only accounts. And the worst place to keep legal documents and instructions, the article suggests, is a safe deposit box, because survivors often lack access to them.

I know it’s “nature’s way,” but certain aspects of aging have always struck me as cruel; high among them, our parents’ feeling of insecurity as they lose ground. Though adult children have a moral obligation to protect aging parents’ security, we can’t lose sight of the need to ease their hearts and minds. That often takes finesse, driven by caring concern.

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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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