Tag Archives: love

February 16, 2013 · 9:53 pm

A memorial just as it was meant to be

My last bouquet of roses from Dad

My last bouquet of roses from Dad

I don’t know why I dreaded Dad’s memorial today, but I did. But it was perfect even in its imperfections. As I told my son tonight, Thom, everything was exactly as it was meant to be. Down to me inadvertently saying that Dad had a “big ass” smile on his face just hours before he died.

Together, my brothers and I painted quite a composite picture of Dad. Following are my remarks and in upcoming days, I’ll post theirs:

“There are many ways to look at my father’s long life. You can look at it through the lens of history. He remembered having one of the first phones in Yakima with its three-digit phone number.. You can look at it through the lens of medicine. He was a walking miracle who lived 50 years after his first heart attack. You can look at his life through the lens of professional accomplishment, a tough, smart Marine who was twice decorated with a bronze star with V for valor and who was unafraid to challenge his superior officer even when threatened with court martial.

But I think of my father’s life as a love story. He was a middle child in a difficult family. He loved his mother deeply but feared his father, who he referred to as “The Great I Am.” Dubbed “the smart one” by his family, he was accelerated in school by two years, which he said was a disaster for any young man with an interest in young women. He said he didn’t stand a chance.

My Dad was a romantic. Meant to be the family lawyer, he was in love with words. He began to devour and memorize large swaths of poetry, with favorites including Shakespeare and 19th century poets.

Then he met my mother, and the next chapter in his love story began. As my Dad told the story, it was spring of 1939 at the UW, Dad’s senior year. After drying himself out from a binge in the taproom of a local brewery where his fraternity brother worked, he seated himself in Dr. Padelford’s class on Robert and Elizabeth Barrett Browning whereupon he saw “this vision enter the room, dressed to the nines.” As my grandfather said when he met my mother, “Son, a pretty face will fade away, but a good pair of legs will last forever.”

If ever an immovable object met an irresistible force, it was my father meeting my mother. My mother, upon learning that Dad was pinned to a girl in Yakima, handed him $5 for train fare and told him not to come back until he had the pin. In 1941, after Dad had been commissioned as a second lieutenant and was stationed in Quantico, Mom sent him a cryptic telegram saying that she accepted his proposal and was heading east with her mother to get married. He swore that he had no recollection of any such proposal.

Fast forward to 1999. Though I knew of Dad’s love of poetry and Mom, I don’t think I truly understood how driven he was by love until after Mom died and his life-long confidante was gone.

At the end of Mom’s 3 ½ month illness with late stage lung cancer, at sunset on May 10, 1999, I called my father in to their bedroom after I noticed that Mom’s color had changed; while I called hospice, he held her hand, told her that he loved her and that he would be with her again. Then her heart stopped.

As we sat together in the days that followed, recollections began to spill out from him.

First he recalled Mom. As I wrote later, “In the days after my mother died, my father recalled some of their intimate moments like movie images, how she looked with the glow of moonlight on her body.” It would have been a beautiful moment were I not trying to poke my mental eye out.

Then Dad began to talk about the war, something he had rarely done before. 

But the most difficult memory he shared with me was that of the final illness of my sister, Midge, in 1953. Dad sat on the couch and described her in her oxygen tent in the hospital, reaching out her arms toward him, and saying, “Daddy, help me.” He said that he went out in the hall and pounded on the wall with his fists. “I could do nothing,” he said. As he told me the story, he repeatedly slapped his forehead, not gently, but hard, crying. I finally took his hand and told him to stop hitting himself.

In 2006, I invited Dad to move to California, figuring that he was, as I put it, “past his expiration date.” The cardiovascular surgeon who operated on him in 1999 here in Tacoma had projected that the surgery would give him lasting relief for only about five years. Then he expected that Dad’s heart disease would likely end his life.

The ensuing seven years after Dad moved down were transformative, for Dad and for me. I listened as he worked through the most important experiences in his life. His love of Mom. The War. The Loss of Midge. His difficult relationship with his father. His love of his mother. Like all of us, he had regrets or things he never understood.

He softened. When I once commented that he seemed to have become more gentle and less judgmental as he aged, he said, “Who am I to judge?”

Perhaps my father’s biggest challenge was his final one – the grueling march of his final years.

His physical abilities were seared away by time. He lost his hearing. His balance faltered. His chest pain increased. His breathing became strained. It was brutal to watch.

What remained was Henry, distilled and pure. He loved red roses, which represented his love of Mom, and for several years after Mom died, he sent them to his favorite women: Ann Palmer, his daughters in law, his niece Louise and great-niece Mary, and me. He still loved chocolate and enjoyed his last bowl of ice cream with chocolate sauce the evening before he died.

He still cared about the future of the nation, and voted in his 19th presidential election last year. He still loved and worried about his adult children, grandchildren, and great grandchildren. I asked him once, “Do you ever stop worrying?” and he said, “No, never.”

I said this was a love story, and it is. On the day my father died, he was agitated. His time was near, though we did not guess how near. At about 11 a.m., Maddie comforted him by reading poetry from the little book I created of his favorite poetry, “Henry’s Passages.” She read Longfellow, and Shelley, and, of course, Shakespearian sonnets.

Around 3 p.m., after being unresponsive most of the day, Dad suddenly smiled. And shortly before 6 p.m., his eyebrows lifted, as if he was seeing someone who delighted him. And his lips began moving as if he were speaking to that person. Dean and I felt that he was seeing Mom.

Dad’s breathing suddenly changed at about 6 p.m., Dean held Dad’s hand, and I started reading Shakespeare’s Sonnet 130, which was the last sonnet Dad recited from memory, several days before. Then his breathing slowed, and finally stopped.

Henry Snively Campbell – loving friend, son, brother, uncle, husband, grandfather, great grandfather, father-in-law and father — died in a state of love, which is to say, a state of grace.”

Leave a comment

Filed under Uncategorized

Tagged as , , , , , , , , , , , , ,

February 13, 2013 · 1:57 pm

A time to every purpose under heaven

My brother and niece

When my father talked about the death of my sister, Midge, he often went on to describe the birth of my brother, Dean, not so many months later. “It was as if the sun came up,” he said.

After a loss, how it heartens us to see a fresh generation behind us, revitalizing our faith in life and our hope for the future.

Last weekend, I ventured to Minneapolis (brrrr…) to see my niece Eileen become a bat mitzvah.

From the moment my brother, Dean, and his wife, Gwendy, met Eileen — in a Holiday-Inn sized hotel room packed with 10 adoptive parents, six children less than a year old, and eight caregivers, she stood out from the crowd. She was the only one who didn’t cry as she regarded the two people who would take her home, love her and raise her. When Dean and Gwendy brought her back to Seattle in November 2000, it was just a year or so after Mom died. At the time, I wasn’t quite ready for Mom’s name to be attached to anyone else. But Eileen is the perfect inheritor of her name.

My brother Dean made these remarks to her as she took on her role as an adult in the Jewish faith:

“When I see these characteristics growing within you, I am reminded of another person I deeply loved: my mother and your namesake, Eileen Driscoll Campbell. I see your determination and focus; your love of God, family, friends and life; your fun-loving spirit and lively sense of humor; and your ability to see and embrace the goodness within others, and I realize these are the same qualities I loved within my mother. I wish that she had been able to know you, because I know she would have loved you as I do.”

Jewish people know a few things about love and longing, and that includes their traditions for remembering those who have died. I loved this bit from the mourner’s kiddush section of Shir Tikvah’s prayer service:

“Grief is a great teacher, when it sends back to serve and bless the living… (E)ven when they are gone, the departed are with us, moving us to live as, in their highest moments, they themselves wished to live. We remember them now; they live in our hearts; they are an abiding blessing.” — p. 294, Mishkan T’Filah 2007

Grief is a great teacher, and I am its student.

Leave a comment

Filed under Faith journey, Uncategorized

Tagged as , , , , , , , , ,

February 1, 2013 · 9:24 pm

Let Us Cross Over the River

Dad pointing out fish on the North Umpqua in 1999, shortly after Mom's death

Dad pointing out fish on the North Umpqua in 1999, shortly after Mom’s death

With Mom’s death and now Dad’s, I’ve noticed that it takes time to expurgate the image of them near death – diminished and battling. In Mom’s case, I awakened after three days with a brilliantly clear “dream” of her at the kitchen table in her favorite pink quilted bathrobe. Blessedly, that became the image I carried with me as I mourned her death and celebrated her life.

With Dad, what keeps coming to me are images of water, which I shared in earlier blog posts. I thought the dream about safety drills under freezing water, dozens of stories below ground in a mine, and another about paddling a crew boat across a cold, choppy channel, represented how I was trying to rescue Dad.

Then I had the dream about entering my living room to find a group of seven caregivers. The six clad in white told me they were there to “lift Dad up.” When I asked the caregiver clad in a black swim cap what he was doing there, he said he was for “after.” I knew that he was there to swim Dad across the river, as in the River Styx.

Rereading my emails to my brothers, I came across some from summer before last. All that summer, Dad and I “shade hopped” from one side of the street to the other, walking down Mariemont Avenue, ending across from a large oak tree. Most days, before we crossed, Dad would recite Stonewall Jackson’s final deathbed statement, as transcribed by his physician, Dr. Hunter McGuire. McGuire wrote:

Presently a smile of ineffable sweetness spread itself over his pale face, and he said quietly, and with an expression, as if of relief, ‘Let us cross over the river, and rest under the shade of the trees.”

If there is life after death – and I believe there is – surely Dad is resting in the shade by a beautiful river.

Leave a comment

Filed under Uncategorized

Tagged as , , , , , , , , , , , , ,

January 26, 2013 · 5:03 pm

Blessed by God

Prayer boat by Lynn Fawcett Whiting

When I spoke to my cousin, Lynn Fawcett Whiting, on the evening that Dad died, she told me she had just sent the following email to me about sending up a prayer on his behalf. Dad died sometime in the hours after she performed this lovely ritual:

When we were children, maybe you did this too.. we sometimes made bark candle boats with our mother to put on the lake at sunset to send our prayers to God.  This afternoon led by that little girl I found a piece of bark and carved a hole in it for a candle, and lined it with wax and muslin. Henry and I wrote our prayers on washi paper with gold leaf and folded them in Japanese love knots and placed them in the bark boat. We then made our way to the National Wildlife Sanctuary on the Snake River where countless thousands of birds are wintering over… Wild swans, snow geese, Canadian geese, Mallards, Teal.. ducks of every variety, cormorants, coots, .. not only heard our prayers but joined our plaintive cry and called the landscape to prayer.. as the sound of a thousand wings lifted in the brilliant light of the setting sun and carried our prayers to God.  The message was a simple one.. Everyone who has known or been touched by Henry Campbell has already been blessed by God.

1 Comment

Filed under Faith journey, Uncategorized

Tagged as , , , , , , , , , , , , , , ,

January 22, 2013 · 5:20 pm

Can This Love Last?

Holding on to love

In the wake of Dad’s death, I am deeply reflective.

We hear a lot about how hard caregiving is on caregivers, and I admit to feeling at my wit’s end during the most challenging periods of my Dad’s final illness as I wrote about during this blog post. And yet… I have rarely felt so filled with love as during these last months. Maybe I’m experiencing the same kind of amnesia that once dulled my memory of the pain of childbirth.

I’ve known many kinds of love in my life: romantic love, maternal love, even “sister-wife” love. The kind of love that I experienced when focused on my Dad’s needs approached something on a more spiritual level. I find that I miss the “love bubble” that I lived in with my Dad these past few months.

During the past couple of months, I’ve struggled with matters of faith and was angry about the natural order of things, which can make old age and dying a brutal experience. My beautiful cousin Lynn wrote, “The Love you are feeling is God. Everything even the agony is part of that love. This is your path now… with your father.” And my mentor Jim wrote, “Your Dad does not have to have all the answers to all the questions right now. He needs heart connection because that ultimately answers the unanswerable questions and ensures him peace of heart and peace of mind so he can release. Whether he connects in any way to a traditional notion of God, he sure does to your Mom and he wants to go and be with her.  So for him, there is a there there, and he has his heart set on arriving.  Leaving is generally harder than entering, for each of us.”

There was something, well, holy, about the last 15 or 20 minutes. I previously described how his eyebrows lifted up, the way they would when he saw someone who delighted him, and his lips moved as if he were speaking to them. And a little while before that, his mouth, which until then was slack, suddenly bowed into a giant smile. I said to Dean, “Look – he looks happy.” Dean and I had the distinct feeling he was seeing Mom.

As we plan Dad’s memorial service, my brothers and I are sifting for readings that speak to us. Phrases are popping out to me like these:

“Love never ends.” (1 Corinthians 13: 8)

“… the peace of God, which passes all understanding…” (Phillipians 4: 7)

“It is sown a physical body, it is raised a spiritual body. If there is a physical body, there is also a spiritual body.” (1 Corinthians 15: 44)

“We do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. … what can be seen is temporary, but what cannot be seen is eternal.” (2 Corinthians 4:16-18)

“Beloved, we are God’s children now; what we will be has not yet been revealed. What we do know is this: when he is revealed, we will be like him, for we will see him as he is.” (1 John 3: 1-2)

Then I read Dr. Eben Alexander’s Proof of Heaven and found his testimony of his Near Death Experience to be reassuring that consciousness — our soul — lives on after we leave the little bit of this universe that we experience during our mortal lives. 

Talking about the book, my brother, Scott, described to me something that Dad had shared with him when my sister, Midge, was in her last hours, dying of leukemia at age four. Dad told Scott that Midge suddenly sat up and said, “I hear music.” Shortly thereafter, she died.

I know that it feels as if Dad is not gone. And I don’t just mean that his lessons live on in all of us. I still feel his love as a presence. I believe that he – and Mom – somehow exist beyond mortal death.

That love was shared with me in the process of his dying. It changed me during that time that I lived in the small world of his house, where everyone was focused on the mission of easing his way.

What I wonder now is this: as I rejoin the world, how do I keep this feeling of selfless love? Is Jim right when he says: “God is with us, actually inside each of us even when we do not sense it, and remove enough of our own clutter and misgivings and pain to be fully conscious of divine love inside us.”

Leave a comment

Filed under Uncategorized

Tagged as , , , , , , , , , , , , , , , , , , , ,

January 21, 2013 · 9:51 am

“Fathering” and mothering

Henry Campbell and Madeline F. Stone

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1 Comment

Filed under Uncategorized

Tagged as , , , , , , , , , , , , , , , , , , , ,

January 15, 2013 · 5:36 pm

Yet Will I Try the Last

hospice notes and pills

When I’ve hearkened back to the period that my mother was terminally ill in 1999, I’ve always referred to it as “the bad old days.” I was so exhausted — by trying to keep up with the political machinations of my workplace, be some kind of mother to my then seven and twelve year old children, and care for my mother in rotation with my brothers. I’m proud of the work we did to comfort my mother at home, but it gave me a new definition of fatigue. And triumph.

Old age isn’t for sissies and neither is hospice. Even with the phenomenal care we received from Sutter Hospice, caregivers will feel taxed physically, mentally and emotionally. In the final week of Dad’s life, I updated the growing list of daily tasks that his primary caregiver would need to perform or supervise.

It’s hard to find much information about the practical realities of caring for someone in the terminal phase of congestive heart failure (CHF). Our amazing nurses – Diana Skinner, Mary, G.C., Tony and Barbara — answered my questions about what to expect pretty much the same way. They said that CHF and COPD (chronic obstructive pulmonary disease) are tough to predict; it almost comes down to the will of the individual. Having already realized that my father is one of the biologically tenacious, I expected that Dad would continue to fight to the very end. And so he did.

Even on his last day of life, he clung with a vice like grip to the bed rails, trying to raise himself from the heavy blanket of illness and fatigue that had settled over him.

If you are a hospice caregiver and you stumble upon this blog post, I hope you will not be daunted by the myriad details that you may be asked to manage. Your hospice team will teach you every step of the way. You have only to call and they will come. Hospice staff, volunteers and paid caregivers will help do what you cannot. Friends and family will cheer you from afar if they cannot be a part of the caregiving team.

But in the end, you WILL do it. Some days you will wonder if you can, or think you can’t. You will because you were chosen, and because it is in you. Your loved one knows it and needs you.

When doubt creeps in, take a page from my father and recite this passage aloud from Macbeth. Put some breath under it and raise your voice to a rousing crescendo:

I will not yield,/ To kiss the ground before young Malcolm’s feet,/ And to be baited with the rabble’s curse./

Though Birnam Wood be come to Dunsinane,/And thou opposed, being of no woman born,/

Yet will I try the last. Before my body/I throw my warlike shield! Lay on, Macduff,/

And damn’d be him that first cries, “Hold, enough!”

For the record, then…

INSTRUCTIONS Updated Jan. 9

Standing appointments:

Monday, Thursday 8 a.m. : Rebecca the bath lady comes. She thinks it is now best to bathe Dad in bed

2X/week (day varies): Dad receives a home nurse visit, usually from Diana Skinner, RN

Monday noon: Dad has a standing appointment here Monday at noon at the house with Abigail Kane-Berghash, a friend and massage therapist

Equipment

Fill water bottle on compressor with 1” of distilled water daily (usually care staff does this but make sure it doesn’t run out)

Getting ready for the night shift caregiver from Visiting Angels

They are not supposed to measure the medications but they can dispense what we pre-measure.

Pre-measure and set out on the medication log: 4 syringes filled to the ¼ mark with morphine, 2 syringes filled to the quarter mark with haloperidol.

**Don’t take Dad’s hearing aids out until he is in bed; the last thing you will do is swap the leg urine bag for the larger bag that hangs on his bedrail. The hearing aids let him hear you if he forgets what you’re doing “down there”**

OVERVIEW

Risks/issues you are always or commonly managing:

1)   All the normal health problems – with ongoing medications (morning and evening) NOTE: Dad is now getting evening Lasix (Furosemide) in addition to morning

2)   Shortness of breath and back pain

3)   Fall risk especially when he wakes up and thinks he needs to pee or is confused

4)   Bowel movements or lack thereof

5)   Catheter

6)   Agitation if it becomes a disturbance to sleep or comfort – this is now taking the form of hyper-vigilance, worrying about where I am

7)   Dad’s confidence and security – he is happiest if you’re sitting with him J

8)   Eating/staying hydrated

Sutter Hospice

Our regular RN/care coordinator is Diana Skinner but you can get help anytime from the 24 hour #. Hospice is providing:

  • Nursing visits 2x/week (or as needed)
  • Bathing assistance 2x/week – Rebecca (he has not been strong enough to get in the shower since 12/16 so they bathing assistants have been using washcloths, etc. He has also been too tired to shave on his own and I have also encouraged Rebecca to help him shave.)
  • Social work or chaplain may call and check in

Do not call 9-1-1 unless something happens like a broken hip.  Call Hospice if needed. The sad part: if Dad passes away, call Hospice first, too.

Medication

Dad is still taking all of the medications he was before except I am not bothering with the multi-vitamin because it’s big and Dad has enough of a challenge taking the pills when he is short of breath. I have started giving him pills in his room before coming in for meals while he is using oxygen.

He also has a “comfort kit” – see the overview of hospice medications

When Dad gets a new medication related to hospice or new issues, they usually order it electronically from Walgreen’s. The exception is the liquid morphine and liquid haloperidol, which is only available from Knott’s Pharmacy in Carmichael (new address).

Leg catheter

It needs to be dumped every 3 hours or so. If you do not see pee after 3 hours, CALL HOSPICE. It means the catheter is plugged and needs to be flushed.

It gets changed every 4 weeks.

Procedure:

Supplies: urinal and alcohol wipes

You can raise Dad’s pant leg to get at the leg bag

Remove cap

Get urinal in place

Open lever

Wipe nozzle with alcohol wipe

Dump pee – rinse out – spray with Clorox

* How dark is urine is tells you how much to push liquid; it should get lighter during the day but it does not have to be nearly clear *

Shortness of breath and back pain

Start with using the oxygen. Dad doesn’t have to use it all the time.

He generally needs O2 when he is on the john now.

Look for: belly breathing or gasping. Belly breathing = he is pulling in his lower stomach quite a bit and you can see the retraction near the apex of the heart. Sometimes his shoulders go up and down, too.

Worse shortness of breath: gasping and looking afraid, usually with exertion (which can be something as minor as lifting his arms to reach something or folding Kleenex)

Start with ¼ syringe of liquid morphine. See the black mark on the syringe.

If not eased after 30 minutes, give another ¼ syringe.

If ¼ stops being enough and you are always giving it twice, start giving ½ syringe

He can safely have up to 1 full syringe up to once an hour; it’s the equivalent of 1 vicodin.

Dad also has some back pain when we transfer him or if he has been straining in some way. It could be referent pain from congestive heart failure. Treat as you do shortness of breath. Morphine helps with both.

He is generally getting 7-8 ¼ syringes of morphine per day.

The night nurses are finding that Dad needs ¼ vial of morphine 2-3x during the night. He gets short of breath periodically. They also will put on oxygen if needed.

NOTE: Log the comfort medications (including Senna) on the log sheet, and what you gave it for.

Fall risk

Dad forgets that he can’t stand unassisted and he will fall if you are not aware when he wakes up. I am keeping his wheelchair, cane and walker out of reach on purpose. When he asks for them, I remind him that he is not using his cane and it’s not safe for him to get up unassisted – just call for me/us.

He is at especially high risk in the afternoon after a long nap. He also tends to be a little confused and agitated when awakening but has responded to gentle, repeated explanations.

He does occasionally say he wants to get up to pee at night but the night staff is right there and listening for him.

TRANSFERRING – really important

Have the care staff do it if they’re here, with you on “backup.” I prefer to have 2 people on hand.  USE THE CHAIR LIFT IF DAD IS IN THE RECLINER.

NOTE: He uses the wheelchair at the kitchen table because it has arms and it reduces the number of transfers.

**The big thing is to have the wheelchair at a 45 degree angle next to the recliner or bed, as close as possible, so that this is a pivot move.** Position one leg in between his. Your other leg should “lead” and be in front of where you are moving. Explain to Dad – every time – that he should try to push himself up and then you will bear hug him and “dance” into position. He is hard to get into a fully standing position and may be dead weight.

The hardest transfer is off the john. I now have a booster seat and that helps. The big problem is that he grabs the door and you get stuck in mid air, yelling at him to let go! [Update: I removed the door!]

Bowel movements

The primary medication that he is taking to try to keep him regular is Senna. It’s a gentle laxative – nowhere near as dramatic as Milk of Magnesia.

IMPORTANT: YOU SHOULD HAVE A BACKUP PERSON WHEN YOU MOVE DAD TO/FROM THE JOHN – HE TRIES TO GRAB THINGS AND IT’S DANGEROUS IF YOU TRY TO PULL DOWN/UP HIS BOXERS ALONE. IF YOU ARE ALONE AND HE HAS AN URGENCY, USE THE COMMODE. YOU CAN SEAT HIM BACK ON A TOWEL (WITHOUT HIS PANTS) IN HIS RECLINER IF NECESSARY FOR SAFETY.

We shouldn’t expect Dad to have a regular schedule like he has before. He’s had bowel movements at 5:25 a.m., 1 p.m., 5 p.m., 9:25 p.m., etc. You keep increasing Senna (adding in 1-2 glasses of warm prune juice) each day that Dad skips. Think of it as a reset button every time he has a bowel movement. And you HOLD if you go over the edge to loose stools – then start back with 1 senna the next morning.

So…

Day 1 after bowel movement: 1 senna morning, 1 senna evening

Day 2 after bowel movement: 2 senna morning + 1 glass warm prune juice, 2 senna evening

Day 3 after bowel movement: 3 senna morning + 1 glass warm prune juice, CALL HOSPICE FOR ADVICE, 2nd glass of warm prune juice at lunch, 3 senna evening

He can receive up to 4 senna tablets per dosing schedule, 8 per day but I’d talk to hospice before you do that.

Hospice may come out for a physical exam. There are “ultra absorbs” in the armoire to put under Dad. They put him on his side for this procedure. I help him stay on his side.

Agitation

Agitation now usually takes the form of Dad insisting that needs to get up to pee (or wants his cane) or perseverating about where I am.

Distraction is working OK during the day. For the peeing focus, keep explaining that he has a catheter and/or drain the urine bag. It’s more important to manage the agitation at night so he gets a decent rest. Haloperidol is preferred when this occurs at night.

Lorazepam is used for anxiety. Haloperidol is, too, but it is best when you can’t distract the person or get them off of whatever they’re perseverating about. During the night it isn’t possible to use reason/distraction, so haloperidol is the drug of choice for agitation at night.

Haloperidol dosing is just like morphine, and it’s liquid. Start with 1/4 syringe. If that doesn’t work, give a second 1/4 syringe in a half hour. It should make him sleepy.

To repeat what I said above, if morphine is being used to manage back pain or shortness of breath, it can be used in conjunction with Haloperidol.

Dad’s comfort and security

Really, he just wants to be in company with us – which these days means hanging out in his room with him and trying to be interested in what he’s watching when he’s awake. Or sitting at the table with him.  This is a scary time.

Eating/staying hydrated

I haven’t really been worried about food. His appetite is about ¼ what it was. But usually one meal per day gets eaten more. I think he’s getting enough food.

I encourage “small bites” – cookies or milkshake or toast – in between meals, if he’s awake.

I haven’t yet pushed Ensure. I do think his nutrition is adequate.

On the other hand, he is tending to drink too little, especially on a “sleepy” day so push fluids off and on.

DAILY ROUTINE – to the extent there is one! This is what I’ve found works best but you can try whatever you like.

6:55 a.m.        Rise and shine for you! Relieve the night staff

Find out how the night went/review the medication log

Hang out in the living room — make coffee

7:45 – 8:00    Most mornings you will hear Dad stir

He generally waits until 8 to call that he’s awake

8:00                Give him his hearing aids so you can talk to him; open the blinds

Ask if he’s in any pain

If he is, give him ¼ syringe morphine and give it 15 to kick in

Have him wear oxygen – it exerts him to sit up

Swap the night bag with the leg bag that attaches to the catheter

Raise the head of the bed a little, help him sit up and get his feet on floor

Leave boxers on (keeps catheter from being jostled); get clean T shirt, button down shirt and sweat pants. Put pants on just to knees (you’ll pull them up when you help him stand and transfer)

**I am now using the slippers full time instead of socks and shoes**

With a second person (ideally), transfer Dad and pull up his pants at the same time. Give him a minute with the oxygen to recover.

Give him his pills in his room while he is on O2. I now give them to him in batches; otherwise he gets too short of breath.

Put his glasses in his pocket.

Care staff will make Dad’s bed up – but push it back toward round table to give yourself room for transferring to recliner after breakfast

Breakfast:   Usually oatmeal or bacon and eggs in kitchen

Coffee: warmed milk with sugar

Prune juice (warmed) if he didn’t have a bowel movement yesterday

The usual – read the paper, coffee, etc.

This is his best time of the day for socialization! Try to converse a bit.

Around 10 or 10:30

Head back to the room to nap

Check urine leg bag

Transfer to recliner

Put feet up and cover him with blanket

He should probably use his oxygen for a while after moving

He will likely sleep for a couple of hours

If he takes oxygen off, but starts being short of breath, I put it back on

**If he sleeps until 1:30 or so, I may awaken him and suggest drinking apple cranberry juice, which he likes. Note: Hospice says it is usual to sleep more in the last 1-3 months of life and this is part of the process of letting go. They suggest letting him sleep.**

If it’s nice out and he doesn’t sleep as long, transfer to wheelchair and get some fresh air outside.

He has generally not needed morphine during the day – but there are “bad days” and it’s hard to predict

Around 1 or 1:30

Dump urine bag

Transfer from recliner to wheelchair

Encourage lunch – he may need O2 if breathing is difficult

Best liked right now: open face cheddar cheese sandwich + tomato soup

Prune juice if day 3 after BM

He will probably sit at the table for a while – this is also a good time to try to engage Dad

3 or so          Return to room

Check urine bag

Repeat drill to settle in chair for afternoon

**Awakening from nap is usually most confused period of the day. Be especially cautious about watching him for trying to get up**

5                      Think about dinner/do prep as needed

Dinner – He did have lamp chops – the kind with the rib “handle”on Christmas eve. Favorites: mashed potatoes or baked potatoes (still).

Chocolate cake and milk. I don’t give prune juice at night.

Give evening pills in his room while he is on O2.

6 or 6:30        Dinner

If Dad has not had morphine, I usually offer a little red wine (habit/tradition)

Brushing teeth after dinner

He is too tired to do it later, and he can’t stand

We’ve kind of figured out a routine where he stays in the wheelchair and I hold my hand mirror while he brushes; then I hand him water and hold another glass for him to spit. He like to floss first and do the tooth brushing in 2 increments: first upper (spit), then lower

TRANSFERRING AFTER DINNER:

Knowing that we will be undressing later, I usually pull Dads sweatpants down in the transfer after dinner, then cover him with a blanket (and put socks on)

TV after dinner: Dad doesn’t seem to want to watch anything but Military History Channel and CNN but you can surf around or look at “recorded TV” (button on remote) and see if there’s something you might enjoy

He will usually sleep in his chair around 8:30 but stay with him – he will awaken off and on and may start to undress

9:15                SET UP ROOM FOR NIGHT:

Move bed as close as possible to chair to minimize transfer distance

Dump urine

** I usually have the night care staff help me get Dad undressed for bed, and then transfer him **

9:25                Doorbell rings – night staff

Get undressed for night – throw t-shirt and sweatpants in wash

Night staff will work with you to get Dad into bed;

Use the half sheet to adjust or boost him if needed

**Swap out overnight bag for leg bag**

Probably a good idea to start with oxygen after exertion of moving

The night staff know how Dad likes the lights; PUT THE CLOCK ON SMALL TABLE BY HIS BED

They will need help moving the living room chair into place by his door.  9:30  GOODNIGHT!

1 Comment

Filed under Uncategorized

Tagged as , , , , , , , , , , , , , , , , , , , ,

January 14, 2013 · 10:01 pm

“LOVE” and “NO UNFINISHED BUSINESS”

Henry Campbell and Madeline, 1950

Dad with little Midge, 1950

Today is the day after the day after Dad died. And it feels like a week ago. I slept, really slept, in a spare bedroom at my in-laws, a half mile away. I slept without listening for trouble in the night, and without awakening to catalogue the things that grow disproportionately in importance in my unconscious brain.

Everywhere I went today, the people in my life who had come to know my Dad cried when I told them he had died. Our family internist, Dr. Flaningam, called after work hours to extend his condolences and his compliments for the quality of life we helped Dad to achieve in the seven years since he moved to California.

We removed the medical equipment that helped keep Dad comfortable. As helpful as these things were — the commode, the hospital bed, the oxygen compressor, the nasal cannula, the air bed — I hated them. They represent the rudeness of old age and the torture of dying. I banished them to the garage and tossed out the bedding that served my Dad on his last day. I am still shaking my fist at death for taking Dad even though I know he wanted to be released and I wanted that for him.

Knowing that they were leaving tomorrow, my brothers began to sort through Dad’s things — his hats, gloves, socks, shirts, fishing gear, knives.  I know it made sense for them to choose things they would like now while they are together; Dad, if anything, was pragmatic. He had “good gear” and he would want to see it used. Irrationally, I just wasn’t quite ready for the divvying.

During the day, we reviewed a draft press release that I wrote describing Dad’s accomplishments in the Marine Corps. We picked over this detail and that, but in the end came up with an accurate history that we all could agree to. After we approved it, I sent it to a few newspaper editors.

As dinner approached, I was feeling pretty low. For the first time, I faced across the dinner table and Dad wasn’t there. Bruce and Dean were in his customary spot, the “defensible position” on the far side of the table. I started to cry.

Over dinner, we talked about Dad. The news release focused on the accomplishments that news media might find noteworthy, but what did we really think was the story of Dad’s life?

Bruce said that he felt he got to know Dad better after Mom passed away. “He became my hero,” Bruce said, not only for what he did in the war but for the extremely difficult things that happened to him. “I got to know who he was,” he said.

As we talked more, we concurred that Dad became more loving, gentle and non-judgmental as he aged. Scott said, “When I did something stupid, Dad would let you talk and help you lay out your alternatives. He’d let you pick your course of action, but once you did, he’d back you up.”

We all acknowledged that Dad changed after leaving the Marine Corps. As Dean put it, “Dad was incredibly career focused. He was so focused on achieving the next milestone that he didn’t have time to smell the roses… Once Dad set aside his ambitions, he reassessed what was important.”

We all know what was important to Dad in these last decades of his life. Mom was important…and we were important.

We haven’t written his obituary yet, but we are going to try to write about who he is, not what he did. I capitalized and underlined these two phrases:

LOVE

NO UNFINISHED BUSINESS

2 Comments

Filed under Uncategorized

Tagged as , , , , , , , , , , , , , , , , ,

January 12, 2013 · 8:22 pm

With Love, to the Last Breath

roses

At 6 p.m. tonight, Dad took his last breath as my brother Dean told him that he loved him, and as I read Shakespeare’s Sonnet 130, one of Dad’s favorites. To understand why my Dad loved that particular sonnet so much, you have to appreciate how he “fought for his pants” every day of day of his wonderful marriage to my mother. Not long before he died, his eyebrows lifted up, the way they would when he saw someone who delighted him, and his lips moved as if he were speaking to them.

Dad, this is for you and Mom, thanks to the Bard:

My mistress’ eyes are nothing like the sun;
Coral is far more red than her lips’ red;
If snow be white, why then her breasts are dun;
If hairs be wires, black wires grow on her head.
I have seen roses damask’d, red and white,
But no such roses see I in her cheeks; 
And in some perfumes is there more delight
Than in the breath that from my mistress reeks.
I love to hear her speak, yet well I know
That music hath a far more pleasing sound;
I grant I never saw a goddess go;
My mistress, when she walks, treads on the ground:
   And yet, by heaven, I think my love as rare
   As any she belied with false compare.

Their love was rare, and they are together again. But, dear Dad, I will miss you.

4 Comments

Filed under Uncategorized

Tagged as , , , , , , , , , , , , , , , , , ,

January 12, 2013 · 3:16 pm

Preparing

photo[4]

I am listening to my brother Dean in Dad’s bedroom, “I’m right here with you. I love you.” He’s telling him the story of chukar hunting with our sweet Springer Spaniels, Beall and Katie.

A little while ago I heard Maddie reading a beautiful passage from Kubla Khan, by Coleridge:

“In Xanadu did Kubla Khan/A stately pleasure-dome decree:/Where Alph, the sacred river, ran/Through caverns measureless to man/Down to a sunless sea

So twice five miles of fertile ground/With walls and towers girdled round:/And there were gardens bright with sinuous rills,/Where blossomed many an incense-bearing tree;

And here were forests ancient as the hills,/Enfolding sunny spots of greenery…”

I hope my Dad is imagining himself in a sloop on that sacred river, on his way to his mother, my mother, and his daughter, Midge. Or perhaps out in a field on a frozen morning in Eastern Washington, quietly walking through the stubble of a wheat field.

He is on his way. He took a turn for the worse a couple of days ago, and his heart – that has served him so long and well – just can’t do it any more.

I have set the table in the living room with things that have meaning: the pictures of my mother and my brothers that he has commented on so often in the past week; his college Shakespeare volume that Tommy thought to fish out; a bear from my cousin Louise and her daughter Mary; beeswax candles from my cousin Lynn and her husband, Henry; Remy Martin VSOP brandy; memory books I created for Dad; a collection of his favorite memorized passages; and chocolate, lots of it. Chocolates given by my mother and father-in-law for Christmas; Frango mints that were my grandmother’s favorites; chocolates brought in December by my friend Lisa.

Dad hears us and knows we’re here, though he cannot respond. Other family members arrive tonight and tomorrow. I don’t know what moment Dad will choose to let go; he doesn’t have any experience with quitting.

As Dale Swan, the Sutter Hospice chaplain, said to me, “This isn’t giving up. This is his victory lap after a life well lived.”

What I think I will say to my Dad is what Dad said to Mom as he held her hand, when her heart stopped on May 10, 1999: “I love you. You will be with your mother and Midge. And I will be with you again.”

We will miss you, Dad. I am so incredibly grateful for the legacy of your love in my life.

5 Comments

Filed under Uncategorized

Tagged as , , , , , , , , , , , ,