Tag Archives: family

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.”

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“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

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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.

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“They Were Siblings, Right?”

They Were Siblings

Tonight at the dinner table, as my Dad looked at a picture of my three brothers, he asked, “Scott, Bruce and Dean, they were siblings, right?”

I answered smoothly, “Yes, and they still are,” but my heart skipped a few beats.

That kind of confusion has been accelerating. Awakening earlier than usual yesterday morning, Dad asked me, “Who put me here? Where am I?” And this afternoon he asked, “Whose house is this?” He’s spent hundreds of nights in this house since we moved in six years ago.

He does not seem to be afraid during these periods of disorientation – he sees and recognizes me – but they shock me.

I’ve talked about the physical challenge of Dad’s decline, but I think his cognitive changes are the scariest. I don’t really understand them, and I don’t know what the future holds.

It’s one more thing that I have to find a way to be at peace with, so that Dad can be at peace.

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The Post That Shall Not Be Named

This blog post has alternatively been titled, “Laid Bare,” “Kicked in the Gut,” “Is This a Guy Thing?” and “WTF?” I thought about leaving the prompt, “Enter Title Here,” but that seemed a little too odd.

This post is about how, in the face of loss, differences in personality and coping approaches are laid bare. It’s about family. It’s about needing emotional support and not always getting it. It’s about how we are all human, including my brothers and me.

When my mother was ill and in hospice in 1999, my brothers’ personalities and mine were on full display. One brother responded characteristically by getting organized and applying his keen mind to the problems of medication and comfort; he was utterly reliable, a rock, and a little on the anal retentive side (said lovingly). Periodically his tough outer shell would crack and you could see the anxiety and pain that he held in check.

Another brother seemed to avoid coming around during Mom’s 3 1/2 month illness. He would come be her caregiver if asked, but there was a reluctance. After she died, he poured out his heart in the form of rituals and writing a speech about his memories of her.

From this and other experiences, I have learned how differently people grieve. I place no judgement on it. It just “is.”

We as a family — or as a team of caregivers — are not unique in the variation of our emotions and response.

My fellow member of the Caregivers Social Club (which has a membership of two) went through a health crisis last weekend when her husband, who has Alzheimer’s, was hospitalized with a life-threatening slow bleed in the brain. When we met for a glass of wine Thursday, according to our standing date, we talked about her husband’s sons’ responses. They talked about the brain bleed, the procedure and the prognosis for the procedure. But noticeably absent was any expressed emotion about seeing their father impaired by Alzheimer’s, acknowledgement of their own feelings, or sympathy for how hard this is on my friend — his wife — emotionally. But I know how hard it has been on her. While one part of your brain is whirring away managing symptoms and preventing problems with carefully executed clinical steps, another part is watching, feeling and hurting. She is constantly managing her husband’s emotions with patient reassurance, but most of the time no one is taking care of hers.

This week, I felt like I was kicked in the gut when two brothers cut their plans for visits shorter. Like my friend, I am busy – very busy – with Dad’s medical and physical needs. But I am also a little overwhelmed emotionally as I see new signs of decline arise every couple of days, if not every day. Dad’s not in crisis, but there is a slow-drip of worsening symptoms.

Maybe the mental thought process goes something like this:  Betsy sends near-daily email updates about how new problems have been identified and managed. Needed more caregiver help? She got it. Needed medications adjusted? She did it. Conclusion: “Betsy’s got it handled.”

Part of what has kept me going for the past four weeks has been looking at the calendar to the next date when one of my brothers would come and take over for 5-7 days. Unfortunately, through no fault of his own, the one who was to come yesterday got sick. But oh, did I feel crestfallen.

I wrote an email asking my brothers to start committing to a longer stretch at least once a month. I talked about the physical and emotional challenges, and about wanting make sure that I also spend some time with my husband, who now has my attention and company for a half hour or so before Dad awakens, and about 15 minutes after I come to bed and he falls asleep.

By happenstance on Wednesday night, one brother sent an email shortening his upcoming stay from four days to three saying that he needed to be home. The next day, my brother who had rescheduled his trip from January 4 to January 16 sent an email saying that he was shortening his visit from the requested six days to three so that he could celebrate a family birthday.

I hate asking for help. I really do. I’m a “handle it” kind of woman and always have been. I figure that my brothers know that. I think my emails all but beg for reinforcements.

My friend, Ellen, who I wrote when I was crying and needed to vent, observed that my brother’s email saying he was shortening his planned six day visit to three days contained no expression of feelings. I also thought it was interesting that he didn’t call. Just sent a two-sentence email. The day before, my Caregiver Social Club buddy described the same lack of emotional expression when she conversed with her husband’s sons.

Is this a guy thing? I don’t know. I think it’s a not-here thing and a scared thing. If you’re not here, you don’t see it and can comfort yourself by knowing Dad is getting great care. And a terminal illness – whether Alzheimer’s or congestive heart failure – is scary. Alzheimer’s perhaps especially so because of the genetic linkage (although the sons supposedly don’t carry the same gene).

When family members respond by sharing and pulling together, they grow closer. Unfortunately, the reverse is also true. I’m frustrated, hurt and trying not to be angry.

My hope is that when the brothers visit who have not seen Dad in a month or more, they will get it. They will understand that we need to be a true caregiver team and take turns. And that we each have something to say to Dad, some special kind of comfort that only we can offer. It’s time. Dad needs them and so do I.

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Taking Mom for Granted

Although my mother died in 1999, she lives on in my mind. In not a few of my mental pictures, she is busy in the kitchen in her quilted satin pink bathrobe — the one Dad bought her on one of his last minute Christmas Eve shopping expeditions. She’s sweating slightly and occasionally barking orders like the domestic commander that she was.

My brother and I huddle around a giant stainless steel bowl “picking the bread,” a chore that involved plucking slightly stale sandwich bread into suitably-sized increments for the sage and onion stuffing. We cooperated but were none too happy about it. I am sure I had been told – repeatedly – to get out of my luxurious four poster bed in the dark corner basement room where I would easily sleep until noon, given half the chance. But I wasn’t given the chance as (alas) Mom needs help.

The bread picked, my chores continue, or I should say, “chore.” The only other standing task I remember on holidays was setting the table. Holidays, of course, called for the household’s finest: Grandmother’s heavy silver place settings, Mom’s “Golden Wreath” china, Waterford “Lismore” crystal and lots of silver serving dishes that invariably needed polishing. I’m sure I emitted my share of heavy sighs while getting everything up to Mom’s standards, which is to say the standards of a Marine Corps officer’s wife.

In the meantime, my Mom finished the stuffing, got it in the bird, “jounced” the turkey up and down with Dad’s help to maximize room for the stuffing, stitched up the gaping maw of the turkey’s innards, and started the long, slow process of babysitting and basting the turkey to its golden, roasted peak. Somewhere along the line she prepared the side dishes, although turkey, mashed potatoes and stuffing were all anyone ever cared about.

When it came time to gather ’round the table for grace, a toast, and the ceremonial carving of the bird, we thanked Mom. Or at least I think we did. To be honest, I’m not sure.

I took our delicious holiday meals for granted. I took our lovely home and table setting for granted. I took my mother for granted.

And, as strange as it sounds, I am grateful that I could be so oblivious in my security. One of my mother’s greatest gifts was that she was utterly reliable and predictable in her role as mother. I never had to question whether she loved me, or how she would respond if I did something she approved of, or disapproved of. She was the same, day in and day out. An immutable force of nature.

As I look forward to the holiday tomorrow, I expect that I will be taken for granted. I hope those who I love don’t have to think about who I am, what to expect of me, and how I feel about them.

So, go ahead. Take me for granted. It’s one of the nicest compliments you could pay me as a legacy from my mother.

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Family communication: seeing eye-to-eye through our diversity

Nephews, brother, sister-in-law, niece and Dad – out on a walk

Writer’s note: If you find this blog post of interest, you might want to check out a discussion on the NY Times New Old Age blog in which readers comment about communications techniques they have found helpful – a response to the article, “How Do You Keep Track of It All?”

My brothers and I look so little alike – and are so little alike – that it’s a matter of family jest. The brother who is closest to me in birth order and I once had to show our driver’s licenses to prove we were related to a woman who knew us both yet was unaware that we were related. My eldest two brothers are 15 and 10 years older than I am. The family unit they grew up in – which included a younger sister who died of leukemia in the 1950s – was a different one than the one my younger brother and I knew. It would be easy for us to have different ideas about “what to do” about our parents as they aged.

Instead, we seem to be in lock step.

Going back 15 years, when my mother’s dementia grew worse, and later, as she struggled with late stage lung cancer, my brothers and I evolved a system for communicating with one another. That system reduces stress for my Dad and makes it easier to ensure that he is getting the care he wants – and avoiding the care he doesn’t want. It also provides me with emotional support, and now it seems to be helping my brothers and I to imagine how we will be a family after my father’s eventual death.

That “system” started when my brother who is nearest in age called to suggest that we rescue Dad for a few weeks (by taking Mom on vacation) during the period when my mother had become increasingly agitated. Dad’s angina was increasing as her anger and confusion grew. Later, when my mother was eventually hospitalized and near death, our sporadic phone calls were replaced with much closer coordination by phone and email. We took turns staying with her in the hospital and took notes during our “shift”, briefing the next family member who arrived to sit by her bedside. On at least one occasion, our notes enabled us to correct what would have been a grievous medical error since her chart became so large that it was split in two – and some important information about her medication was not transferred to the active chart. When my mother came home with hospice, we tried to keep one another informed of her status as we rotated for three-to-five day stays at my folks’ house to oversee her care and my father’s recovery from his third bypass surgery.

In the past six years that Dad has lived partly with me and partly in an assisted living apartment, I’ve sent periodic “Dad Reports” to my three brothers with details about his spirits and physical health. Instead of quietly nursing resentment when I felt they weren’t doing enough to reach out to Dad via mail or email, I point blank asked them to step up their outreach to him. Our efforts were greatly enhanced by a “Presto” machine that automatically prints out emails sent to my Dad’s email address, thanks to a gift from my eldest brother.

As I have become more concerned about my Dad’s failing health, I have shared recent blog posts with my brothers, including my long rant after reading Joe Klein’s cover feature for Time magazine, “How to Die.” And it was that most recent outreach that uncorked a cascade of emails from my brothers that truly surprised and moved me. Not only were they aligned around preserving my Dad’s comfort and dignity, but they vocalized a commitment to our family unit.

My first reply came from “brother #2”:

I guess I’ll start by saying that for the past year I have been expecting a phone call from my Betsy or the staff letting me know that Dad had passed – I know that phone call is inevitable, and I know that every time I go up to provide respite for Betsy, I might be the one making that call to the rest of you. Selfishly, I don’t want that duty but if I have to be the one to make the call, I will respect Dad’s wishes. I know that he has lost everything he loved or took pleasure from in life, and has become a dependent. He can’t hear us, and I know it galls him.

Is there value in a rush to the ER? Well, the medical profession can certainly prolong a life that has become burdensome and often painful, but they cannot turn back the clock and give life in abundance. And ultimately, all the tests in the world probably won’t offer much that will give him a more abundant life.

I am conflicted by these thoughts – I like the family we have become and the strength that we siblings have found through Mom’s hospice. In many ways, I think that Dad has been the glue that bonded us all together, and I am fearful of losing more than just Dad when he passes away. But that’s not a reason to withold from Dad the end he wants.”

Then brother #1 weighed in:

(Brother #2) has done a good job of capturing my thoughts and feelings on this subject. And like him, one of my worries is that Dad’s passing will dissolve the glue that has kept the four of us close as siblings. I have the longest experience of the four of us with the reality of Dad’s mortality, going back to when Mom and I drove Dad to the Navy infirmary at Pearl Harbor when he had his first heart attack. I recall well how worried Mom was that Dad wouldn’t come out of the hospital alive, but yet he did, and he has hung on tenaciously for nearly 45 more years. As much as it distresses me, his race is almost run, and he has fully earned the right to let go when he thinks the time has arrived. Like (brother #2), I wouldn’t want him to die in distress, but neither do I think it’s fair to him to prolong his life if he wishes otherwise. 

It obvious that the time is drawing closer to when we will lose Dad, and as prepared as I have been for years for him to die, I still dread the reality. We have all been so incredibly lucky to have had Mom and Dad as our parents, and with Mom gone it will be even more wrenching to lose Dad as well. So, I think we should continue to dialogue about our courses of action and be available for one another. As the oldest sibling, I feel a good deal of responsibility for the three of you, even given the fact that you are all strong adults and don’t need me to look out for you. But old feelings and habits are hard to break…”

And lastly, brother #3:
“I have been acutely aware of Dad’s heart condition these many years, and recall thinking when we were off hunting by ourselves that something could happen anytime.As Dad approaches 96, he has clearly run a great race; he recognizes his time is coming and is at peace with that. I have always believed his end would come with a final MI/cardiac arrest; but who knows. Should we find ourselves in a situation where hospice is appropriate – perhaps the heart failure finally becomes unmanageable – then hospice would  be a good choice, and without further intervention other than palliative. On the other hand, if a condition presents that can be reversed or managed to maintain quality of life then I agree the right thing would be to obtain the care.
I agree with (brother #1’s) observation that Mom and Dad helped us to form a strong family. It’s unimaginable to me that we would somehow fall apart after Dad is gone. I enjoy being with each of you and will always love all of you.”
Not only did I find my brother’s emails restorative, but it gave me hope that we will find a way to enjoy one another into the future, despite our differences. Without this effort to communicate with one another, I am certain that the future would have seen us drifting apart, separated not only by physical, but emotional distance.

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