Tag Archives: hospice

“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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I’m Not Alone

morning candles

It’s been almost seven years since I moved my Dad to California, knowing that his cardiac disease was catching up with him. We’ve had quite a few scares since then: a small stroke that temporarily interfered with his ability to speak, a strange seizure, numerous falls and illnesses. During one of those scares, my husband was in Mexico, unreachable, and I was alone at the hospital with Dad, afraid.

I hate being alone when Dad’s life is at risk. I can handle the decisions that need to be made. I can handle the physical challenge of the long hours. I can be strong for Dad so that he is not afraid.

But I want to be able to cry and have someone to hold and comfort me when am afraid. I just don’t want to be alone.

Yesterday my first morning thought was of all the people who are, as one friend puts it, “holding me in the light.”

In recent days, I have heard from a college friend with whom I have been out of touch in recent years. My spiritual and artistic cousin, Lynn, has become the angel who perches on my shoulder with frequent, loving messages, like this one:

Whenever I read your ardent posts as I did just now.. and look at your exquisitely poignant and palpably tender photographs.. I am reminded again and again of the Rumi stanza..  that I am sure you are familiar with but I can’t help writing:“Let the beauty of what you love be what you do.” –Rumi    

 Mostly, I want you to know this New Year’s eve that even though it may seem I am in the background I am a part of that large net beneath the high wire you are walking– where by the way, you are dazzling in your diamond light.  I am not quite breathing with you, but almost…

My dear friend, Lisa, who spent the day on the 18th hanging out with me and cooking for me, is in Italy with her family where she is lighting a candle in every church she encounters. When traveling, Lisa normally devotes her laser-like focus to something food-related, like tasting lentil soup in Turkey, but on this trip, she says she is thinking of Dad and me. She wrote:

It is making me feel slightly better — but marginally so — wish I could be with you to help you through this important time. Your dad is a great man, and you are the best daughter and friend anyone could hope for. Miss you.

Yesterday I wrote my oldest friend, Ellen, about how she had rescued me when we met as lonely adolescents. She wrote back:

I have loved walking this current path with you. I have felt your sadness and pain. I have cried with you. I have wondered, and asked, and railed with you. I have grown with you. I have deepened and broadened who I am with you. I want to be there with you, but also know that you would be caring for me, and worrying about me, while at the same time you are caring and worrying about everyone else in your life. It’s your nature.

This is a hard path. But it’s far harder on Dad as he struggles. The love and support of family and friends makes all the difference. It holds me up so I can hold him up.

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Taking Stock of My Journey with Dad

Henry Campbell Dec. 23 2012

I’m one of those people who likes to take stock and tidy up as the new year approaches. But instead of cleaning my office as I have in years past, my attentions are here on this blog. Looking at the “About” description, I realized how its content has changed as Dad has aged and weakened. It started as a celebration with a few funny bits and occasional bits of advice thrown in. I wrote from the head, thinking, how can I capture useful insights from this experience for me to remember and for others to benefit from?

Last summer, as Dad’s health began to fail, I started writing from the gut. I wrote about my experience, about feeling vigilant, not just about Dad but about everyone in my life. I wrote about not sleeping. I felt a little like a mother hen trying to keep the chicks safe in the nest.

In the process of seeing Dad start to slip, I became more aware of and grateful for family and friends, especially my amazing husband of 30 years. My post on our anniversary, “30 Years of Opposites: Happily Ever After,” became my most-read post of the year, with over 300 views.

In October and November, The Henry Chronicles took on a more somber tone with the loss of my “other mother.” In the last month, my posts have expressed my desperation to turn things around and my anger at God when I could not. Without planning to do so, I find myself writing almost daily in the quiet hour after the night caregiver leaves and my Dad calls out that he is awake and ready to get up. One morning I thought about all of the people who have been supporting Dad or me, and I said thank you to “Team Henry.”

I’m no longer trying to be smart or useful. I’m just trying to get through this time with as much strength for Dad as I can. I keen online because I can’t help it. By releasing the terrible pain and fear that comes with caring for someone in the last months of life, I feel better. Maybe it’s self-therapy, online.

I do draw great comfort from the small company of friends and followers who read my little posts and share their own experiences, or offer a supportive word. I’m kind of amazed that, in this frenetic holiday period, people are willing to read something that isn’t about the fun of the holidays.

I may be hanging on by my fingernails, but I am hanging on.

The “About” page now ends with: These days, this blog is about coming to grips with the impending end of his life, a search for faith and understanding, and a longing for strength so that I might offer him the same unconditional love that he has always given me.

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The Petty Jealousy of the Paper

Sunday papers

It’s Sunday morning and the front paper is mine. My nighttime caregiver awakened me at 5:45 a.m. saying she needed help getting my Dad to the john, which takes two people to do safely. Just a few months ago, I would have gloried in having the paper to myself for 90 minutes.

Until this winter, I rose every morning at 7:30 a.m., made coffee and stepped out on the front porch to retrieve the paper, quickly noting the weather before brushing off the grime caused by runoff from the planter.  I devoured the headlines of the New York Times, knowing that Dad would latch onto it as soon as he came out for breakfast. I was jealous of these few moments alone, when I was in control of my time and my paper, if only for 20 minutes.

Then I heard it: the snap of the brake release on his walker, the slow sibilant shuffle on the wood floor, the clink of the lever that flushed the john.

But on the days when 8 a.m. came and went with quiet, I wondered, “Is this the day?”

Fifty years after the first of Dad’s three heart attacks, I started every day steeled against the possibility that I would find Dad dead and that he would not awaken again, not ever.

I feel awfully small for that little jealousy over the paper. The prospect of losing Dad soon is no longer possibility or probability. It’s near certainty. (When you’re talking about a man who has survived Iwo Jima, three heart attacks, three open hearts and three strokes, you learn not to place bets on prognosis.)

Yesterday I read through the booklet that Sutter Hospice gives you when you are admitted, “As the End of Life Nears: A Caregiver’s Guide.” I read this:

As your loved one begins to accept his or her own mortality, you may notice that they start to withdraw physically and emotionally from the ‘outside’ world. A person who once loved television and the newspapers may cease to enjoy these activities. In addition, he/she may not want to interact with people. You may even notice a steady withdrawal from people the patient loves most. Withdrawal from the outside world is a natural part of the dying process…. (H)e/she will most likely begin to sleep more…. This is a normal process and even though your loved one is asleep, important work is being done on the ‘inside’ in preparation of the transition from this life.

I wrote to my friend Jim, “I have been worrying about him sleeping too much and becoming dehydrated. You’ve written all those great words about the descent/ascent, the bridge, etc., and I took it in but I don’t think I really thought I was there now. But that’s were we are, isn’t it? He is withdrawing. It isn’t just my brothers who have to let go. It’s me.”

And Jim responded:

Sleeping is sweet.  Think about how treasured one’s naps are.  It is just his biological body adjusting and slowing down.  It is about letting himself accept his body doing what it needs to do so his spirit can be set free.  Honey, it is the way for each of us. You are providing an environment and space for him to to do this without judgment or demands. 

It is NOT about letting go. It’s about telling him he can fly to where he is meant to go, and that you will never let go of him in your heart.  I promise you he will be in your heart until the day your spirit treks along with his.

It’s about loving him so he can let go of this human experience.

Betsy, of course you can let him be born anew into eternity.  You let your kids be born into this world. You’re helping him be born again. It is not easy; it is not without labor pains.

He is withdrawing not from you but from this reality, so he can be in another one and still be very alive in you.

Stop picking on yourself. Just be present; open your heart to everything non-rational, and be open to him claiming his own eternal destiny.  Your heart will break: love knows not its own depth until the hour of separation.  But our faith suggests Easter is an ever present reality, as he will be for you the rest of your life.

While you sleep, Dad, I’ll read the paper, but I’ll be thinking of you in your dreams, flying to heaven.

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My Back and Forth Faith

pendulum

Last Sunday, I shared how generally pissed off I was with God. If I learned anything from marriage counseling a dozen or so years ago, it’s that arguing isn’t a bad thing. In fact it’s healthy. It’s how you argue that matters. Do you argue to hurt, or to be heard? Do you listen as well as assert?

On Christmas, Maureen Dowd published a column about losing her friend Robin and Father Kevin O’Neil’s meditation on dying.

I underlined two of Father Kevin’s phrases in particular:

“A life of faith is often lived ‘back and forth’ by believers and those who minister to them.” and…

What I do know is that an unconditionally loving presence soothes broken hearts, binds up wounds, and renews us in life. This is a gift we can all give, particularly to the suffering.”

Back and forth, that’s me. At times in my life, I have felt the presence of God directly. I have asked him for what I want and need, although perhaps he heard the longing of my soul even more than my words. And He answered. At other times, we have been estranged. And recently, we’ve been fighting.

Although it appears Dad is not going to rally – as he has time and time again – he is comfortable, and I am settling in to his new reality and mine.

As friend Jim says, “So glad you are ‘turning it over’.  Remember, the descent (which I prefer to call the path to ascent) is like going down steps of a stairs.  Sometimes one by one, and sometimes several.  Nothing you can do about this but be present and loving.  It is nature and his human body with his spirit trying to discard it so it can move forward.”

A prayer, then:

Help me, God, to be fully present

Help me to feel calm so that I can calm my Dad

Help me to radiate so much love that it warms him to his toes

Help me to support the others who love him on this awful journey

Help me to understand

Help me to love

Help me

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Ceding Control

Henry Campbell, Christmas morning 2012

My dear “Caregivers’ Social Club” buddy called yesterday after taking her husband to the hospital. Acutely aware of his advancing Alzheimer’s, she had felt something was wrong and then noticed a sudden downturn in strength. She learned that he has had a slow bleed in his brain for some time.

She was filled with recriminations for herself: How could she have missed it? How could she not have listened to her growing feeling that he was “off?” What if she had figured it out sooner?

We are the careful caregivers. The careful caregivers are observant, especially when it comes to the primary focus of our attentions. We aren’t doctors but we could play one on TV. We rack up successes: bladder infections we caught early, raspy noises that turned out to be pneumonia, disabilities we were able to reverse by advocating for physical therapy. We dance in front of disaster.

Then one day, we can’t dance fast enough.

It isn’t that we don’t want to, or haven’t tried, or aren’t good at it. We’re champions at it.

We butt up against the irrefutable reality of a chronic illness that ultimately goes only one direction: down.

Crossing the threshold of hospice represented a change in care for Dad, but it also signified a change for me. Though still vigilant, I stopped fighting and accepted where Dad’s journey is going. I am putting supportive care in place so that I can focus on loving him and listening to him rather than trying to fix everything.

I am not giving up, and I am not giving in. I am giving it over. With four visits from a hospice nurse in six days, I have a clinical partnership to help address symptoms as they arise. I am coming to terms with God’s role in all of this – though I still don’t understand how this difficult process of dying is a great plan. I am beginning to recognize that I am not in control of the speed or shape of this final journey. I am no longer fighting but I am not beaten.

Today I am praying for my dear friend as she faces a difficult decision about whether to approve surgery or not. She’s a careful (and loving) caregiver, and she wants to make it right.

To C: I am with you, my friend. There is no “right decision” here and it may not even be possible to discern the best decision. I wish I could say, “You’ll know what’s best.” But that’s one of those things people say that isn’t always true. Surgery or not, the future is a bitch. You will pick the least worst of the choices ahead of you. You will keep in mind what is kind, and ethical, and what your husband would want. This is an awful decision to face, one you never anticipated and one you could not have prevented, even as careful as you are. I love you. Call me if I can help.

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