Tag Archives: seniors

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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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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Dear God, You and I Need to Talk

Dennis Armstrong, the Sutter Hospice social worker who comes by after you’re 24 hours “in service,” asked me, “Does your father have a faith or belief system?”


godtalkstoyou.com

It’s complicated. You see, Dad says conflicting things. On the one hand, he says that he wishes he could believe in God but he doesn’t. On the other, he has talked about seeing Mom after he dies. And about how God let Mom down when she was dying. “I’m afraid,” she said at one point in her illness. If there is a God, Dad wondered, how could he abandon her in her moment of need? I’m sure he was also flashing back to losing my sister, Midge, to leukemia at four years old. He used to talk a lot about the pain of losing Midge. It’s even harder to understand God’s hand in that one.

My beef with God is different. I understand that it’s really hard work getting born into this world; I have the mental scars from back labor to prove it (thanks, Maddie). I don’t think it’s fair to work so hard to get out of it. Why do people have to become feeble and go through pain and discomfort before they make their exit? Did God figure that people would just hang around too long if it was pleasant at the end, and end up overpopulating the world?

I realize my own relationship with God is a little iffy right now. I usually talk to God when I go to bed. I thank Him for the amazing people and things in my life, and I ask him for what I want and need. Releasing Dad has long been a prayer of mine.

But I’m a little bit pissed off this morning knowing how tough things are for Dad right now. I’m working on it, God, but I really don’t understand how this is such a great plan.

An old family friend, Bruce Wheeler, shared a favorite Bible quotation of his: Rom 8:31 “If God is with me who can be against me?”

Are you with us God?

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I’m Dreaming of… Strange Things

Dreamscape in Cappadocia by Betsy Stone

I have not been dreaming of a white Christmas.

My friend, Collette Johnson Schulke, pays close attention to dreams in her own journey as a caregiver. I don’t think you need a psychiatrist to interpret several of my recent dreams:

  • I boarded Amtrak to San Francisco, and knew that my husband was already aboard. But the train was already so packed that there were no seats so I couldn’t sit or even be in the same train car as he was…
  • I was in a city downtown and I had to get from one high-rise to another high-rise. The only way to do it was to walk a tightrope….
  • I was a journalist writing a story about mining operations deep underground. I went down 24 floors and entered a hatch (like that on a ship) and saw people in suits intended to protect them. To my left, a team was doing a safety drill in which they had to jump off a ledge in a weighted wheelchair, drop the 10-12 feet to the stream bed of an ice cold underground spring, and roll across before emerging up the far sie — a test of their ability to survive without oxygen in extremely cold conditions.

Hmmm… let me see… facing extreme conditions… feeling like I am walking a tight rope… and feeling sad that there was no room for me or proximity to my husband. Gosh, what could these dreams mean?

Hospice came aboard yesterday. No such dreams last night. I feel much better about Dad getting what he needs, and me, too.

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Dear Hospice, Thank You

Dawn in Sacramento

My father was admitted into Sutter Hospice today. All at once, I was sad and relieved. As my brother, Dean, said:

Glad to hear this. Don’t exactly feel like celebrating but definitely relieved to know we will be able to manage his symptoms better.

Exactly. I wish this wasn’t something we wanted or needed for Dad, but I know hospice will provide him with the best possible care.

Several people have asked, “What does hospice give you that you couldn’t get without it?”

Frequent nursing visits in the home so that you don’t have to drag your loved one to the doctor when symptoms develop. Medications (more types, and stronger) that work better for symptom control when you can’t fix the underlying problem with surgery or  procedure and physicians aren’t worried about long-term consequences. Equipment that helps to prevent more pain and problems, rather than address them once they’ve developed. 24/7 access to telephone advice from a nurse who is really knowledgeable about serious illnesses. Some volunteer support for respite. Professionals who visit with the person who is ill and his/her primary caregiver(s) to provide moral and spiritual support. In short, a whole gang of people who actually talk to each other so that you don’t have to chase down the support you need.

I’m not ready to think about “the end,” but I know it’s not in the distant, unimaginable future. I know hospice is a comprehensive form of care that will help to make my Dad’s present more worth living.

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Dear Hospice – A Plea

At the table with Henry Campbell

Dad’s still got a smile on his face in this picture, but if you know him, you can tell it’s a little more forced. I’m writing you – dear hospice angel – to say that I hope you will admit Dad into your program this week. When I’ve raised the possibility, every clinical person I’ve talked to this week has gone on at some length about how hospice isn’t what people think: it’s not “giving up”; it’s not stopping care. Then they explain that hospice is better care.

The thing is, my brothers and I know that. My mother was in hospice care for late stage lung cancer from mid-February until May 10, 1999. We know what you can do. We know why people donate to hospices: you may not be life-saving, but you are quality of life-saving.

I want to be able to step back from trying to figure out how to make Dad comfortable and just be his daughter. I know you will be a hell of a partner in this. This is what my dear friend Jim Jennings wrote me about the task ahead of me now:

All you have to do is just be with him — the Hospice team will keep him comfortable.  Keep this image in mind:  you can hold his hand and mother/daughter love him all the way up to the bridge over the river of life, but then he has to let go of your hand, and you of his, so that he can walk over that bridge on his own with his back turned to you and this world you share, into the world you will share together in eternity.  Tis the way for all of us.

He may, like others sometimes do, dwell on the bridge for a while, seemingly here and seemingly not here.  Some folks take their time.  If he gets to this point, just keep telling him you love him and it is OK to go — that you and your brothers will be OK — very important each of you tell him at some point it is OK for him to be on his way. Stay focused on each day and the little things.  You know, you have to help birth him into the larger life. Turn it all over to Love Divine.

Life is really hard for Dad right now, and it’s getting more painful. He struggles for breath most of the time, which is making it harder to eat and drink. His heartbeat is irregular despite being controlled with medication; it’s working awfully hard. He can still walk with his walker to the kitchen table in the morning, but by the end of lunch, he isn’t strong enough to do so. He hasn’t been strong enough to stand and step over the four inch threshold of the shower for two weeks. His beard is growing in mostly white because he’s too tired to shave: something a Marine Corp Col. Ret. hates to skip. By afternoon, transferring to the wheelchair or the John is a bear. He’s eating less chocolate cake. If you know Dad, that’s the biggest indicator of all.

I talked to Dad yesterday about whether he wanted to seek admission into hospice. His comment? “Makes perfect sense.” He has been saying since summer that he feels he is finished here. He asked, “Do we have any unfinished business?” No, and neither does he. He told me this week that he has lived a good life and “done some things right.” He’s always grateful and surprised that I am here for him, 100%.

But that’s his legacy. He loves me unconditionally, and always has. I love him back the same way.

Dear hospice,

Please help me love my Dad, now, the way that I want, by supporting my brothers and me in caring for him.

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The Circle Closes

Silent movies used to use a particular edit to denote finality: a circle that grew smaller and smaller until everything went to black. When Looney Tunes lampooned the technique, Porky Pig suddenly squeezed through the shrinking circle, to stutter “That’s all folks,” before popping back into Toon Town, the window closing behind him.

I’ve often thought of the end of life in those terms. The past few weeks,the circle has been closing.

With an underlying diagnosis of congestive heart failure, and the instinctive discipline of my Dad, it’s been hard to predict how the final years of his life might go. My Mom’s terminal lung cancer had a pretty known trajectory; although she was given weeks to live, she lived nearly four months, but either way – we knew it wouldn’t be long, and it wasn’t long.

Every day now gets a little tougher. Dad is growing weaker. He sleeps more, and sometimes is not strong enough to stand and walk. He is very short of breath even at rest, and eating and drinking is becoming more difficult. His heart rate is lower and becoming irregular, and his blood pressure is up. He is working hard just to breathe and talk.

So I wonder, perhaps for the first time: are we now in the final period? I won’t call it the home stretch because there’s nothing homey or relieving about it. I have been with two people when they died, and it was hard work for them, leaving this world, even with great comfort care.

A week ago, my brothers were worrying about Dad’s dignity as he left the ER with a catheter. One of them said it was “one more blow.”

Funny, as Dad has needed more personal care this week, dignity hasn’t felt like a big issue. Words from Tuesdays with Morrie came floating in to my head, so much so that I dug the book out this morning:

“Mitch, it’s funny,” he said. “I’m an independent person, so my inclination was to fight all of this — being helped from the car, having someone else dress me. I felt a little ashamed, because our culture tells us we should be ashamed if we can’t wipe our own behind. But then I figured, Forget what the culture says…. I am not going to be ashamed. What’s the big deal?

“And you know what? The strangest thing.”…

“I began to enjoy my dependency. Now I enjoy when they turn me over on my side and rub cream on my behind so I don’t get sores. Or when they wipe my brow, or they massage my legs. I revel in it. I close my eyes and soak it up. And it seems very familiar to me.

It’s like going back to being a child again. Someone to bathe you. Someone to lift you. Someone to wipe you. We all know how to be a child. It’s inside all of us. For me, it’s just remembering how to enjoy it.”

Hundreds of times, my Dad has said to me, “Everyone needs a mother.” Everyone does.

I am hoping that I can do what mothers do in these final stages: make the boo boos feel better, and chase the nightmares away.

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Love and Buckwheat Pancakes

Buckwheat pancake on the griddle

My brothers and I all have our ways of demonstrating love for Dad. And right now Dad can use all the TLC he can get.

My brother, Dean, whipped up a batch of one of Dad’s favorite confections this morning: buckwheat pancakes.

My kitchen smells like stale beer the morning after a fraternity party. These grainy pancakes, tasting of yeast and looking like dirt, are an obsession that escapes me. “It’s an acquired taste,” Dean says. I guess.

I may dislike the smell and hate the taste, but I love these little rituals that my brothers bring with them when he visit. Dad eats it up. Literally.

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Saying goodbye

While my “other mother” was lying in her hospital bed at St. Joseph’s Medical Center 10 days ago, in between periods of stark awareness, my mind kept rewinding and fast forwarding. I rewound to a night thirteen years ago when my mother was in a different bed in St. Joseph’s, fading in and out of lucidity following procedures that first discovered her late stage lung cancer and then sought to repair a hole in her lung so that she could go home with hospice. But I was also fast forwarding, imagining the day that I will hold my father’s hand while he struggles to leave this earth. I think that’s how it is for many people: when we lose someone we love, we also think about the others we have lost, and those who we cherish and are losing.

I almost published this journal entry from February 16, 1999 just before I headed up to Washington state. When I returned Monday night, it was the first thing I saw on my desk:

Last night, I spent the night with Mom at St. Joseph’s Medical Center. Two-and-a-half weeks into her stay, following her diagnosis of lung cancer, she was for the first time completely lucid.

At about 9:45 p.m., Mom was looking at the ceiling. I asked her if she was thinking or looking at something. She replied that she was thinking.

Over the next hour, in quiet and measured tones, she said goodbye to me. She began by saying, ‘You’ve been a wonderful daughter.’ After a few minutes, she added, ‘You’re a very competent woman.’

I realized that she was beginning to say goodbye. I wanted to tell her how much she meant to me but the words seemed so inadequate. I told her she was a wonderful mother — strong, loving and nurturing. I remember once, when I was quite old, that she had responded to my sadness by pulling me on to her lap in my Nana’s rocking chair.

I hugged her and apologized for crying. She said, ‘Why not?’ Then she said, ‘You are a beautiful daughter; now get some Kleenex and blow your nose.’

After a few minutes she said, ‘We’ve had a wonderful life together. Sons are special but there is something very important about a daughter.’  She tried to express her thoughts about what makes daughters different and struggled a bit with the right words. She said, ‘Daughters are more emotional.’ It seem to me that what she meant was that daughters are close to one’s heart in a different way.

I said to her that my brothers had been wonderful throughout her stay. I told her they had comforted her and been loving and compassionate. I told her that we had not left her in the entire 2 1/2 weeks. This seemed to surprise her. I added, ‘We didn’t think you would want to be left alone.’ She said, ‘You were right,’ and smiled softly.

She said that her grandmother was in her late 90s when she died and that she couldn’t remember how old her mother was when she died. Implicit in her remark was her consideration of the age she would be when she died.

‘It’s one of the hardest things you ever do to say goodbye to people you love,’ she said, ‘but it’s important.’

I asked her if she was worried. She said, ‘Not exactly.’ I said we loved her and would be with her every step of the way and that God was with her.

She asked, ‘How is your Dad handling all of this,’ glancing at her hospital bed and surroundings. I said that he was sad because she is so precious but that he was okay and taking care of himself. I said I would take good care of Dad.

She said, ‘I’m going to outlive your Dad,’ and then she added, ‘at least I think so.’ Then she reflected for a while.

I commented on her strength and said that we were raising another strong woman in Maddie. She agreed and added, ‘And Tommy is wonderful, too.’ I reminded her what she had said emphatically to Maddie that morning: ‘You know what? I like you.’

Finally I asked if there was anything I could do to make this easier. She said, ‘Well, one thing you can do is continue to be the marvelous woman that you are — competent, with a high level of activity, a very high level of activity. The world needs you.’

She drifted off to sleep. Not long after this was written, she did make it home with hospice. She passed away the day after Mother’s Day, on May 10, 1999. I miss her.

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