Now For the Heavy Lifting

Dancing with Dad

I can’t believe it’s only been a week since we’ve been on hospice. So much has happened, and things have changed so rapidly.

Nine days ago I wrote my plea for hospice. The next day, I wrote my thank you. I also wrote things like this to my brothers:

Dad isn’t doing great, but I do think he will stabilize with the tender ministrations of hospice. These people are GREAT with comfort care. Statistically, people with advanced illness live longer with hospice than without hospice. He could well rally and “graduate” from hospice (be kicked out of the program). Or he could continue to have accelerating problems. 

The day after I sent that message, my Dad stopped being able to walk. He walked to breakfast with his walker in the morning, and by afternoon, his legs were unable to support him. My carefully laid plans about the period ahead were shattered. Some time ago, I wondered what I would do if my Dad got to the point my mother did, when she needed to be physically lifted from her chair, to a wheelchair, to bed. I had said to myself, “I don’t know what I’d do if if my Dad gets to that point.” After all, my Dad weighs 200 lbs.

Now I know.

I rapidly went from expecting to need night time care, to needing afternoon respite, to needing almost 24 hour care. It isn’t safe for my Dad or for me to transfer him alone.

Hospice told me that their preference is for Dad to be in bed if he can’t assist with transferring by pushing himself up with his arms and helping to stand. But I just can’t face him spending the rest of his life – short though it may be  – in bed. He’s too “with it.”

So we are settling in, and making adjustments to keep him – and me – safe.

Long ago, I danced on my father’s shoes and he kept me from stumbling. Now we are doing a dance of a different kind, as I raise him to his feet and we shuffle together to the wheelchair, bed or chair. It may not be the graceful father-daughter moment that we had when I was five, but it is still sweet. I will not let him fall.

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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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A Christmas Album, Shared with Dad

Rainy Christmas morning, shared memories with Dad at the breakfast table …

1953, my sister Midge’s last Christmas…

brucemidgesnowman1953

Midge got a dolly

Scott got a rifle

christmasdinner1953

1954… brother Dean arrived on the scene…

christmas1954

1956 in Kingston, Ontario… Nana in the foreground (I’m still in Mom, about 3 months along)

Christmas 1956

1959… I’m on the scene, 18 months old, in our house on Old Spring Road in Kensington, MD

Christmas 1959Christmas 1959

Christmas dinner 1959

Dad at the head 1959

Probably 1960… brother Dean and I show off our snowman

Christmas snowman 1960

Christmas dinner in Everett, 1966

Christmas dinner, 1966

And our last family home in University Place (Tacoma), 1969

Christmas morning 1969

Cassandra Eileen Campbell 1969

By the tree, 1969

Christmas 1971… and man, was it the 70s!

1971 - big snow year

Sandy dressed for snow

Christmas dinner 1971

1973… Dad surprised Mom with the diamond wedding ring she never had, the ring I wear today

A diamond ring for mom

Gathered round on a Christmas Day, 1985

Christmas day 1985

Maddie had so much fun hunting a Christmas tree with Nana and Papa, circa 1991

Maddie Christmas tree hunting

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Keeping Watch Through the Night, with Faith

Screen Shot 2012-12-24 at 7.38.35 AM

[Updated] I felt very dark in my faith two days ago, shaken, as I watched Dad’s discomfort while he prepares to transition from this world. And I wrote about it on this blog. But as I have said before, “Team Henry” doesn’t just support Dad. It supports me. And three of my most stalwart supporters responded with long and thoughtful emails. They meant a lot to me, so I am posting them here for the world to stumble across. I don’t think I’m at a place of peace and acceptance yet… maybe closer to Jim’s, “Well, dammit, Thy Will Be Done.”

My best and oldest friend, Ellen, the one who “saved me” with her friendship after we met by the lockers in 7th grade, sent this:

When Dad was dying, and he was in the hospital for the first time, and he was terribly paranoid, it was the first time I had ever seen my dad afraid, the first time he was not the strong one in our relationship. I was shocked that he could not access his faith to comfort him on some level. I remember trying to say the 23rd Psalm with him, pulling up the words from some deep memory: “Yea, though I walk through the shadow of death, thy rod and thy staff, they comfort me.” I didn’t see it working. Where was God?

After he died, I had a crisis of faith. What good is faith when it’s not there for you at the end? Where is God in those moments? Is there a God? I don’t know…

So, some things have become apparent to me, and maybe they are apparent to you already, but I would feel better trying to share them with you.

One realization I have had in the passing years is that the life cycle of everything includes decay of some kind. As a being nears its end of the cycle, parts of it start to fall apart, or wilt, or stop working. A plant changes how it looks. It goes to seed. It starts to turn brown. It’s leaves begin to fall off. It’s the same with people. We all wear out towards the end. It’s the way we are made.

Unfortunately, there does seem to be pain with this change. Maybe plants and trees and animals feel some pain as they change, too. Who knows? If living is about learning and growing and developing and becoming, then there is all of that in the dying process, I guess. Maybe the pain is a part of the change process helping us become whatever we must be for the transition.

I also have spoken to people and read things that have helped me to begin to have a smidge of understanding about what is going on physiologically, especially in our brains. Maybe the deterioration, or the pain, or whatever, makes it hard for us to access the prefrontal cortex, the seat of logic and reason, and where faith probably lives on some level. If so, it’s sad that we find it difficult to hold onto that which could give us strength and solace. Add in a potpourri of drugs, and it must be even harder to access faith from a logical or reasoning place.

We are all afraid of that unknown that dying is. I am afraid of the steps to dying, the pain I have watched others experience. The agitation. I am afraid of how my death will hurt those I love. Am I afraid of what happens after I die? I have friends who believe nothing happens, and then I know those who believe that if we have been good enough, we go to heaven. I don’t believe in hell.

That weekend that Mom died Lynn told me about Eben Alexander, a neurosurgeon who had a near death experience and wrote a book about it. The title is “Proof of Heaven,” and I have since read the book. I can’t say it was fabulous, or that it changed me or even answered all of my questions, but it does seem to be reassuring in the fact that there is a heaven of some kind, for all of us, that is it another dimension of our existence.

I do not want you to have to go through the process of losing your dad. I think this pain is very hard, and on the heels of losing Mom, I would not want anyone to have to go through this. I do not want you to have to carry around the sadness that I am carrying, even though we both know it will ease some as time passes and we become accustomed to carrying this weight. I know having these experiences with death, and losing those that are so much a part of us, it shapes us, adds dimension to us, affects our path forward.

I have cried out to God, too. I have had my faith rocked. I have been there. I would wish you some peace instead of angst. I would hold you, and cry out with you, and be your mother, and friend, and sister, if I could. I love you, dear one.

And my friend and mentor, Jim, offered insight and practical advice (in bullet form!), as always. (When he refers to “his” 34-year-old father, he is speaking of his role as a hospice chaplain in Kauai.) From Jim:

  • 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.
  • God doesn’t have a dossier on each of us that reads how long we will live, how we will deteriorate, whether you get cancer or I get Alzheimers. We are spiritual beings having a human experience, and that experience is governed by the natural order which is haphazard, and evolutionary, and our individual biological destiny gene defined more than most anything else. But the soul was, is, and shall be.
  • It’s perfectly natural for us to wonder how a loving God could allow this or that, but fairness as we want it to be does not come with free will and nature.
  • I have asked for most of my life, “Why did you set it up this way God?” In my dotage I have come to accept that I will get an answer…I will see and understand only when my spirit is set free from my human experience.  Meanwhile, I have to trust, have faith in God’s unconditional love, and try to be a loving other in the world. And to be perfectly comfortable in having a fit from time to time about why it is this way — why my 34 year old father of three kids is dying of brain cancer, or my lady in the Alzheimer’s unit is so very lost.  Very hard to accept that we are not in control; that we have to ultimately turn it over to the embrace of the Divine.  Meanwhile we care for each other in the fullest sense we know how, offering love and our own broken heartedness with the words of the Christ  “Thy will be Done.”  You can even go so far as to say, “Well dammit, Thy will Be Done.”
  • I am sure you understand the chaplain was asking the question so he could get a sense of where your Dad is both spiritually and religiously so he can approach your Dad accordingly.  What the chaplain’s job in this team is, is to do anything he can to help your Dad have peace of heart and peace of mind. Sometimes this is expressed in religious language; often not.  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.
  • Turn all your mixed feelings over to Divine Love.  Literally, write each one on pieces of paper; put them all into a bowl or pot.  Take a lighter and burn the scraps safely and as you do, tell the Divine to take care of this messy stuff so you can take care of your Dad and your self.  Each moment now, even the most gritty ones is precious. HUGS

And this, from my beautiful cousin, Lynn:

You are in my heart during this time of unbearable agony.  The Love you are feeling is God. Everything even the agony is part of that love. This is your path now… with your father. You are meeting it. Valiantly. You are supported. You are not alone.  

Is it possible for you to lie beside your father, maybe holding his hand, without words, and breathe together with him…  when you breathe in,  breathe in Love, when you breathe out surrender all your feelings to God/Universe, just let everything go.  Continue to breathe with your father’s breath and in that stillness you will feel God.   I love you, Lynn

[Updated] And more from beloved Jim:

Sometimes at the ICU or Emergency rooms, I encounter folks who are facing the worse — a loss that they wish were not so.  While friends and loved ones gather, no one can truly cut through the individual despairing that is happening.  Yet the presence of others is a comfort because it reminds those despairing and bracing for the worse that they are not alone completely, although the comfort does not abate the broken heart.

The same with God when we cry out for very understandable reasons, “Why are you…make it better…make it stop!”

Yet the presence of the Comforter is there deep inside whether we recognize it or not.  Not unlike what the Christ felt on the Cross when he said, “My God, My God, why has thou forsaken me” — that profound sense of broken heartedness that comes to us humans.  Yet God was there, and cut through what seemed like an ending and made it a beginning.

Turn it all over to God — see if you can make your cries personal — for me I have to talk to Christ Jesus, or the Holy Mother, or the Holy Spirit whom I equate with the female aspect of God.  I just ask them to be present with my loved one, to help them ease across that bridge over the river of life, to hold there hand in a way I no longer can, and open their inner eyes to what Steve Jobs saw at the moment of his death and exclaimed, “Oh WOW; Oh WOW”

Death will be your Dad’s final victory, Betsy.  HUGS

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Remembering Christmasses Past

christmas eve

Growing up, Christmas was about much more than the presents, decorations or food. Certainly we had all of the trappings; I remember gently hanging silver foil “icicles” over the branches of our tree, and helping Mom to place on the mantle her collection of angel figurines on a bed of “angel hair” lit from below. But at its heart, Christmas was a religious observation.

My Mom was a devout Episcopalian. We went to church and Sunday school every Sunday, and if we were sick, Mom read the week’s lessons and prayer service at home. And Christmas Eve meant attending midnight mass, which actually used to be held at midnight. When I was very young, we attended the Washington National Cathedral (I think). I drifted to strains of “Silent Night,” snuggled against Mom’s silky seal skin fur coat, surrounded by votive candles and swags of fresh greens. That distant memory of light, music, smell and touch is about as close to heaven as I can imagine.

Through the years, the scene was repeated — at St. Mark’s in Seattle, St. Patrick’s in Eastmont (near Everett) and St. Andrew’s in Tacoma.

This is a different kind of Christmas Eve. My Dad and I will be at my house, but he is not strong enough to join in the festivities at my in-laws. Much less attend Christmas Eve service. My advisor Jim reminds me, “Each moment now, even the most gritty one, is precious.”

Mom, tonight you are closer to me than ever, though you have been gone for almost 14 years. Keep the candles burning for Dad. He is trying to find you.

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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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