Category Archives: Uncategorized

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?

5 Comments

Filed under Faith journey, Uncategorized

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.

Leave a comment

Filed under Uncategorized

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.

3 Comments

Filed under Uncategorized

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.

8 Comments

Filed under Uncategorized

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.

4 Comments

Filed under Uncategorized

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.

1 Comment

Filed under Uncategorized

Summoning Angels

Perhaps the worst losses are the ones that we don’t expect: the children who die before their parents, the young mothers or fathers whose lives laid ahead of them, the mothers we expected to be in our lives for so much longer.

With these premature deaths, we wail with no less intensity than the mourners of ancient Rome, albeit through all the ways that we communicate now. Whether poured out in text messages, or emails, on Facebook or by telephone, it is awful to behold, and worse to feel.

With the loss of my “other mother” in October, I find myself compelled to unpack some Christmas decorations that I haven’t displayed in years: my mother’s angels. Back in the 50s and 60s, my mother collected small angel figurines that she displayed on a bed of “angel hair” (spun fiberglass) that glowed from the string of tiny white lights beneath. Each was lovely, but one in particular stood out: a small girl angel, clad in pink, rosy cheeked, curly haired, head bowed, hands clasped in prayer.

Angels weren’t just a symbol of Christ’s birth to my mother; she had her own little angel in heaven. Before I was born, my sister, Midge, died of leukemia at the age of four. I don’t remember seeing obvious signs of grief in my mother or father during my childhood. But much later, after my mother died in 1999, Dad poured out his heart to me. He repeatedly slapped his palm against his forehead as he described her calling out to him from her oxygen tent in the hospital, “Daddy, help me.” “I couldn’t do anything,” he said, “I went out of the room and pounded on the wall. I couldn’t do anything.”

In the past few weeks, I have borne witness to and experienced that stabbing kind of pain that comes with unexpected loss: the continuing fallout from the death of a young mother to alcoholism, the sudden loss of a joyous and loving young father, and my “other mother,” Miss Ann.

My other mother’s family gathered to make her favorite foods and set the table just as she would have, harvest colored candles arrayed on her heavy brass serving tray. My friend who lost her childhood buddy to addiction wrote a eulogy filled with beautiful stories of her wit and strength. My friend who lost her brother, the young father, raises beers to him to re-enact the fun times when they met at the Whole Foods Bier Garten. These moments were nothing like scenes from a TV drama in which survivors look beautiful while they delicately weep in their time of grief; they were – and are – red-eyed, snot-riddled affairs where people try to do something, anything, to make a terrible reality less terrible.

In reliving traditions – even privately – we summon the people we have lost, the people we feel we should not have lost. Are we hoping that their ghosts will be with us as we go through our rituals? Do we imagine that they will be near as angels, hovering over our lives? I think my mother imagined Midge as an angel, captured in the likeness of the little pink-clad figurine.

Caroline Kennedy, who knows a few things about grief, devoted a chapter to death and grief in her lovely collection of poetry, She Walks in Beauty (Hyperion, 2011). Among the poems was this excerpt from “To W.P.,” by George Santayana:

With you a part of me hath passed away;

For in the peopled forest of my mind

A tree made leafless by this wintry wind

Shall never don again its green array.

Chapel and fireside, country road and bay,

Have something of their friendliness resigned;

Another, if I would, I could not find,

And I am grown much older in a day.

But yet I treasure in my memory

Your gift of charity, and young heart’s ease,

And the dear honor of your amity;

For these once mine, my life is rich with these.

And I scarce know which part may greater be —

What I keep of you, or you rob from me.

Those who lose someone too soon know what it means to grow older in a day, and to feel robbed by the loss of someone who died before we were ready. As I pull out my mother’s angels, one by one, I call her: “Mom – whether you are angel or ghost – be with me.”

1 Comment

Filed under Faith journey, Uncategorized

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.

1 Comment

Filed under Uncategorized

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.

2 Comments

Filed under Uncategorized

Saints behind me, saints before me

I’ve just come off one of the more emotional weeks in recent years, a trifecta of challenges. A big part of it, as I wrote last week, was being in my hometown during the sudden decline and passing of my “other mother,” dear Ann Palmer of Tacoma, WA.

As sad as I am about her death, I feel inspired by how she lived, and so very grateful that she was a part of my life. Today was All Saints’ Sunday, and I attended services at my home church, St. Andrew’s Episcopal, which Ann and her family began attending in 1964 and my family began attending after we moved to Tacoma in 1969.

Fr. Martin Yabroff invited the small (but energetic) congregation to imagine that we are all runners rounding the track in an Olympic sized stadium filled with cheering saints. In the Episcopal tradition, these saints aren’t just the martyrs and miracle workers we hear about; rather, they are the people in our lives who inspire us and cheer us on. “We are not alone,” Fr. Martin said. Our stadiums are filled with people who have inspired us.

I know my Mom is in that stand, and someday, perhaps not so long from now, my Dad will be there, too. Ann and her husband, Terry, who passed away in 1998, is also there. “Others have been through terrible times,” Fr. Martin continued. “God wipes away tears. We shall persevere just as they did before.”

1 Comment

Filed under Faith journey, Uncategorized