Monthly Archives: December 2012

December 21, 2012 · 10:10 pm

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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December 20, 2012 · 7:31 am

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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December 18, 2012 · 7:26 am

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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December 15, 2012 · 10:01 am

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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