Thursday, June 26, 2008

Hospice Spouse Redux - circa 2006

Hospice Spouse Redux
Hi. I’m that hospice spouse guy. Remember me? I’ve met many of you at conferences and you chortle and say, “Oh, you are the hospice spouse.” We have your article on the refrigerator. So, you probably won’t put this on your refrigerator. My sweetheart of 42 years died a few weeks ago. After a very hard struggle with two types of metastatic cancer, Sarah died peacefully with me and our daughters Laura and Suzanne.
I learned a lot of good things from Sarah, but I learned most this last year. Sarah knew where this would end and so did I. When Sarah retired because of her illness, I quit my job. I decided to start spending some of our retirement savings. We were together constantly for the last 12 months.

For me, this was the best year of my life. Sarah and I were best friends and I knew our moments were very precious. Except for my daily long walk, we were together. Sarah didn’t have the strength to go with me. At first I didn’t want to go, but she told me that I was doing it for her and that got me out the door.

We learned or I should say we practiced at staying in the moment as best we could. We learned to try to avoid the recitation of illness. “When did that happen?” “Why didn’t they know this or that?” “What about that missing sponge?”

Whenever we would go into the past, where both good and bad lived, we often found that our minds drifted into dark places. So, we would jerk one another back to the moment. Sometimes we would think ahead into the future and find scary places. Again, one of us would tug the other back to the fact that we were together, safe, in a nice little condo with music and pictures and a park outside and we could snuggle. We had many blessings.

Another technique we used was a metaphor. It was “The Well.”
The well is an old stone structure covered with moss. In fact, there was green moss all around the outside and all the way down into the dark bottom. The floor of the well was covered with thick moss. It was slippery. If you got close to the well, you could slip down inside. In a short time you --yourself would be covered with moss. You would become a mossback creature.

So, we would laugh and say, “Don’t become a mossback!!”
If you think that is weird, well that is fine. We thought it was funny and laughter helped jerk us back.

Sarah had a special ability to see the good in every day. That insight was not my specialty. I had always thought of my job as keeping an eye out for the wolf. After being alert yet finding no wolves for many years, I tried to learn Sarah’s sunnier approach. As Sarah became more ill, the clouds were more frequent but we managed to find some sunny spots in every day. And… we didn’t fall in the well.

Confessions of Hospice Spouse - circa 2000

I am a hospice spouse. It sounds like some type of small mammal, doesn't it? But, in fact, I am a large mammal. My wife is a hospice director.

• • •

I have a theory that our house is filled with friendly ghosts. Over the years, my wife has met so many people who are now dead that I figure some of them hang around and visit us. I don't know if they protect us, but it is possible. Despite my protests, my wife continues to visit public housing projects in rough neighborhoods, at night, alone. Something is protecting her . God? Casper? Both?

• ••

Like the doctor's spouse, I have learned a lot about can¬cer- it's bad, folks; death-not so scary; dying-it should not be bad, but it can be; pain-avoidable; durable power of attorney-we have one.

• ••

I know many, many hospice stories, but I never tell them. Not only because of confidentiality, which I respect, but also because none of my friends wants to hear them. I used to tell people that my wife was in hospice, but I got the message that, young or old, everyone thinks hospice is great-as a concept. They don't want the icky stuff; they don't want to hear anything that suggests we are all going to croak.

• ••

I am in the computer field, so there is often a computer or two in the back seat of our car. One day, I pulled into the parking lot outside the hospice where my wife worked. I just wanted to say hi to her. But snow covered the lot, so I parked illegally. I hurried off, without locking up. As I got inside the door, I met my wife. "I have to hurry," I said. "I left a terminal in the car." Every head in the place snapped up.

• ••

On another occasion, I was working on a database with some hospice folks to help them keep some program statistics. Naively, I asked: "What types of outcomes should we code for patients?" A kindly nurse explained that all would be dead, "except for the miracles," that is.
"Oh," I said .

• • •

Live today, my wife says, and she has many, many stories to support her philosophy. Mostly, they are about people who waited all their lives to have fun, but get cancer instead. My wife does have a point. I try to stop to smell the flowers, but mostly I forget and rush on.

• • •

Families who have a member working in hospice know well a cycle of anger and guilt which should have some type of German name like the Grendl-Angst Syndrome. Usually, it occurs when you're really hungry-dying, even-but you have to wait for dinner because your dear one has been delayed by duty. First, you are annoyed that the hospice creature is late. How can she do this to me! We agreed that there is a time for work, and a time for dinner! Outrage! Growl! Then, Phase Two of the cycle kicks in. The creature arrives, full of explanations. These are among the best:

Just as I was leaving, the patient died, and the family needed to talk."
"I was on my way out. Really. But the son who had flown fifty-three hours from Siam wanted to talk to me. What could I say?"
"Everyone was crying. What could I do?"
"I tried to reach Doctor FritzI all day, and he suddenly was in my door wanting to talk." .
And, my all-time favorite: "The patient needed to talk."

I worry that it is probably pretty selfish of me to full prey to the cycle, but then I think of something else. I believe there are things like Virtue Points, a system based on good deeds and administered, perhaps, by St.Peter. Like those airline mileage certificates, they can be transferred among relatives. I explain to friends that Sarah, my wife, has amassed enough Virtue Points to meet the needs of all of our family.
Even me. -


When I moved to Santa Barbara, it was against my better judgement. My wife, Sarah, was very ill with colon cancer. She wanted to be closer to our daughter, Laura. We have two daughters, Suzanne and Laura. But Laura is in Chicago. Chicago? Santa Barbara? Sarah picked Santa Barbara. Plus, we had lived here before in the 1970's.

I had various conditions: 1) we wouldn't move if Sarah was very, very ill. 2) We wouldn't pay a ridiculous amount of money for a tiny condo. -- Oh well. We did move here while Sarah was very ill and we did buy a tiny condo for a lot of money. It was cheap by Santa Barbara standards but... you know. Everything is expensive in Lotus Land.

I stopped working for a year. That was an excellent decision. I was able to stay focused totally on Sarah and we made the best of the hard situation. Sarah was one of those people who fights right until the end. She did indeed fight very hard. She went through all the surgeries and chemotherapy that could possibly help. At the end, we were waiting for a clinical trial.

Mercifully, one day, she awoke very confused. I knew it had gone to her brain and I was right. In about 4 days she died. She was spared a long period without her brain working. I'm thankful for that. She would have hated that.

While she was alive, we did pretty well that last year. I bought a huge digital frame and spent a lot of time building a big inventory of family pictures. We set it to random display and watched it. We actually would just sit and watch the show that was our life (42 years of marriage & family). You mostly take pictures of happy memories, so that was a great medicine for both of us.

I also loaded our 500 CD's into the computer. So, we were listening to the music we loved and watching some great scenes. Those was really some joyful moments.

Since I wasn't working for the first time in my life, I was worried about being bored. But the fact is, that being a caregiver is pretty intense. I did a lot of Jr. Nursing stuff. I learned how to clean wounds and give injections. At one point, we escaped from the hospital and stayed at a Marriott while the home health folks helped me with infusions of antibiotics. We made the best of it and the hotel definitely beat any hospital.

But I digress. My point here is that I was not bored. My job as caregiver took a lot of energy and time. I learned to walk every day since part of the plan was that I not get sick, at least until Sarah died.

As to the dieing thing, we did not talk about that. Sarah needed to keep her head in a living place and she didn't want to contemplate her death. I knew her wishes for funeral (no) / celebration (yes). But, in general, she didn't want to talk about "it." This is similar to the situation that I recently read about with Susan Sonntag. Her son wrote about her demand that he pretend she was going to survive. It sounded very, very familiar. It is very hard on the person who is going to have to stay behind when you refuse to consider your own mortality. But then again, who am I to decide such things. Like Sonntag's son, I deferred to her wishes.

Our New Green Car

q Our New Green Car


It seems we have a new green car. You know, when you buy a green car the world seems suddenly to be filled with little green cars. They are at every stop light. They whizz by constantly. “My God!”, we say. “Where did they all come from…”

As it turns out Sarah has now finished the surgery, radiation, chemotherapy experience. The treatment of her uterine cancer is over. Recently she confided that the worst part of the experience was when the treatment ended. After over 100 trips to the cancer center; after getting “nuked” at the by the radiologists, “medicated” by the chemotherapists, and many injections to build up a depleted immune system, it was all over. We walked out and got in our car and drove home.

Now what? We wait and hope and pray there is no recurrence. Apparently, forever….

Before the cancer diagnosis, we hadn’t really worried about it. We had the occasional brief scare. A benign lump for Sarah, some unwelcome blood for me, but all the tests came out fine. We were healthy. We neither worried about cancer , lightening, or oncoming cars. We were ok.

I think about it now. At some controlled level, it is always there. I met one of Sarah’s several doctors in the waiting room of the cancer center. I told him that I felt we now had an unwelcome house guest. He replied, “He’ll never leave.” The unspoken message was, of course, “Get used to it.”

As soon as the diagnosis was announced, we began to see the green cars everywhere. It seemed that persons who had survived or were being treated for cancer surrounded us. Many were good and stories that helped and encouraged us. Very few were depressing or stories of despair. We already knew the sadder outcome stories. Sarah has been a Hospice professional for over 20 years. We already knew the bad stuff.

As the time has passed, Sarah and I have begun to hear the recurrence stories. They were always there. But, honestly, we must not have noticed the little flashes of green as they zipped buy us. Yesterday, while killing time (a phrase Sarah hates) I was in Dallas at the Galleria. I went to see the movie, “Stepmom”. Guess what? Recurrence. Picked-up the paper, the King of Jordan is back at the Mayo Clinic. Recurrence.

Along with the guy in our back bedroom, we need to adjust to our new heightened awareness of the recurrence thing. Considering all we have learned in the past 8 months, I think this will be easy. But really, if you hear about a recurrence, don’t feel a need to call us. We’ll be fine without it. We are buying a blue car.

Poem 2

AApril 30, 2002“

How are you”


He really doesn’t want to know.

I don’t want to tell the story.

I want to tell the story.

I must not tell the story.

Poem 1

The Hall
Why do I come here in my thoughts.?
I see it clearly.
It is long and straight but it has many turns.
The walls have pictures of body parts.
It has a big liver picture at which I stare.
I look at it many times and study it.
I bring friends to see it to help them understand.
The wall has a letter from a man.
I am afraid of the letter.
I do not read it.
The title says: “from a man who has had many surgeries.”
I never read it.
I think of the letter often.
I think of the hallway often.
I can see it’s never ending light.
The nurses and aids moving quickly
The machines being hauled up and down
The tight little knots of doctors planning for a moment in the room.
I walk the halls to escape the room.
I learn to sit quietly for long periods of time.
I look through the windows at the flowers and the rain.
I learn to stop my bad thoughts.
I do not learn to have good thoughts.
No one talks to me.
Not in the hall.
Not in the cafeteria.
Not in the entire hospital.
I am invisible.
The elevator is filled with us all.
The professors and the interns
The nurses and the students
The patients and their spouses
The mommies and their babies
Late at night we family-people talk.
We are tired and we let our guard down.
We tell our tiny stories as we descend 12 floors.
I listen to the tragedy and feel nothing.
We know we can stop when the doors open.
We return to our invisible state.