Monday, September 27, 2010

When the patient is a child.

I can think of nothing worse than a child on hospice care. The family sitting there, day in and day out, hope gone. Feeling horrible because they cannot kiss it and make it all better. Sitting there feeling angry and sad, feeling like they cannot cope another day, another hour, another minute. Just pure agony.

We don't get too many referrals for pediatric hospice care. Most parents are reluctant to even think about it and fight to the last breath, many children dying in the hospital. I cannot blame them. I would most likely do the same.

But some MDs want the patient to be able to be managed at home. To die at home. To have their last days in a comfortable place. A place that feels safe to them.

And the parents who chose this option are so brave. So very, very brave.

I remember my first pediatric hospice patient. His name was Brian. He was 12. He was the bravest kid I had ever met. I have trouble even thinking about him, let alone writing about him. He remains in my heart always.

Kids have a way of doing that. Being special by just being.

Many kids who are not sick are very special as well. Actually, all kids are special. They just don't get to hear it as often. Many healthy siblings of sick kids are often jealous of all the attention their brother or sister are getting. They feel left out, isolated. They cannot talk about these feelings because it feels so wrong. They think, how can someone be jealous of a loved one who is sick? Something must be wrong with me to feel that way. But nothing is wrong with them. It is completely normal. We see it often. Sometimes in adults as well.

When I go to see a sick child, I also try to visit with the siblings. I bring them gifts. I give them small tasks so that they feel they are helping me with the care of their brother or sister. They want to help and feel a part of it all. As scared as they are, and they are, it helps them to cope. It makes them feel special, too. And they are special. And very brave.

I look at my own daughter. She is very healthy. I am very blessed. But I tell her all the time how special she is. Because things can change in a moment's notice.

People worry about spoiling their children. They worry that if they give them too much they will expect more and never be satisfied. But I say bunk to all of that. Make a wish wishes should not be granted only for the very ill or dying. They should be granted for the living as well.

Many people turn away or refuse to think about the unthinkable. But it happens to all types of families every single day. It humbles me to meet these wonderful families, the ones that have been through so much and still are able to laugh and smile and just simple carry on.

If they have one message it is this; love your child. Love them as much as you can and be grateful for them in your lives, even when they make you crazy. Indulge their whims. Do something unexpected for them on occasion. Hug them more. Tell them how much you love them.

And then tell them again and again and again and again.

While we try to teach our children all about life, our children teach us what life is all about.

Death leaves a heartache no one can heal, love leaves a memory no one can steal. ~~~From a headstone in Ireland

Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell. ~~~Edna St Vincent Millay

Wednesday, September 15, 2010

Let your kids play----- P.S. We are all kids at heart.

When was the last time you played? I mean, just really stopped what you were doing and took the time to play?

And when was the last time your kids played freely and joyfully?

Many kids do not even know how to play anymore. They are so used to being structured, that when they do find some free time, they are not sure what to do.

I feel as though sometimes we are pushing them to be something. But I am not sure quite what. I also feel that we push ourselves to be something. And again, I am not sure to what end.

We all want our kids to be successful; of course we do. But a life bereft of fun and games and pleasure is just not a great life.

We think we need things. Lots of things. But things provide only short term joy. However, we still try to get those things, and most of the time we work extra hard and are extra stressed to achieve just that. And what do we end up with? I am not sure I have the answer, but if I look around, I do not see people dancing in the streets full of glee over what they were able to get. I see stressed out folks who like to drink or take a pill to make themselves feel happier. Trying to forget about that stressful day. You know, the one that they have to live day in and day out so that they and their children can have more.

But more what?

I also see a lot of kids. I see them at my daughter's school, I see them when I substitute as a school nurse, I see them when I work as a camp nurse. And what I see frightens me. I see a lot of stressed out kids. If I could send home a prescription, that prescription would say, play more.

And that starts at home. Allow yourself to allow your kids to play. To goof off occasionally. To sit in their PJ's all day on a Saturday watching TV or playing the Wii or reading or sleeping or dreaming or coloring. Have a non-structured day where they can eat what they want and be what they want. It may surprise you that they will love this. They will love this a lot.

And occasionally join them. And not because it is a vacation or a holiday, but for no reason at all. Have a "just living day." Have it on a Thursday or a Monday. Surprise yourself with this gift.

We are fed a lot of stuff these days. That we have to push, push, push; and then we have to push some more. That it is a competitive world and we have got to get going if we are to ever achieve and keep up. I hear it all of the time. I have been caught up in it myself. However, it is simply a lie. And it leads to bad days, not good ones.

But a good day, a really good day, just is. And we do not have enough of them. Our kids do not have enough of them. We are a nation bereft of joy.

So, tonight, let you kids have some fun. Let them play. Yes, even on a Wednesday. Have some fun with them. Have a day when you just eat junk food or tell funny stories or act silly. Don't do errands or laundry or chores. Just be.

I am telling you, play is the best thing for what ails you. It will make us happier people. And after a day like today, I will tell you, it is the most important thing we can ever do.

“You can discover more about a person in an hour of play than in a year of conversation.”

“I still get wildly enthusiastic about little things... I play with leaves. I skip down the street and run against the wind.”
~~~Leo F. Buscaglia

"The prime purpose of being four is to enjoy being four - of secondary importance is to prepare for being five."
~Jim Trelease

It is easier to build strong children than to repair broken men.
~Frederick Douglass

"Children find everything in nothing; men find nothing in everything."
~Giacomo Leopardi

Sunday, September 12, 2010

Filling up time.

"I don't have any time today."

"I will get to it when I have more time."

"I always thought there would be more time."

I hear a lot of talk about time. Not just when I work with folks that have truly run out of time, but everyday folks in my everyday life. It seems to me that no one feels that they really have enough. We are a nation bereft of time.

I know that we certainly have a lot more time saving gadgets now. More than our mother, father, grandparents and great-grandparents ever had. But it seems as though even with these things we run faster than ever and still never have any extra time to spare.

So what gives?

I read a quote yesterday that stated this:

"People talk about the reality of their life as if it is important. And we want you to understand, it's only the temporary indicator. If your gas gauge is on empty, do you go to the gas station and look at your gas gauge in horror? "How did this happen? Why, why, why did this happen to me?" Do you lay your head on the steering wheel and just sob? "Oh, look what it's come to. I'm finished. I've lived all of this life, and look where I am." Or do you just fill up?"
- Esther Abraham-Hicks

I liked this quote, because most of us feel depleted much of the time. We feel we waste our time on meaningless nonsense. We feel that time is slipping by fast and that we have no control. We feel our life is too busy, but still so empty in so many ways. We feel overwhelmed. Rushed. Exhausted.

But do we ever stop and think about time? Not how much we do or don't have left, because we will never know that, but how we actually spend the time we do have now.

I hear people say things like, "that is a waste of time." or "God, I wasted the whole day and got nothing done." Is it really a waste if you are enjoying yourself? And what is time for anyway? I am sure it is not there to simply use up on meaningless tasks, is it? I hope not. But I don't know for sure.

One thing I do know for sure, however, is that time truly does end. And I can share with you a bit about the end of time. I am familiar with that as I work frequently with the few that are actually there. Time is over. The cancer has spread. They can no longer get out of bed. They await death.

And what do they think about? They think about life. Their life. The time they spent living. Some curse that time. They may have spent way too much of it at a job they hated. They regret not spending more time with family and friends. They regret not seeing Europe. They regret not spending more time on the garden. They wish they had gone to the beach more. They regretted not wasting more time on things that brought them joy.

A patient recently asked me this, "How much time do you spend on joy? You see so much death, you must not want to waste a single day on things that do not bring you joy."

I thought about this. I do spend a lot of time on things that do not bring me joy. Like doing laundry or dishes, or grocery shopping. But those are the everyday tasks that must be done, and I know she wasn't talking about that.

What she was alluding to was this, do we take the time to stop and do things that bring us joy, that fill us up in a meaningful way. Do we make the time to go to that concert we read about, to go to the beach on a beautiful day, to go outside and ride bikes with our kids, to take that art class. Do we stop when we see something that piques our interest, or do we drive by hoping to get back when we have more time?

Or are we using our time to do the things we think we should be doing even though we dread them. Things like spending time with people we don't particularly like, or exercising because we worry about being too fat, or cleaning our homes and pulling weeds and fussing over things that really have no meaning what so ever but that we feel we must do for some odd reason. The fact is we waste a lot of time doing things that do not add value or joy to our lives. And for what gain?

The people I meet at the end of life are not always sad. Some have lived very long and fulfilled lives. They talk to me about their garden, how they went to the beach each summer, how they loved to paint. These people are not all retirees or empty nesters. Yesterday, I admitted a beautiful lady who was only 43. But she talked about her passions and she is still fulfilling those passions, even though she knows that death is a certainty.

"I am not giving up on my life. I will continue to do with it what I want and can until the very last breath is taken from me. And it will have to be taken from me. I choose to fill my life with what I want. I do not choose to leave this life empty."

And so there it is. We can fill our own lives. We can. We just have to choose to take the time to do it. Even as time runs out.

Time goes, you say? Ah no!
Alas, Time stays, we go.
~Henry Austin Dobson

Time is the coin of your life. It is the only coin you have, and only you can determine how it will be spent. Be careful lest you let other people spend it for you. ~Carl Sandburg

Time is a great teacher, but unfortunately it kills all its pupils. ~Louis Hector Berlioz

Wednesday, September 1, 2010

Do good intentions count? Do actions really speak louder than words?

"I really meant to call."

I was meaning to call, but got so busy."

I wanted to stop by, really, I did. But my kids are sick and I thought I would make her sick."

"I didn't know what to say."

These are all excuses I hear from well-meaning friends and relatives who call us to get information about a patient's medical status. I have probably used the same excuses myself.

We all get busy. We all mean to call or to write or to stop by or to buy that card. Many times we have very good intentions, we just don't always follow-up on them. And then time gets in the way and moves us too far forward and we think it is too late to go back now and call or write or whatever.

But it isn't. It is really never too late.

"I haven't heard from her in years," said a patient recently when I told her about a phone call we received from an old friend. "Why is she calling now I wonder?"

We didn't wonder. This was a woman who was well liked by many and we had received many calls. But we are not allowed to give any information to non-family members, so we always refer the questions to the patient or their family members or caregiver.

Her friend had said she knew about the patent's illness from others. They had been best friends in high school, but had lost touch since graduating some 40 odd years ago. They often kept in touch only by the occasional reunion or Christmas card.

"But I never forgot her," her friend said to me. "Life has a way of getting in the way of things that matter to us, keeping us apart. But I have loved her since the 9th grade. She was part of me. Will always be part of me. I never told her that. It seemed like my life going forward with my husband, my kids and my career became me. And that is true to some extent. But that alone did not shape me. You never forget the ones that helped to shape your life. And when they are going to be gone forever, it leaves a huge whole. Bigger than I ever could have imagined. I should have called or visited. I should have written a note. Is it too late now?"

The patient was on home hospice care, pretty much bed-ridden at this point in time. But she was still alert, still taking visitors, still answering the phone. Still alive.

"It is never too late for the living," I told the friend.

"But what if she is mad at me for being quiet all of this time. I really had good intentions. I did. Should I tell her that? Do good intentions count?"

I said I wasn't sure. Perhaps they could count if they are known. But once someone is gone, good intentions provide little comfort.

So she called. They lived 400 miles apart, so a face to face visit was probably not going to happen, but they talked each day for a few minutes and exchanged cards and pictures and their lives met up again.

"I often wondered about Jane," my patient said, her eyes smiling as she talked about her. "I could have called her too, you know. It is not just her fault. She told me about all of her intentions. I told her about all of mine. I am not sure what kept us from doing the things we wanted to do, but that is just water under the bridge now. Swept away. Her good intentions were voiced to me and mine to her and that is good enough. I never really paused enough to reflect on how much the people in my past younger life meant to me. We focus so much on the current, but the past is part of us as well. She will always be a part of me and I of her. Isn't that amazing. Isn't life a grand journey."

This patient died recently, but it made me stop to think about all the good intentions I have had over the years that I never got around to sharing. And I wondered if it was too late as well. But Clara, my patient, taught me something. That good intentions really do count.

That words can be just as powerful as actions.

As long as they are spoken and can be heard and shared.

In the End, we will remember not the words of our enemies, but the silence of our friends.
~~Martin Luther King, Jr