Sunday, May 27, 2012

Remembering....I know you by heart

This weekend, I am reminded of so many of my patients. Now that I have stepped back from my life in Boston, in our new home over two thousand miles away, I seem to be able to better reflect upon the years I spent as a hospice nurse. Many of the patients I cared for suddenly have been coming back to me in my memory. I cannot list their names due to confidentiality issues, but I remember them all. So many beautiful, lovely people. Many way too young. Many older as well, but who still had so much to give.

One woman in particular, I will call her E, died on my birthday. I will never, ever forget her And not just because she died on my birthday. She was simply remarkable. She was remarkable for her strength and her unrelenting courage.  I remember going to her home the day she died. She asked me what day it was. "March 20th," I answered. She said to me, "Is it spring?  I want to make it to spring." Yes, I told her. It was indeed the first day of spring.  She died peacefully several hours later. I remember leaving and going to my car and being just so angry. So damn angry that all of these people had to go way before their time. Not just E, but so many others as well.  It just seemed so unfair to me.  This loss.  This tremendous loss.

I had one patient, a firefighter, whom I just adored. He had renal cancer, but at one point, he rallied.  He seemed to be getting better. It was like a miracle. I visited that home twice a week, for almost a year. Then he declined.  I remember calling his MD, frantic. The MD was quite amazed he had lived this long and was not surprised.  He asked me what I had been doing, as clearly he saw no other explanation for this patient outliving his grim two month prognosis.  I think the MD thought I was nuts.  The guy was on hospice, for goodness sakes. I just didn't want him to die. He was living his life with his wife and grown sons and grandchildren and he was just a great guy. And just that past week they had  had a huge birthday party for him. But he died one night after waking up feeling like he couldn't breath.  The night nurse was there with him. I wish I could have been there. I miss him. I do.  And I hoped against hope that he would somehow pull through and have more time. But he was robbed, just like so many others.

I miss so many of the  people that I took care of. When you enter someone's life at the end of their life, all the nonsense strips away and you are left with just a real person. You know them quickly. They know and learn to trust you as well.  They let you see them in what is a very intimate, raw time. There is a connection no matter how briefly you attend to them.

Some nurses do not get the connection.  Everyone is different. But I felt a connection almost, I would say, 100% of the time. It is true. I cannot explain it. But I felt it.

One patient I fondly remember was a chef. She had a cooking show on cable TV.  I met her on only one weekend, but I will never, ever forget her. She was the matriarch of the family. Her husband and two adult sons were clueless on how to care for her.  You could tell that she always did everything for them.

 I went to her home to admit her to hospice on a Saturday morning and she asked me to not leave her alone with them. "They don't know what to do.  I am scared."  So I spent most of the day with her, going to see other patients, but then returning. She was a lovely woman.  She had been battling cancer for some time, but now it was everywhere. Her last MRI showed it around her heart, and so her MD told her to prepare and to sign onto hospice.

I remember sitting in her elegant bedroom. She had made it a haven. I sat in a beautiful chair next to her bed and we talked. Mostly about cooking and she told me a story about how she once met Julia Child. Her son came upstairs and laid on the bed next to her and fell asleep as we chatted. It was a cool autumn day, the perfect day to hang out and nap. It would have seemed like an ordinary day.  Except of course it wasn't.

I went back the next morning early.  She was declining quickly.  I stayed most of the day.  She knew she was dying and asked me to hold her hand. I gave her medication to ease the anxiety and she was able to sleep.  I stayed.  She died that afternoon. The sons and husband did not have a clue what to do. So I told them to sit on the bed with her and tell stories, which they did.  They told many stories about fun times.  She seemed so peaceful lying there, listening. Then her breathing changed, and she passed away quietly. Elegantly. Just like she lived.

I could go on and on with so many stories. I may tell more on another day. The memories seem to want to come out now. They are all truly etched in my heart.

I will never forget them. And I miss them all.

The worst part of holding the memories is not the pain. It's the loneliness of it. Memories need to be shared.”

~~~ Lois Lowry, The Giver

Saturday, May 26, 2012

I Guess That's Why They Call It The Blues

“I did not know how to reach him, how to catch up with him... The land of tears is so mysterious.”

~~~~Antoine de Saint-Exupéry, The Little Prince

We are not allowed to be sad anymore. Sadness is now equated to depression which is equated to a medical condition that somehow must be treated.  Usually with medication.

It used to be okay to be sad. To feel bad about losing something or someone. It was once okay to sit and cry and be alone.  Most of us got over it by doing this. Sometimes it lasted for days, this overwhelming sadness.  But we leaned into our grief and found that it was not so empty, it lifted us back up and we went on.

Not so much anymore. You are not allowed to cry anymore. No one wants to see it, hear it or be around it.  It is like we are somehow supposed to be happy 24/7, and if we are not happy, then at least we should be content.

The problem with that is no one is always happy. And it is a strain to have to pretend. And that strain leads to more sadness, and it goes on and on.

Some people are really truly, clinically depressed.  They may have a chemical imbalance that leads them to medical treatment and psychotherapy.  They get much needed help and many get better.  Some continue to be depressed, but it becomes more manageable.

But the majority of people are not depressed.  They are situationally sad, have the blues, feel "out of sorts."  Medicine may not help these people. They may be sad because a relationship broke up, or someone they loved has died. They may be sad because they are not finding anything that makes them happy, be it a job, a hobby or a friend. Or, they may just be sad for no particular reason that they can place their finger on.

But these people are not depressed.  I am tired of hearing people, who are clearly not depressed, telling me how depressed they are.

"I am so depressed. They just took my favorite show off the air." Really?  Depressed?  How about disappointed or maybe even sad. But not depressed.

We bandy the word depressed around too much.  I think we need to change that.  Too many people are starting to believe they are truly depressed when they are not.  Many, in fact, are taking medication for a problem that does not exist for them. Antidepressants are the number one prescribed medication in this country. And we are not talking about adults only here.  Many children have been misdiagnosed and now have a label of depression attached to them.  That in itself is sad.

Why is it no one is allowed to be sad anymore? When we see someone sad, why do we automatically try to cheer them up?  Why can't we just be present with the sadness? What is it that makes us so uncomfortable around it.

After my mom died and I was standing at her grave after the funeral service and crying, a friend walked up to me and said, "Are you okay?"  I turned to look at her, tears streaming down my face and she looked bewildered.  She said to me, "I guess you are not okay."  Then she didn't know quite what to do, so she said, "Lets find something to cheer you up."  Cheer me up? My mother just died. Why was it not okay for me to be sad?

I think this is what is making people more stressed out, and, interestingly, more sad; this incessant need for us to always show a happy face. It is virtually impossible to be happy all of the time.  It is not natural. It is a curse and and a strain.  We need our sad time.  Our blues. Our melancholy. They are part of who we are. It is okay to stay home and cry once in awhile. Life is hard. We must allow ourselves the ability to own that and weep. Embracing our sadness can be empowering and beneficial to our health. There should be no stigma attached to occasionally having the blues.

Don't wish it away

Don't look at it like it's forever
Between you and me
I could honestly say
That things can only get better

And while I'm away
Dust out the demons inside
And it won't be long
Before you and me run
To the place in our hearts
Where we hide

And I guess that's why
They call it the blues........

“We enjoy warmth because we have been cold. We appreciate light because we have been in darkness.
By the same token, we can experience joy because we have known sadness.”
~~~David Weatherford

“People are afraid of themselves, of their own reality; their feelings most of all. People talk about how great love is, but that’s bullshit. Love hurts. Feelings are disturbing. People are taught that pain is evil and dangerous. How can they deal with love if they’re afraid to feel? Pain is meant to wake us up. People try to hide their pain. But they’re wrong. Pain is something to carry, like a radio. You feel your strength in the experience of pain. It’s all in how you carry it. That’s what matters. Pain is a feeling. Your feelings are a part of you. Your own reality. If you feel ashamed of them, and hide them, you’re letting society destroy your reality. You should stand up for your right to feel your pain.”
~~~Jim Morrison

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!”
~~~Hunter S. Thompson

Sunday, May 6, 2012

What death has taught me about change

Change.  Sometimes change is for the good.  Sometimes not. Some say that everything changes. Some say, things always seem the same. I guess it is all the way you view it, or at least, want to view it.

Lately, I have experienced a lot of change. Moving from the Boston area to Utah. Letting go of my hospice job that I loved for seven years. Leaving my daughter's school, her friends and the comfort of knowing everyone at her small school for the past 7 years. Leaving friends, certain favorite places that were once part of who I am.  Leaving my brother and his family who lived only 30 minutes away.  Letting go of my backyard flock of chickens (harder than I thought).

Change always brings loss. Even good changes. But loss is inevitable in life. Many try hard to avoid loss; they become rigid and try to control everything because loss is too overwhelming. But loss finds them anyway. No one can escape it.

Death brings the ultimate loss.  I have witnessed it over and over again. The loss of a lifetime of memories to come.  The loss of companionship. The loss of the familiar sounds and smells that we all know. It brings the loss of tradition, hard as we try to maintain it.  It means the loss of ourselves in so many ways.

So, smaller losses, to me, are not all that meaningful.  Sure, leaving a home and a place you love is not a small loss, and indeed it can be quite overwhelming. But you take your life with you and create new memories and maybe even grow a bit. Smaller losses should be seen and felt and comforted for sure.  But they are not the end. Not like death. And that is what I have learned.

Death is it. It is the game changer, the end game. We can pretend it won't affect us, but it will.  It does not discriminate, so you may lead a healthy, good and clean life and death will get you anyway.  It is unfair.  It is cruel. But accepting that you are going to one day die frees you in a way that allows you to really, finally live.  When you accept that this is it, this is really all there is, and that what you see is what you get, then life's little or big changes can be tolerated with less of an impact.

I wanted to curl up in a ball in my bed when I realized we had to move. It was so overwhelming. Selling two houses, moving away from family and friends, yanking my daughter out of her best year in 7th grade when she was an honor student and happy, letting go of my dream of living in New Hampshire or Vermont one day. And especially giving up my job.

But once death said to me, 'this is nothing,' I knew that I was being silly.   Death will tell you things if you only listen.  It tells you to go on, live while you can. Experience it all; the good and the bad.  Learn to comfort yourself and do not look to others, for you will die alone, be prepared. I know this sounds like doom and gloom, but actually, if you think about it, it is life affirming. So, comfort yourself, cry a bit, but carry on. That is what death says to us. It is just that we don't listen.

So, knowing death has made my move easier. It has buffered me against the overwhelming urge to feel sorry for myself.   It allows me to move on and meet new people and move forward, even if the steps feel small at first. It says to me, it is okay to be unhappy, but you are certainly wasting time with all of that.  And that is true.

And so I stopped.  And I have decided to be happy. And it worked. And I am.

Life is better than death, I believe, if only because it is less boring, and because it has fresh peaches in it.  ~Alice Walker

Millions long for immortality who do not know what to do with themselves on a rainy Sunday afternoon. ~Susan Ertz, Anger in the Sky

Watching a peaceful death of a human being reminds us of a falling star; one of a million lights in a vast sky that flares up for a brief moment only to disappear into the endless night forever.
~Elisabeth Kübler-Ross