the big finish

the big finish

Thursday, February 4, 2016

End of life...

Today, in Colorado, the house of representatives is debating an assisted suicide bill.  The talking heads on the radio have been going back and forth about the pros and cons and who has the right to make the decision....etc., etc.

I find this so interesting, of course, because I am in the thick of end of life and what is perceived as suffering and what is suffering.  In nursing school, some 31 years ago, we were taught that pain is whatever the patient says it is.  I believe that suffering is the same way.  Suffering is whatever threshold the person says it is...

I have had the honor of caring for folks in all different settings that are at end of life.  Some people begin suffering when the diagnosis is presented to them because the thought of leaving the earth or having a diagnosis without a cure makes them suffer.  Are they in physical pain?  Sometimes they are not but the mental anguish of what is to come is enough to feel like they are suffering.

The question it my place in the medical profession to make sure they are really suffering and they really want to die so then they can get the medication they need to end their life?  I guess I don't want that kind of power.  I know that many folks that I begin end of life care with are done...tired and ready to move into another realm.  But, do they want to do it themselves?  Do they want to pick the date and time?  I don't run across many of those folks.  

I do feel that when families are getting the fatigue that comes with caring for a patient that is dying, they would like the choice but I also think that many of them would not take that option should it be offered.

My hospice patients are courageous and well informed.  They are ready to end the treatment and deal with whatever comes their way.  A lot of them want finish strong and make sure that the ones they love know that they are proud and are going to be fine without them.  They spend time working through life stories and laugh and cry at the next steps.  With many families, the end of life just makes the glue that holds them together unbreakable.  They got through the death of a loved one and the cement of the experience is a painful yet empowering experience.  

Still, I have some folks that ask the questions...the ones that begin with, "they don't make animals suffer like this, why do they make humans?"  I don't have an answer but that question opens a dialogue that helps me understand what the person really wants at end of life and gives me clues to help them get there.  Interestingly, if I could say, "well, we can get you a lethal dose of "X" if you want", I am not so sure so many of my patients would take me up on it.  But, I can totally understand wanting it if that is what they want.

So, my personal thoughts are in a jumble about this.  I think about myself and if I was suffering and would I want that option?  I always say I would...but would I take it?  I cannot say for sure.

I do know that there is some profound healing and learning about the deep love of families that happens around caring for a dying person.  But, sometimes, it is the most difficult and hurtful times for families that were fractured before the person became ill and that time is filled with fights and yelling and deep anger.  Thankfully, I don't see that too much but I would be lying if I didn't say it happens.  So in those situations, if the dying person could take a lethal dose of something...would that make the fracture of the family and deep anger go away?  I don't know...

Illness, terminal diagnosis and end of life times are the most difficult things a human can go through.  To know that the end is near when you would rather stay is daunting.  Some people can look at all of it as a part of life and live day to day while others cannot get to that peaceful place.  I can understand both and hope that if and when the bill gets passed, it is clear and gives the power to the that the wishes can be honored and understood clearly...and it is not up to anyone else.

Food for thought...
We'll tawk tomorrow,
I love you all,

Friday, December 25, 2015

The true meaning...

Christmas eve is always an interesting time at our house.  We eat soup and then get ready for the service.  After everyone is ready and dressed, we take the family picture.  It takes quite a while to get a decent picture and then we leave for church.

Christmas eve at our church is a great night.  I think this is our 24th year of sitting in a pew on Christmas eve.  It is a wonderful family tradition.

Last night, my mind was on my sweet patient that was close...the angels were coming and it was just a matter of when.  I had spent the day getting her family ready for the transition and helping them with the feelings that they were feeling and the ones to come.

We sat in the same place we always sit at church and watch the crowds come in.  The church was beautiful as always and I was feeling hopeful for the new year and tender for this family.  As the service continued and the songs were sung, I couldn't get my mind off of this family...wondering how she was doing, wondering if they were sitting with her holding her hand on this last christmas eve.  After communion, and the end of the service was near, I had decided that if I didn't hear from them, I was going to call them and check in.  The church had begun lighting the candles for the last song and I watched my candle flicker as they dimmed the lights.  I was listening to the multitude sing "Silent Night" and staring at the blue and yellow of my candle and thinking about how life is so difficult  and yet so good in so many ways.  Just as we started the second verse, I felt my pocket vibrate and knew.  I pulled my phone out of my pocket and saw that familiar number.  As the lights were low and the church sung...I walked into the office and called the number to hear what I knew had happened.  Through a voice muffled by tears, I heard the words, "Terry, she's gone."

As always, regardless of how ready you are, it feels like the world has shifted on it's axis and honestly, for this has.

I arrived to find the windows open and the fire roaring.  The snow was gently falling and the peace in the house was deafening.  They were tired, relieved and so proud of how they cared for her and even as we did all the things we do after a person dies, they continued to feel comfort in the love they gave her.  The husband told me of sitting with her and being there holding her hand until she took her last quiet, peaceful breath.  He took comfort in her comfort and peaceful face and she slept and finally left this earth.  

After we had finished, we sat by the fire and talked.  We looked at pictures and they told me stories of this amazing lady.  It's so interesting to listen to the love of a family at this time and the things that meant so much to them and what they are going to miss.

It was after midnight when I finally left and I hugged them so hard that I thought they would break.  I was so proud of how they loved her, cared for her and spent every minute making her comfortable and know that she is and was very loved.  

I drove on the deserted, snow covered roads home with some instrumental Christmas music playing on the radio.  I thought of this week and the journey that I got to be a part of.  I shed a few tears as I thought of the future for this family and the pain that accompanies loss.  Then,  I thought of my family and hoped that they had opened that one present that we do on Christmas eve and that they had a nice time.  

I walked in the kitchen and the lights were on.  Then, I heard , "Mom, is that you?" and saw my boys walking up the stairs from the basement.  "We waited up for you just to make sure you were good, " they said, and sat and talked to me for about an hour.  I went to bed with a peaceful and full heart.  It had been a wonderfully holy and difficult Christmas eve.  It had also been a blessing and honor to be part of such a intimate and special time with this family.  And then, to come home to a family of my own who understands my work, honors it and cares for me.

Life is such a difficult, messy and heartbreaking  journey.  But, it's also such a rich and holy journey with such intense love and loss that it makes you want to cherish every moment there is.

Tonight, I your loves, tell them so, kiss them and feel the softness of the kiss. Then you know that when you can do that, you have felt the true meaning of Christmas...and life. 

Merry Christmas,
We'll tawk tomorrow,
I love you,

Wednesday, December 23, 2015

The eve before the Eve...

Some days this job of mine makes me swallow hard and choke back emotion.  Today was one of those days.  Not because I can't do it anymore but because there are just some stories that hit so close to home that you can put yourself in the shoes of the person instead of staying the safe distance to walk with the family.

My day started with a visit to check on the family and comfort the patient...change the sheets, wash the patient up and make sure the medications are on target.  I spent a nice hour in her room making her comfortable and doing the things I love about nursing.  When I was finished, she had a peaceful look on her face and fell gently to sleep.

I called the family into the living room and made them sit down to talk.  I asked them if they had any questions and they began to ask. They asked the hard questions, and sat and listened to the answers without tears.  Finally, the question that I had been waiting for...why am I not crying anymore even though I know I should be?

That is a question that families will sometimes ask and sometimes they will feel too guilty to ask because they think they should be crying more. 

I asked them the story of the illness and what it was like for the last year while she navigated treatment.  They told me how she was diagnosed and she started the first treatment with good results.  "The tumor shrunk to half it's size" and they were flying high hoping for the best.  They moved on with life and began the new normal of someone living with cancer.  Three months later, the patient went in for a scan and the cancer was back...and the tears came.  They rallied and she had another  round of treatment and that was difficult but they were ready for the fight and stayed in it with her.  Sadly, when the scans were done, they showed a progression of the cancer as well.  The tears came again with the thought that they weren't winning the fight.  She did everything right and when an experimental chemo came along, she jumped in with full faith that this was going to be the thing that gave her more time with her family.  That treatment took a toll on her and it was clear to the family members that it wasn't working...and that's when the tears came at night on the pillows so as to be totally positive during the day.  And now, while we wait for the angels to come, the tears have run dry...and they feel guilty because as they care for her and watch her sleep, they are hollow.  

As they told me the story, my tears flowed...watching the pain of a family losing it's leader, caregiver and the one that kept the family humming.  We talked and talked...about how they are going through this now and feel numb but the tears will come.  I said," Don't go looking for the tears because they will find you" and I believe it.  Sometimes, it is a gift to be focused on the care and to be able to put all the emotion in your back pocket until it comes bursting out after the person has gone.  Sometimes, if you think too much about what you are going through, you wouldn't be able to finish strong.  The family listened intently and I think they heard me.  I also told them that this is "holy" time and that they were doing everything right.  She was clean, comfortable and in her own bed with her family by her side.  I told them to tell her everything they wanted to tell her even if she was told already...and to know she hears them.

When the visit was over, we all turned to the Christmas tree that was up in the living room with only lights on it and talked about Christmas past.  They aren't in the mood for Christmas and I can understand why.   I gave one more speech of the day and I meant it.  Christmas is a time that families gather and celebrate.  Families make it a point to be together and to try to cherish the time together.  That's what this family is doing...and doing it well.  They have been together through this for a year and now, when it would be easy to have someone else care for their loved one because they feel ill equipped, they are all in...loving her all the way out of here by being by her side and caring for her every need.  If that isn't a way to celebrate the love of family and what Christmas is about...nothing is.

So on the eve of Christmas eve, offer a prayer, good intentions or anyway you communicate to the universe for comfort for the folks that have hollow hearts from the pain of losing someone...and maybe, when the tears do come again, they can feel them and know that they did everything right to care for their loved ones and it gives them peace and comfort.

It's been quite a day...
Have a wonderful holiday season, Merry Christmas and Happy New Year!
We'll tawk tomorrow,
I love you all,

Thursday, December 3, 2015

I always thought he'd go first...

Yesterday I spent most of the day with couples.  Couples that have been together for a long time.  It is always a learning experience for me to watch as they negotiate this  time of life.  The time that when we are just "talking", we refer to it as "some day" but never think that the "some day" will come.

As I've written before, losing a partner...maybe the love of your life or a partner in crime is never easy.  Even when you are watching that partner change before your eyes due to treatment or pain or sadness due to the circumstances.  Yeah, I know when we are really close to the end, most folks pray for a quick, peaceful ending but not until the cold, hard reality hits .

I sat on the couch and leaned forward for the questions.  These are a set of questions I ask at every visit.  They become the basis for our  talks and the basis for the persons care.  Today, the questions went fast because the symptoms are under control.  "Hurting anywhere?" "No"..."Are you still taking the same medication dose that we switched you to last week?"  "Yeah"...and "that's taking care of the pain?"  and we go on from there.

My patient is comfortable and doing what she can to make each day it's best.  For some folks, they have to tell the story of treatment and how it went and what she felt during it again and again.  At this visit,  she tells me that she was blindsided by what she went through and was really surprised that the treatment didn't work.  When that conversation comes up, and it frequently does,  it's interesting to hear the caregivers take on it.  Seems to me that when a patient goes to hear the diagnosis and the treatment options, they hear only half of the information...the parts that talk about how this or that treatment is going to work and although there isn't a cure, they have a good chance.  The caregiver, on the other hand, frequently hears that there is no cure and the odds...the numbers that the doctor gives for the treatment chosen, aren't great.  For a lot of couples, it is the dance of love...letting the person make choices and trying to be a cheerleader although they know what they heard.

I notice that my patient got really quiet while the caregiver was telling the "odds" and "cure" story.  I watch her face as he talks of the ICU hospital trips, the symptoms and the loss of control.  After he is done talking about that stuff, I quietly ask her what she was thinking...not demanding an answer but wondering if she wants to talk.  To that question, she replies, " I always thought he'd go first".  A quiet settled on the room and the caregiver agreed after wiping tears from his eyes.  "Yeah" he said," we talked about it and the numbers shake out that the husband outlives the wife and she is left.  That's how we always planned things, money, wills, everything as we got older.  I thought she would be taking care of me."

For me, that is one of those moments when I swallow hard and turn my head.  I don't want them to see me cry because it is such a beautiful moment for a couple to see the deep devotion they have for each other...even if they never thought they had it.  I looked over at my patient and asked, "did you think he was going to take such good care of you" to which she replied, "no."  It wasn't a mean "no" or a "no" that had years of resentment tied to it.  It was a pure, sweet surprise that this man was going to do whatever it takes to make his wife of 45 years comfortable and know that she was loved and cherished.     

I looked across the room at the husband and told him how sometimes spouses cannot do this and  we figure out other ways to care for their loved ones.  He was surprised and said he may need help, but they weren't going anywhere.  They took comfort in being in their home, with the animals and the belongings that they have together over 45 years...the pictures of memories and love shared during their time together.  "I wouldn't have it any other way" he said and looked over at her.  They exchanged that knowing glance of a life weaved together for so many years that is changing. We talked more of the gift of being home and being together and being able to do whatever they want that day.  My patient was taking all of this in and watching her husband as he talked of the upcoming changes and his plans to make things easier for her.  I could see her eyes change to admire his thoughts and caring.  

When I finished and began to say goodbye, I reminded them of how lucky I was to be part of this journey.  I talked of things that happen during this time that are unexpected and comforting even though it is hard to see that.  The patient nodded her head and winked knowing what I meant.  That while time is short, this patient is going to be loved so well and so completely until it is not an option.  Then, this husband will rest in the knowledge that he did everything right to care for his partner of 45 years.  

When my heart gets tired and I wonder why I keep doing this kind of nursing, a day like this happens and makes it crystal clear.  We make plans every day on how things are going to go...and then they don't.  We have to change our plans mid-living and go from there, doing the best we can.  Thankfully, I get to see that every day.

So remember, plan well, hope for the best and when the plans change drastically...just love.

We'll tawk tomorrow,
I love you all,

Thursday, November 26, 2015

No experience is wasted...

I sat in the comfy chair in the room where her husband is dying.    I mean, he is not imminently dying but has certainly slowed down.  I visit him twice or three times a week and we sit and talk about life, about the good things, the bad things and how things always shake out.

As I care for her husband, this lady cares for me. In the last 6 months, she has been teaching me about marriage and family at every visit.   When I ask the secrets of a long and happy marriage, she is brutally honest and talks about the good times, the hard times, the times when she would have thought that she wasn't going to make it...and then now.  She always ends the conversation with, "And now, knowing what I know, I wouldn't change a thing." 

Yesterday, as I sat in the chair, we talked about the changes coming and what she is doing.  It was a little tearful because, honestly, while a person is ready for their loved on to die...they are not.  She acknowledged that and then offered her wise counsel..."No experiences are wasted".  I asked her what she meant by that phrase and she told me about all of her times in life when she did things she didn't plan to do and how she learned from them.  

Then, we talked of gratitude in the every day, and how she believes that there is something to be thankful for even in the darkest of times.  I talked of how a lot of times, I can be a "glass half empty person" and she had a hard time believing that.  But I can be and because of who I am, for me, the glass can be half empty.  Once again, she urged me to see beyond myself to all the gifts I have.  

As we sat in the room, I asked her husband as he lay quietly with his eyes closed if it was okay to stay and talk, since I thought maybe we were disturbing him as he slept.  He opened his eyes and said he was happy to have us there and to keep talking.  I looked over for a long time and thought about his wife and him.  They have been together for 60 years...caring for each other and sometimes not but always a team in good and bad.  They have grown children and grand-children and are caring for each other as the time clicks away.  

Wow, talk about experiences...

Then today, I visited a patient that does not have very much time left.  Being here for Christmas will be a stretch and because the pain had become unbearable, staying her isn't a priority.  The priority is relief from pain and good time.

Yesterday, I changed all the medications around and wrote them down and made a check off sheet to make sure that the plan was followed to a "T".  Then I hugged the caregiver and prayed silently that this was the answer for comfort.  Because the patient was hoping for the best, a new plan made sense...

Last night, I called to check on the patient and make sure they had no questions and on the phone, she sounded better.  I went to bed last night very hopeful and praying for pain control.

When I arrived today, the feeling in the house was peaceful, and I could tell when I walked in the bedroom that the changes had worked.  She was smiling, ordering her family around and moving her legs effortlessly.  I wanted to cry...from relief and from answered prayers.  I got in the car and sat for a few minutes thanking my God for pain relief and good time for what I know is going to be the last Thanksgiving together.

In the last 5 years, I have watched people have incredible experiences, and many that they would have rather gone without.  Many have to do with caring for a loved one at the end of life in a known situation or one that has been thrust upon them quickly.  The courage and love I experience every day as I walk with these families is amazing and humbling.  I often wonder when it is my time, will I have the capacity to love and care like these folks.

So on this Thanksgiving eve, as I sit on the couch with my pink wine and my cat...waiting for the cheesecake to finish in the oven, I am thankful.  I am thankful for experiences...the ones when I fail to be all I can be for a family and the ones that I can give the patient some relief from the pain and some good time for whatever time is left.  I am thankful for a job that is a calling, a ministry and a job.  I am thankful that when I leave a patient, I can hug them and then kiss them on the cheek and linger to feel the connection that I cherish.  

As my mentor/friend/patient's wife says..."No experience is wasted" and I have to agree.  It's the reaction to the experience and the learning to be thankful even in the darkest of times that we understand the tapestry of this life...and learn to cherish the good times and hopefully grow stronger in the not so good times.

So Happy Thanksgiving...I am thankful for you!!!

May you have good time, peace and comfort with those you love...and when you kiss them on the cheek, linger and feel the gift of warmth and comfort for  today and always...

We'll tawk tomorrow,
I love you all,

Sunday, November 22, 2015

Watching the profound go by...

Yes, I know it's been a while.  I have been dry...dried up and withering...trying to figure out things that are "unfigurable" and 
asking why about things that have no answers.  Needless to say, I have spent a lot of the last three months in my head.  

Let's just say that me being in my head is not a good thing.  I compare, I fret, I wish things were different or wish things were the way they used to be.  In a few words, I stop living in the now....

I must admit, I do not do change well.  I do love a good schedule and I love a good routine.  I am sure when I was younger and busy, I gritched and moaned about how busy I was and how I wish I had some time for myself...some free time.  You can ask anyone you know who knew me then...

So now, I have time.  I mean, I have time to do the things I didn't have time for before.  I can clean my house, get laundry done and be at home.  Now, I wish I was cheering at a band competition or a baseball or soccer game instead of folding the clothes just right.  Funny how that goes, really.

Last week, I had the distinct honor of being knocked off my feet and told to get out of my head while listening to a patient explain her "goals of care".  The goals of care are a fancy way of saying what a patient wants  to do with the time that is left.  It is what means the most to a person's heart when they know they are  near the end.

I sat in the chair by her bed and watched her as she explained what she has been through.  Almost a year ago, it started with a little cough that didn't go away...nagging and nagging for a few months.  She went to the doctor to get antibiotics for the cough and even after that, it was relentless.  Chest x-rays and MRI's and PET scans later, she had the answer.  The big C...Cancer.  It sounded to me that she handled it well, continued to work and  went to chemotherapy for almost a year.  They told her that there wasn't a cure to be had but there was the promise of more time if she did what they told her to do.  So, she did.  

As with most of the people I have the honor of caring for, she had a circle of friends that drove her, cooked for her and cleaned her house when she couldn't do it for one reason or another.  She was uncomfortable with all the help, the love and the concern that she got because it was usually her doing that for her friends.  I told her that I could understand.  I think if we take a minute, we would all rather be the one doing and loving than the one that is fighting for more time.

So here's the rub...what she really wants to be able to do now is so simple.  She wants to straighten up her home, make a nice dinner and sit with her family and enjoy the meal.  She wants the time back that she had a few years ago.   Because she is near the end of her time, and she is so tired,  going to the table takes every ounce of energy,  so she doesn't get to do that much if at all.  As she was telling me this, she teared up.  She just wants a little more time to do what we all used to do when we had kids to tend to and we were mothering.  I listened as she told me how she  used to straighten up the house and put things in their place, figure out dinner for the family and make sure she had all the food in the house.  Then, she would put dinner on and welcome her family home.  Dinner would be ready and she would sit with them, talk with them and clean up after dinner.  

Sounds like a pretty simple routine that went on nightly in that home.  But now, nothing is simple and nothing is easy.  Now  it's hard to get out of bed because she is so tired and when she is really awake, she feels the pain that the cancer causes.  She has to take her pain medication and then she wants to rest because of the fatigue that cancer causes.  Don't get me wrong, she is not complaining as much as remembering how precious those nights were.

I told her I could relate and tears sprang to my eyes.  I too, remember those evenings when I made a favorite dish for dinner and sat with my family and listened to their day. I looked away because  I didn't want her to see my tenderness  I felt that surrounded her realization.

You see, I miss that so much now that it is just Jim and I.  When I am in my head, I wish I had that time back to imprint it in my brain and feel the feelings and smell the smells and remember the looks between the family.  But...and this is the biggest but ever...I can call the family together and make a meal and talk about the old days and feel the new feelings of a family that has time.   This sweet girl cannot.  She can't do it and that is all she wants.  That is a profound loss of control, knowing that you can't do something you want to do and you know your time is running out.

So what is the answer for her?  To make her time with her family as beautiful as she can.  To honor her wishes and give her every medication to keep her comfortable,  give her every moment to be with her family undisturbed...let them be and love each other as much as they can.  

I understand what it is to wish that things were different.  What I cannot comprehend is running out of time to make new memories. To live with the courage to know that every time you look at your husband,  your children that the time is measured and one of these days will be the last time...deep and difficult thoughts.

So, what do we do?  What do I do?  I think it is time to stop wishing things were different, that the kids were little and that I did  a better job.  It is time to live in the now, love in the now and be okay with what is.  

You see, there may be a day, hopefully not soon, that we have a cough that doesn't go away, or a lump in a place it shouldn't be or test that didn't turn out to be clear...and we are in the shoes of my dear patient.  Wanting to be able to do the simple things that show love to our family, our friends ...but are too tired and cannot.  

Profound thoughts for a Sunday night but thoughts that can make the fabric of your life richer...

When we live in the now and understand that we have a life to live and not just watch...when we give ourselves and love each other every day...that's what we are called to do and be.  At least, that is what I believe as I watch life come and go daily.

We'll tawk tomorrow,
I love you all,

Saturday, August 22, 2015

I am an "empty nester"

Wednesday around noon, I became an empty nester.  I took my last child to college.  It is a little more than an hour away and it is a really  nice college.  He will do great there and he started his exit right after graduation in May...really.

All summer, I held on tight and tried to hold him close.  He wanted none of it.  He got a job, he camped, he hiked and he got a life.  He was on his way.

I have no choice now but to figure out what's next.  In my head, Jim and I got married and we began prepping to have a family.  We bought and built a house, got decent jobs and learned how to negotiate differences all in preparation for being parents.  At least, that is how I saw it.  Three years later, along came the the queen, her brother next and then ...the last one.  

We dove in head first and parented.  We sang the songs, we got the mini-van, and we became Mom and Dad.  We even referred to each other as that and still do.  

Now, they are all on their way.  My first is  negotiating adulthood with all of her might, the second one is exploring life with abandon and now my his dorm doing God knows what.  

So back to me...I didn't work on Wednesday, but all of my patients knew that I was taking my last kid to college.  On Thursday, as I showed up to see folks, I was quizzed and comforted.  My patients, who are dealing with illness and end of life stuff took the time to comfort me.  Needless to say, I was humbled.  

Then, at the end of the day, I went to a party for my boss and her husband to be.  The whole office was there and we were celebrating this new union.  Everyone I talked to asked how I was, and if I was doing okay taking my boy.  I finally realized while I talk way too much, I have so much to be thankful for.  These folks don't have to listen and really, they don't have to care.  But they do.  Wow, things like that make my  life so rich... 

It is going to be an adjustment to have more time to do things I want to do.  I mean, I don't even know what I want to do...really.  But, I guess I have time to figure that out.  

So, as I wrap this up, I want to thank all of the folks that asked and listened and comforted me as I negotiate round 3.  This round has the potential to be even better, as rewarding and as holy as the first two round have been. 

Once again, it's about perspective and managing expectations...something I tell my patients all the time.  I guess it's time to take a dose of my own medicine.  

Here's to being an empty nester!  I guess....

We'll tawk tomorrow,
I love you all,