the big finish

the big finish

Monday, May 9, 2016

"Because I'm the Motha" (in a NY accent)

In my house, we tend to repeat things well beyond the time it is useful.   The problem is, we laugh about those repeated things again and again, so they become funny.  Two out of three of my children appreciate that and one does not.  He did leave for college and has a new appreciation for home and and has been mocking my NY accent, so he is coming around.

Since yesterday was Mother's day, this post is about kids growing up and leaving.  My last child left for college last September, but I had the good fortune of having my daughter move home.  Now those of you who I talked to every day, probably won't see it that way and I must admit, I rode her hard and I was out of line.  That child was sure of her dreams and goals and I had no patience as she was "masters prepared engineer" and needed to get a job in an engineering firm and start her life.  The link below will lead you to her blog and if you take a minute to understand her...you will agree, I was out of line.  

http://wondermarkstheroad.tumblr.com/

At the time, I was doing what I thought was right because that's what I did.  I got a job right out of college, looked for a husband that would be an awesome father and wanted to start my life.  I didn't put a whole lot of thought into caring for people...I mean, I was a nurse and wasn't that enough?  I thought so.

March 4th, 1992, my daughter came into the world after I thought I knew exactly the right way to live my life and how I would raise her.  Funny thing is, she raised me.  She was a miracle to behold and like I have said in other musings, she changed me...my life plan...and who I wanted to be.  I wanted to be someone that this kid looked up to and I wanted to make sure that she knew she could do anything she wanted and that she was loved.  Jim and I would eat dinner with her in her "bouncy" seat and marvel at the miracle that our genes had created.  Not because she was the perfect child (although we thought she was) but because we had this human being to raise. 

As time went on, I decided that there was nothing more important to me than being a mother.  I had my second child on a Friday the 13th in May with my dear college friend and Jim coaching me on.  I brought him home and the first thing my oldest did was ask to "pet" him.  True to form, she became his mentor, the person who told him what to do and how to do it and his biggest fan.   While I was exhausted with two little ones, I was over the moon that I had the privilege of being their mother.

The last one came out of nowhere.  My mother passed away in February of 1996, I was 31 years old and next thing I knew, another one was on the way. ( I guess you call that being comforted!)  Because he was a "surprise" if there is really such a thing, I didn't get ready for a baby until a week or two before he was due.  Maybe, I thought, if I didn't get ready, I wouldn't have 3 kids under 5.  

Thanksgiving came and went and old Howie, didn't show.  I even had my father in law and sister in law staying with us to watch the other two because it was getting close.  He came on a Sunday morning after church in a hurry and was a strapping 10 pound dude.  He completed our family and I stayed home with him while Jim took the two other little ones to cut down our christmas tree.  In my mind, there was nothing better than three little ones at christmas time.

But, now, 20 years later, there is.  To watch my oldest live her life volunteering for the Peace Corps in Peru and dreaming big...not big with stuff but big with helping people is a dream come true for me. 

For my middle guy teaching in an inner city school trying to help 6th graders with math and coaching baseball...just hanging with the fellas hoping to make a difference by loving kids makes me loud and proud.

For the "surprise" child, he watched quietly and took in the life decisions the other two made and began to make his own.  This summer, this guy will spend it in service for the whole summer in Juarez, Mexico building houses.

https://www.youtube.com/watch?v=kwnOo6Ehizc&feature=youtu.be


So I send them off...All with plans that are so different than mine. They have plans to serve, to love and to try to make the world a better place with kindness and service. They humble me and force me to be a better person.

Yesterday was Mother's day and I spent it with my boys.  We hiked and talked about when they were little.  They remember the things I did right and all the things I did wrong.  But, they still made time to hang out with their "motha".  I cannot tell you how lucky I feel.  
As we sat at the brewery, (I picked that for dinner because I'm the Motha), and watched them banter about memories and listen to them gush about how proud they are of their sister...I could not have asked for a nicer mother's day.  You see,  they have taught me more than I can convey and they have given more joy than any one person deserves.  And most of all, when I ask them to do something and they ask me why...and I reply, "Because I'm the Motha" they laugh and do what I ask!

We'll tawk tomorrow,
I love you all,
Terry









Saturday, April 30, 2016

When it's time to leave...

I'm sitting here this morning drinking my coffee, looking out the window.  It's cold and dreary with another round of spring snow.  The sky is gray and low and honestly, the whole scene matches how my heart is feeling.





I have spent the week talking about leaving.   Leaving town, leaving this earth, leaving families and friends, leaving pets.  It's been exhausting and sad and I often wonder why life has to be this hard.

I have a few patients that I have fallen in love with after having no intention of doing that.  When the new year came, I had a talk with myself about becoming more "professional" and keeping my "boundaries" intact at all costs.  Stop falling in love and just nurse...

After this week, I can tell you I have failed miserably and it is coming time to pay the piper.  I have a few patients that are getting close to leaving this earth.  They are prepared to go and are just sad.  I am just sad right along with them...

One of my folks came to me with a to do list that had to be completed.  It was not my idea of a to do list of someone who  was dying but of someone who was getting ready to move out of a house.  Twice a week, I would call and plan a visit and I would get the report, " I got most of my room cleaned out and organized, took a load to the dump and a load to donate.  It has been a fantastic day."  Often I would hang up and laugh and tell myself that I need to talk to her because this is no way to die...She needs to slow down, hang with family and get ready.  But on my weekly visits, she was full of joy and talked like a teenager at how she was getting organized.  We didn't talk directly about her dying or getting ready to leave, but it was an unspoken conversation that would be had at another time.

Well, "another time" has come.   She is organized and if you were to do a moving timeline, the movers are ready to come and get her stuff.  She knows that it's now time for family.  Her family arrives on Monday for a visit.  We didn't talk about that on her "to-do" list because I suspect that would come when it was getting really close to leave.  After catching up,  I did my "nurse" stuff and began to talk about what I found...and she agreed.  She looked at me with her sparkling blue eyes...and said, "I know it's growing but I'm still hoping for a miracle" and after the lump cleared my throat, I responded, "Me, too."   We sat for a time in silence, holding hands with tears running down our faces...knowing she is leaving soon and that the time has come.

I finished my visit wishing her a great weekend and to call me because I was going to be around and bent down to hug her.  She kissed me on the cheek and told me she loved me.  I responded in kind.   Then I walked out the door, wiped my eyes and stuffed all the sadness deep down in the bottom of my heart and drove to the next patient.

The next visit was very different but similar.    I knocked on the door and walked in with my usual, "hello, it's Terry, the nurse" when I could feel the sadness of the house envelope me. The kitchen was empty and the caregiver came out and informed me that it had been a sad morning.  I walked into the  room to find my patient holding hands with his wife, looking at her with his mouth open sobbing.  Occasionally he would take a breath and let out a moan.  She turned to me and told me he has been doing this more in the last few days and he is just very sad.  

He has been ill for a very long time and was told 9 months ago that he would be gone in 3 to 6 months.  He blew by those dates and continued to sit at the table and have meals, be read to by his wife, visited by his sons and grandchildren and did life.  We didn't talk much about his leaving because he was doing so well. But, in the last few weeks, something has changed.  He knows his time is closer and he is just sad.   

When I took her place to check on him and asked him what was wrong...pain somewhere, etc...he sobbed his wife's name.  Then I told him that I know he loves her and that she will be okay and we will take care of her...he sobbed even harder.

His wife and I left him and sat at the kitchen table, trying to figure out how to get through this time.  She wondered if there was anything more she could do to help.   I explained that he is doing "the work" of leaving and some people just become very sad. I told her the thing to do is sit with him in it...cry with him, love him and let him get there.  While it's really hard and heart breaking, being in it with him is the only thing left to do once the physical stuff is taken care of.  We talked about how she can't change the situation but she can be with him in it, either in silence or with conversation.  

I sat for a while at the table wondering if I had told her the right thing...is there some other way to take all this pain away?  I came to the conclusion there is not.  I told her that he was so lucky to have her and that she was doing everything right and that he just doesn't want to leave her.  Although it is becoming his time and she is prepared, he just wants to stay.  She teared up because she is so tired...tired of wondering when the time will come, staying up nights holding hands and reading and feeding and thinking...all the things that are loving and right and holy and comforting to do when your husband is dying.

I pulled out on the street and thought of myself and my daughter leaving.  Granted, she's in Peru and she signed up to serve in the Peace Corps, but honestly, even leaving for a little while makes your heart ache.

Life is so hard...and so amazing...and then so heartbreaking again. You get a diagnosis, you care for a loved one, you sign a paper that closes out the marriage that you planned on lasting forever, you take a child to college,  or God forbid, you bury one...

For my patients, they know it is time for them to leave.  They both know that  they are going to a "better" place.  They know it's a place  where they are not hurting anymore, or feeling nausea all the time unless they take a pill...but sometimes even knowing that and knowing it's time, they  don't want to leave.   That's the hard part and the part that sits in the  heart and stirs the soul forever.  

So leaving is hard...because usually we love the people that leave. But love is a gift...and the experiences that come with love are the gifts...the things that keep us afloat in this life. 

So the wish for today:
May we love so hard that when it's time to leave...however that is, we recognize the blessing that we experienced and use those memories to heal our broken hearts.

We'll tawk tomorrow,
I love you all, 
Terry

Sunday, March 27, 2016

The wall...and I'm not talking Pink Floyd

As we left the US, things seemed as they always do...
Then, when you look to the right, you see the wall separating the US and Mexico...the wall that separates us.



As I turned from the wall to the neighborhood that we were driving in, it was obvious that what separates us is much more...


We have more and they have less.  I guess that is a simple statement and honestly when you pick it apart, it is not simple at all.  We have more stuff, more money, more food, more conveniences, more doors and windows to shield us from the cold.  We have more medical care, more cars that run and more electricity.  So, yes...we have more.  They have less...of all the things I mentioned.

But, do they really have less?  Sometimes I wonder.

Every year, I head across the border to build a house.  But, in my mind, I head across for other reasons...all having to do with what I want.  This year, I went because I wanted to hang with  my college boy and I knew that if I was there, he would have to talk to  me.  I had no plans of connecting with families or seeing anything I haven't seen before.  You see, I have been doing this since 1999 and know it all...

On Sunday, Jim and Howie and I went an scouted the site.  It was in Anapra and is built on a land fill...a dump.  The roads are cut through mounds of garbage and the smell is pungent.  If you look down, you can see garbage...diapers and feminine napkins, tiles, glass and things that were thrown out.  They have lost the sharp edges from people walking on the objects although if you listen when you walk...you can hear the crunch.

The site was right next to the home that some of the family lived already.  They wanted it built close, so they could add on and be together.    As we walked up, you could see they were not sure if it was true.  These three gringos were coming to figure out how to give us a house?  Jim smiled and used his limited spanish to assure them that indeed tomorrow morning, more gringos were coming to work.  

I always wonder what the big deal is when we build an 11 x 14 house with two rooms, two windows and one door.  But on Sunday, when I walked into the home they live in now...a 9 x 11 ish frame with a curtain dividing the house in half with two beds pushed together for 5 of the family members to sleep.  On the other side from the beds was a stove and two plastic chairs to be the kitchen and living room...no windows and a curtain for a door.  So yes, it is a big deal.

On Monday, we showed up...all 21 of us, to build.  We had a 80ish dynamo and a 7 year old on our team.  We were all there for our own reasons to build a house for a family.  That was really all we knew.  As the day went on, the family came over and spent time with us...not thanking us but wanting to help build the home that was to be theirs.  They weren't looking to have it built and then look it over and move in...they wanted to help create it with us.   As much as my rock hard heart didn't want to soften, to watch this family become more and more excited each day with this place to call home...it began to melt.

We framed walls, framed the roof, poured the concrete and smoothed it, drilled holes in the studs for the light and the ceiling fan, put chicken wire on the outside and insulated...the place was taking shape.

Then, Jesus, the father asked our group if we could go and visit his son and pray with him.  I didn't think anything of it because I was busy but as the day wore on, we decided we could break and go.  We piled in the vans and drove 15 blocks to a rented house where they live now while they wait.  He told us that his son was ill and in bed and that he was depressed.  

We arrived to find a 22 year old boy on his side with his eyes closed in a small room.  On a table next to the bed was his "things", his dressings and things I am used to.  We stood around and I kneeled next to him and began to ask about his condition.  His mother told me that he was unable to walk anymore and was losing function in his left arm....and then she pulled back the covers and showed me his bedsores from being in bed for 6 months.  She told me that she can't go out much because he is unable to be left alone and he needs her.  She started to cry.  I looked away and began to get angry...I felt so helpless.

I went into nurse mode, and asked a million questions about how she is caring for the sores, how she is keeping him off of the pressure points, about the plan of care for her boy.  As she answered I realized where I was.  I was in Juarez, Mexico where you don't get nurses to change dressings three days a week with fancy dressings and creams...you don't get cushions and wheel chairs to change the pressure on spots.  In Juarez, you get to care for your boy as best you can with gatorade to put on dressings and pack in wounds because it says it has vitamins and minerals.

I slowed down and began to ask her son about pain and movement and things like that.  He told me he has pain but can't afford the medication...ibuprofen...to help with it.  

I was humbled by his mother who was like any of us...a mother who loved her boy deeply and wanted to do whatever it took to try to make him well and out of pain.  I was humbled by the surroundings and the lack of medical care and information available to her to care for her boy.

On Wednesday night, we finished the house.  It was beautiful and we were all excited.  I couldn't get this boy off of my mind and went to the big grocery store to see what I could make for makeshift wound care to heal this boy.  I found dressings, antibiotic ointment and things to help this boy's skin.

On Thursday, we had a huge party and gave the home to the family.  It was a great day and the family was so happy.  Then, we all went up to see the boy again and I got to give the mom all the presents I bought her so she could help her boy heal.  We sat and I taught her everything I know about wound care and skin care and diet and healing.  We gave them a cooler with cold cuts for protien and we held hands while we talked.  Mothers who want the best for our boys do that.  I told her she was doing a fantastic job caring for her boy and to keep doing what she was doing.

When it was time to leave, she cried and thanked us for caring about her boy.  I told her that we are mothers and we love our boys no matter who we are and where we are from...we are the same.  
We are mothers and fathers and family that loves deeply and wants only the best for our loves.  We are the same yet we are different.  In the US, we have dressings and help and medical care that is available if we need it...even when it is not the best.  We have something.  

But, at the end of the day, the family we built for was humble, thankful and joyful.  They cried when we handed the keys over and they cried when we talked of their boy...but through the tears, you could feel the joy of life.  The joy of having family around and the joy of being honored by caring for each other...

So I ask...who has more?  Are there things we can learn from each other?  While we toil away making money and buying the latest of this and that and worrying, they seem to accept what is and love each other.  Isn't life really all about the people we love?  I think because they live a hard life in so many ways, the joy they get from each other is apparent in all they do.  So I ask again, who has more?  Who deserves more?  Just questions to ponder as we go....

Back to the wall...this is the tall wall that is to keep the mexicans from coming into the US.  It goes on for miles and there are cameras and flood lights on our side and border patrol trucks at the ready... 


What do I know about walls?  If my boy needed care that I could not get here, or I had a home made of cardboard and pallets and was freezing, and tried everything I could do to change that in Mexico without luck...I would not rule out getting past that wall to a life where I was able to care for my family.  

That is what I learned on this trip...we are the same yet different, sad yet joyful and we all want to care for our loves...

We'll tawk tomorrow,
 I love you all,
Terry


Friday, March 11, 2016

Momma told me there'd be days like this.






Today was one of those days...the sky was so blue and it was warm and calm and smelled of spring.  Everywhere I looked, I could see hope.  I know it sounds so opposite after all the disgusting politics that are going on but today was just lovely.  When I turned the corner from my house, I saw a mamma dear and her babies hanging out waiting for me to go by.  I know it seems a little early, but life was that good.

I got to my first patients home and it was cool out and I shivered at I walked to his front door.  I did all the things I do, the IV's, dressings, empty the garbage, fix them breakfast...the things that my patients expect from me and then sat down to talk.  For some reason, today didn't feel so rushed.  I left his house, wishing him a great weekend and headed to patient number two.

This patient, I have had for a very long time.  She is old, frail and has the sweetest smile.  Today, though, things seemed different.  She was concerned, looking off into space and almost seemed like she was in pain.  Her caregiver was concerned and wondered what was going on.  I looked her over and really couldn't find anything obvious to think about or try to fix so I gently stroked her arm and watched her.  She was thinking, and it was obvious she had something on her mind.  Slowly and quietly (believe it or not) I asked her some questions...do you hurt anywhere? What can I do to help you?  You seem unsettled...what's going on?   Knowing her as I do, it was obvious she is unsettled but it didn't seem she was in pain.   Sometimes, I told the caregiver, there is work to be done that we don't understand and we just have to make sure we are supporting the patient in that work...just keep her comfortable, love her up and we will watch her.  Then I told her I was going to be around all weekend and to call me if she needed me.  I sat in the car in the driveway and wondered if she was heading out of this world...

My third, fourth and fifth visits were lovely.  Nice homes, nice people and a joy to care for.

My sixth and last visit of the day was around 3 pm.  I arrived to find my patient doing well and enjoying the day.  I did all the "assessment" things I need to do and sat in the recliner.  She sat in her chair and we began to talk.  We talked about her family, her grown kids, grand kids and how wonderful and smart they are.  We talked about her life when she was raising them and how different they were from each other.  We talked and talked and talked.  Before I knew it, I had been there an hour and 15 minutes.  I decided it was time to finish up, so I walked over to her medication planner and she and I talked through the medications and why she took them and when.  

Finally, we walked through the kitchen and stopped at the refrigerator to look at what she had on it.  It was filled with pictures of her life, when she was a young mother, her husband, her dogs.  She went from picture to picture and talked lovingly about the folks in them.  She told me of the grand kids, the daughters in laws, the great grandkids and when they had come to visit.  It was a 45 minute snippet of a life well lived and loved.  Finally, I asked her about the picture in the middle, one of her husband who is gone, smiling a huge smile right into the camera.  I looked over at her while she was talking about him and she had a big smile on her face.  She ran her hand over the pictures on the door of the refrigerator and then she turned to me and said, " I like these pictures here because whenever I go by, I look at them and remember what I good life I've lived".

She  walked me to the door and I bent down to give her a hug and I felt a sweet kiss on my cheek and heard a quiet " I love you" in my ear as I pulled away.  I told her I loved her too and I would see her next week...

There are days in my life that I rush through and when I get in bed, I can't remember what I've done.  I have regrets about those times as many of them were when I had three little kids and needed to get them through the day.  Now, I am trying to slow down and remember how my heart felt, what something smelled like and the colors in the room.  

I'm so glad I took the time today to slow down, listen and feel that kiss on the cheek and whisper I love you...because my heart felt like it was going to burst, the cheek felt soft against mine and all I could see was the bright light of love.

It was a beautiful day...and I have to try to make all my days like this...

We'll tawk tomorrow,
I love you all,
Terry 

Saturday, March 5, 2016

If you don't laugh...you'll cry...

It's been that kind of week.  Honestly, every week seems to be that kind of week when you do Hospice nursing...so I guess this week has been no different except it was.

I like to make light of things that are intense...crack jokes, make fun of myself, and usually talk about how much wine I am going to drink when it's all over.  If I look at the team I work with, that is a way that we get through the days that are so difficult for families and for us...we laugh it off...and sometimes we all go out and drink wine too. 


When  you work with the dying, and do hospice care, you are on a team. (Thank God).  The team meets every two weeks to talk about the patients and the care they need and what we can do to make their time and their family's time with them better...sweeter and more profound.  The meetings have the nurses, the doctors, the chaplain, the social workers, the volunteers and who ever else is needed to make time better.  The meeting is mixed with questions, laughter, support and new ideas for the person's care.  It is something that I look forward to especially if I have a patient that I need help managing either symptom wise or emotion wise.  The thing that is not generally seen at this meeting is tears.  It is usually all business with an exchange of ideas as if we are fixing symptoms on a broken vehicle or dealing with a recipe that we haven't followed directions but need to change some of the ingredients to make it taste better.  We just don't cry a whole lot.  Now, we tell jokes...we laugh, but otherwise we are serious and down to business.

Last Thursdays meeting went along in the same fashion that we always do.  We started with the patients that have passed away and we talked about how peaceful the passing was and how the family is doing and then we asked our social workers to contact them for grief work and moved on.  It was very quick and solemn.  After that we moved on to the patients that we are caring for and the symptoms and things that we want to address.  We include the family and if they need support, we add that.  It was a really helpful meeting and we were done in record time so we could go and put out new ideas into action.

Just as we were breaking up, a nurse came in that was obviously upset.  She has been taking care of a patient for a long time and the end is near.  As she began to talk about the things she needed help with, she broke down in tears...and we all quieted down and stopped moving.  All at once, she was peppered with,"what can I do to help, should we do this, or should we do that?" to which this nurse just kept saying "yes, I need help."

You see, when you care for someone in their home, you become special to them even if you try not to and you try not to have them become special to you.  But, from the moment you knock on the door, sit in the chair by the bed, make a cup of coffee or food in their kitchen...you become family.  So how,does a nurse who needs to keep boundaries of some sort do that when you become family to folks week after week? 

The quick answer to that is...you don't.  You put your heart right in the middle of the situation and you do everything you can do to care for them like family.  Yep, that's what you do.  You know why?  Because when you let someone into that time of life when you are hanging by a thread and cannot deal with one more stranger,  we walk in.  When we walk in, we don't tell you that you are going to beat this cancer and live forever, although I wish we did.  No, what we tell you is what we can do for you at home...where you haven't been much because of symptoms or because  you have been doing chemo and it has been beating you down..in other words, you have had no control.  When we walk in, we give you your control back...you wanna sleep?  OK.  You want to take more pain medication because you still hurt?  We figure out what you need to take to get your pain controlled.  And your family is wondering how to help you?  We can give them ideas around that too so you and they can have the best time you can with what you are facing...

When we get you all organized and comfortable at home, we leave you with your family knowing we are a phone call away any time...day or night.  So yeah, we turn into family, them to us and us to them.

I don't know why we were a little surprised at the tears and frustration at the end of the meeting.  We have all felt that way more than we can even let on and I know many times in the meeting when I am caring for someone who I don't need help with but know I will miss, I swallow hard and say, "There fine, He's good...Just go to the next one" and raise my head high to keep the tears from sneaking out and down my cheeks.  For me, it's not because I am too tough to cry or because I can't...it's just sometimes I get afraid that when the tears start, I may not be able to stop them.

Thankfully, our team rallied around this awesome nurse and figured out what we needed to do to help her patient and to help her know that sometimes we do everything in our power to help and it doesn't work.  Kind of like life...we think we are on the right path and things go south...

So thank God for families...our own, our work families and I am thankful for my patient families as well.  The folks that have the courage to love people out of this world when they would rather be doing anything else.  

So...see...that's why I say, if you don't laugh, you'll cry.

We'll tawk tomorrow,
I love you all,
Terry

Sunday, February 28, 2016

What's better...to know you are dying or to just drop?

I always get this question from families at one time or another and honestly, I don't know how to answer it.  I believe there are things about both ways that can be appealing.  

Last week, I had a patient that had been battling a terminal disease for almost three years.   He knew that there wasn't a cure and he knew that eventually it was going to be his time.  He would have a round of chemo, get knocked down and then get back up.  He would do the things he loved, hang out with his family and cherish the time.  At least, to hear it from the folks he left behind, that is what he did.

His last hospitalization did not go well and he had finally heard those words, "there is nothing more we can do."  He immediately told his wife to take him home...do not stop at go, do not collect that $200, I want to be in my chair at home now."   Being the amazing woman that she was, and that her family knew her to be, she took him home.  When I met them, it was apparent that he was failing and didn't have time for small talk with me.  He wanted his family close and my job was to make sure they had the tools to care for him at home with love and comfort.  

So that's what I did.  Thursday night, we got him home and in his chair with his family, his pain medication and his cigarettes.  The kids (young adults with families of their own) stayed the night to help care for him and keep him safe and happy.  It was a long night for the whole gang.  

In the morning, everyone who needed to come to tell him good bye and farewell showed up.  The house was full of folks with food and drink and music.  They told stories of the patient and how much he meant to them.  It was good but also bittersweet.

Then, as some folks were filtering out and others in, the grand kids showed up.  They slowly walked in and got on the hospital bed next to Grandpa's chair.  They had faces of confusion as they watched their "papa" dose off.  I looked over to see my patients son sitting at his father's feet, talking to the kids in a quiet voice, explaining that papa was sick and has been for a long time and now it was time for him to go.  They all looked at their grandfather waiting to see what he would do and he woke up, looked at them, and broke into a big smile.  It was one of the sweetest times I have ever seen of a family and the love they shared.  The little ones beamed as they watched "Papa" smile at them and the older ones just took a breath in and relaxed.  Then, one by one, they gave him a little kiss on the cheek and the designated family member to care for the children took them home.

My patient's son was in tears as was the room.  That was an intimate piece of time that was just exactly what was supposed to happen for "Papa" and for the kids.  The chills ran down my spine and I knew I had just witnessed something profound.  When I began to explain the signs that signify that death is coming, I asked the kids to make sure they had told their dad everything they wanted him to hear.  One by one, they told me of the special times they had with him after the diagnosis and the connection and peace they had with him leaving them.  They told  him daily how much they loved and appreciated him.  They said that they knew time was limited and didn't let anything be taken for granted when it came to letting Dad know they loved him.  The kids were at peace.  He passed quietly and comfortably in the night with his kids and wife around him as he left.

They called me in the morning and when I got there, the house was peaceful and organized...they had finished strong and just how "Papa" would have wanted it.  They were sad and relieved and holding each other close as they went through the day.  They were an amazing family.

So was that good?  Would you rather that then just being here one day and gone the next.  Still hard to say really....

But, when you think about it...limited time gives you is perspective.   I think it makes you take stock of what you have and what you don't...of how you want to be remembered, and of how much you want others to know how much you love them.  You can also take comfort in knowing how much they love you.  

For instance, a few weeks ago, a patient's friend went skiing and had a heart attack on the ski slopes.  He was an older gentleman and was with his family.  I asked my friend about this question and she responded that she was sure that they had all their "accounts in order".  Interesting way to put it but I understood what she meant.  They were all together, celebrating Valentines day with the whole family and spending time together.  Hopefully, they knew how much they  loved each other and there wasn't much left unsaid... 

The reality is that day to day life isn't so easy...to let by gone's by by gone's or to let things go that really bother you go.  But, I think, it has to be a priority to tell the folks you love everyday that it is true.  Even more important, is to tell the folks you still love them after a fight or a misunderstanding because that kind of thing can haunt you the rest of your life.  I know...I have made some mistakes in that area and am convicted as I watch families love each other so completely at the end...

I believe the question isn't, is it better to know you are dying -  but do all the people in your life that you cherish know how much they mean to you?  That is the question to think about and make a change if they don't.  As you and I  know, life is both long and short...long when you are suffering and short when you know the end is near.  

I would argue that for some of us, knowing the end is near will change us...to make amends and love hard and savor the love, the kisses and the closeness of those we love.  The thing is, we never know...really...when the end is near, so why not try to do that more?  To savor that kiss from our love, that time with our kids, our friends and our people... knowing it will be a memory some day and hopefully, a memory that we cherish and take comfort in.  

Because, really, that is all we can do in this crazy world...love each other better, right?

We'll tawk tomorrow,
I love you all,
Terry

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 begs...is 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 closure...to 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 patient...so 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,
Terry