Isn't life just a 'U-pick" flower garden?

Isn't life just a 'U-pick" flower garden?

Friday, September 5, 2014

The right way to die...

Signing up for hospice care is a big decision.  Most folks sign up and decide they are okay to stop "seeking" treatment and think that since they are not treating their condition/cancer, they will die...and they hope that it comes quickly.

If you are getting blood drawn and levels told to you and you drive many miles to sit in a chair to have chemo dripping in your may think that you will leave this earth quickly because you are not doing the things to stay alive.  If you take only one pain pill because you might get addicted even when you still hurt alot and could use two...after you get comfortable, you think you may die quickly.  

Here's the may, but in most cases, you may not.  As a nurse that cares for the living and the dying...I honor what you think you need to do and what you think will happen but honestly, life as in death...things don't always happen as we think they will.

I have a patient that is young and he is very sick with cancer and he was supposed to die 6 months ago...looked terrible and thought it was over.  Then, they changed things around and he is still here, living his life as he sees fit, loving his young wife and living every day.  

I tell my patients..."You can always die, you have cancer/illness that can take you...but for today, you might as well live."  And they do...and they do it well.  I can't change the diagnosis but I can help that person understand that the time they have is theirs and theirs alone...and there is no right or wrong.  

I thing most folks entertain what the end of their life will look they are supposed to die.  I love that movie, "Grumpy old men" when the guy dropped dead and Walter Mathau said..."Lucky bastard" because he didn't know it was coming.  I think that's how I want to go but I know I will probably not go that way!

Anyway, I'm here to tell you that there is no right or wrong way to die...only the way that you do it. When you get that diagnosis and fight the good fight and decide you want to stop the fight and accept, the fight is over but life is not...the living is not.  It's changed and the focus is making the most of every minute with who you want to.  You become the director of your time... If you wake up one day and can't stand the thought of being awake dealing with your life, you choose to take the day to sleep.  Because you are tired, sad and need a mental break...just do it and languish in the comfort of your bed with whoever you want in bed with you and dream sweet dreams.  If you need to get your life in it. Then, you get to rest in the comfort that all is in order for when you need it to be.  Some folks are stoic and don't want to miss a second of time because they need pain medication...okay...but I know when they really need it, they have and will give themselves permission to be comfortable.  Then there are some folks who want and need a dose every time they can have it and that is the right way for them to handle the pain and cherish the time they have.

I am thinking of this tonight for a couple of reasons...I am so lucky to care for folks in their homes...and be with them in the most difficult and intimate time of life.  I get to encourage them to live without limits, to remember who they really are and who they really love...authentic feelings that come when we know time is limited. 

Because I have this honor, it makes me more aware of my blessings, the profound moments in my life and the things that don't matter.  I am one lucky old broad.

So this your people, look deeply into their eyes and drink in the moment...laugh at silliness and cry at the sadness...feel it all because we never know when our time is limited and we wish we did that all along.

Just do it!
I love you all...and I do,
We'll tawk tomorrow,

Wednesday, September 3, 2014

My kind of church...

Last weekend, a group of us trundled up to the mountains to attend a campout.  It was billed the "Evergreen Lutheran Labor Day Campout" and it was advertised in the church bulletin.  I was the organizer and I worried a little bit about how it would turn out.  

For starters, the weather was pretty bad.  We were in a beautiful spot on a lake but it was cold, rainy and foggy.  The families that signed up had little kids and we were all in tents.  That can make for a difficult and unpleasant time.

The hikers

As the crowd gathered on Friday night, I started to get excited because we had all (or I should say) most ages.  Our youngest camper was 3 and our oldest camper was mid 60's.  We had young parents, school agers, high schoolers, and college kids to round out the group.
The ladies at the pool

We were all a little anxious about how this campout would go.  The group was so diverse, the weather so wet and what we had in common was church...the fact that we had faith.  Whether is was a "weekly attend church faith", or a "I loved the campout last year" faith or the " Terry begged the family to come" faith...we had our church in common.  

The fire was started around the camp fire and the camp chairs began to fill the circle.  The snacks and drinks began to be shared and the smore sticks were unpacked.  The next thing we knew, the guitar was pulled out and the soft guitar music began while everyone relaxed.  As the night progressed, the little ones found laps other than their parents to the delight of us old folks.

Jim and  his little buddy

At one point that night, I looked over at my friend with my heart so content...a roaring fire for warmth and young and old alike visiting, connecting and being together.  My buddy, Sheryl, who has a heart like no one I know said, " this is church" and smiled.  Funny, I was thinking and feeling the same thing.  

I think of the love of my God similar to the deep love that I felt when I had my kids.  The unending love that we experience with the most precious of those moments on the campout.  

If you were there, you felt it at times.  Maybe not when it was so cold in the morning waiting for our coffee or when the smoke was burning your eyes, or when your feet were so cold in your sleeping bag that you wanted to go home...No, not then.  But I bet you felt it when you looked over and saw your little boy sitting on one of the big boys laps, or when the duo was playing their guitars and singing or when I got to have the sleeping boy snuggle into my lap for warmth...Nothing flashy but spiritual and profound.  I always feel what I sense of the love of God in connections with people, time spent heart to heart even when it is subtle.  Those are the times that stir my soul and fill my tank for all the other times in life when things are hard.

The nice thing about this weekend is that we got together because we attend the same church.  I don't know if we would have if we didn't have a faith or a quest for a faith in common.  I also don't think you have to go to a church to have times like these...but I'm sure glad that we do!

The gang 

Thanks for the memories and the wonderful weekend.

We'll tawk tomorrow,
I love you all,

Thursday, August 21, 2014

You're not going anywhere anytime soon...

My college friend wrote a blog today that is at the core of what I do and why I do it.  Follow this link and read how a when a person gets tired of fighting, and taking care of everyone else it is a gift to support them as they  "let go".  

Letting go doesn't mean that when they sign the form for hospice, they go quietly into their bedroom, lay down on the bed and die.

Actually, for most people, it means exactly the opposite.  For most patients that sign up for hospice, they want to be able to do what they want and can do without driving to an office, getting stuck with a needle only to find that today is not a good day to get chemo. They go home defeated as if they failed a test only to wait for the next week to go an do it again.  Week after week, while the fight is on, the patient gets tired.

As my friend, Mary, so eloquently put it, Kathleen isn't giving up...she is letting go.  She is finding peace and comfort in what is important...what really matters...her family, friends, animals, her home and her heart and soul.  

I get the honor of seeing this when I show up to a home.   When the battle has been called off because the options are even more difficult, I always sense a feeling of relief from the patient.  They are content to stop being stuck, stop being in the fighting mode and feeling ill constantly.  They are at peace with being at home, with their loves, spending the precious time they have loving and being loved.  If they hurt, we figure out how to help that and if they don't, we support them with the decision and take it a day at a time.  We give them back the control they lost when then diagnosis trampled on them and held them down.  

When I talk about them being in control, I mention that they are now the "boss" and get to call the shots.  If they are hungry for something that was forbidden because of the medication, I tell them to have as much as they like.  Often, a wife will ask if the husband can have a beer or a glass of wine at night.."We used to sit on the deck every night and have a glass of wine after dinner, can we do that now?"  I always respond that they can do whatever that want to and then I wink and tell them they can even sit out on the porch without clothes drinking that wine if the neighbors don't mind!   They always laugh and give each other that look that they have cultivated after many years of togetherness in their story.  

It doesn't seem like such a big deal to a healthy person, but when you have been in the fight of your life and had no control...a glass of wine on the deck like you used to do, is such a comfort to a couple that is counting the time they have together.   "Good time" as I refer to it...when I explain how I can help.  Time that is comfortable, in the place you want to be and with the people you want to be with. That, my friends, is time that is precious.

You see, most folks that have had chemo for many weeks, months and years have gotten used to feeling lousy...tired and weak.  They have fought long and hard and bought time.  I can't say that I wouldn't do that myself.  But, when the options are few and the chemo is tougher, and when the person says enough is enough and stops chemo, I have to say, they usually feel much better.  The nausea goes, the extreme fatigue abates and they can taste food and drink again.  They can live.  If they have pain, they take medication and enough to make it tolerable if not go away.  It's a win-win in a scenario that most folks wish was just a bad dream.

So Kathleen, I wish you plenty of "Good time"...on your porch, with your dear friends and family remembering and feeling how loved and cherished you are and the stellar example for all of us on how to handle life through the good, the bad and the ugly.  There is no right way to "let go"...only your way...

So, as I tell all of my patient's from day one..."I don't think you're going anywhere right now, so what do you want to do?"  

We'll tawk tommorrow,
I love you all,

Saturday, July 26, 2014

Tomorrow is the big day...

Tomorrow morning, bright and early...and I mean early, we will head to the airport and get on a big United Jet headed to Guatemala. Once we get there, we will gather our belongings, the stuff we packed and decided that we couldn't live without for a week, as well as our hammers, work gloves, tool bags, fat pencils and our measuring tapes.  My daughter will meet us at the airport and we will pile into a bus to go to the small town to begin our vacation.

I started doing things like this for vacation in 1999, when my kids were little and I was hanging with the teenagers at church.  They wanted to do something different and I was all in.  My kids couldn't go because the were 7, 5 and Jim stayed home with them.  At that time, what struck me was how hard the work was and how difficult it must have been to live in the conditions that they did.  I came home to my big house and felt terribly guilty.  "Why me and not them...why do I get a big, dry house and they live in cardboard boxes, pallets and bed springs for walls?"  I just got lucky...I guess.

For most of my life after those trips I wondered what I was and am supposed to do.  Am I supposed to sell my house and move to a little one because people don't have houses that are dry in Juarez? Am I supposed to go to nurse practitioner school so I can move down to Nicaragua and take care of a town with my medical knowledge?  Or, do I put my life's work into figuring out water and sanitation for the third world countries?  

In the beginning of my trips, I went to these places thinking they just needed to change.  They needed to do things how we do things in the US with regard to health and they will all be healthier.  In Nicaragua, they need to move their wood burning stoves outside so when they cook, the smoke didn't give the babies asthma.  They need to use birth control and stop having so many babies because they can't afford the ones they have.  In the other countries, they need to stop drinking that filthy water so they don't get sick so much and they feel better.  It was so simple when I started.

Then I went a few more times and grew up a bunch more.  I realized that we are guests in their country, they welcome us and we are there to help.  We are not there to tell them that we have the lock on happiness, health and hygiene and they need to just get going.  It's not so easy to change everything you know and grew up with.

I know in the US, we have a lock on some things.  We have water from our taps that we can drink and we can flush our toilet paper.  We have medication, although sometimes hard to get, and can get it if we really need it.  In other places, if  you or your child needs medicine, you may or may not get it.  But, I would argue that they have a lock on "family."  Generations and generations come to our work site to watch the home being put up...and joking and exuding joy for each other that they are going to have a water tight home.  They carry their babies on them in wraps and those babies don't cry.  They nurse them wherever and whenever that baby is hungry.  Maybe we could both learn from each other.

As I got older, I have come to some pretty deep answers about these things.  I can do what I can do.  I can find a need somewhere, whether it be walking dogs in a dog shelter or flying to a third world country and putting up a house, that I am able to do.  You do what you can do...and maybe a little more.  That's it.   When you get uncomfortable with having so much and watching the suffering around find something and do it.  That's it.  It's sounds so easy, yet is so hard to do it.

So when I land tomorrow in that country, it is not my job to look around and see what "needs" to change and start talking.  My job is to sit back and let them teach me.  If I have been respectful enough to offer advice, and if they want it, sure we will talk but most of the time on these trips, these folks are giving me advice...

Yeah, it's about the house I guess but really it's about the relationships.  It's about being with another human who is very different from you and finding the common ground.  It's about remembering the things we all cherish, such as the love of family and helping provide basic human needs of food, water and shelter. 
It's about basic human connection and being fortunate enough to help another and getting much more than you give in return.  

Oh, and for me...seeing those babies tied to their mommas with big smiles on their faces...that's what it's about for me.  I cannot wait!

We'll tawk tomorrow,
I love you all,

Monday, July 21, 2014

Musings of a hospice nurse...

I attended a death of a patient last week...a younger woman with a quick progression from diagnosis to death.  I say "attended" because that's the fancy hospice term for going to the house, pronouncing the person and calling everyone who needs called.  I always feel like that word is too sterile...too formal.

Anyway, this patient was a fighter and she wasn't going to die.  We did not discuss death, dying or anything to suggest that she was not going to live.  From my perspective, there was no question that she  was going to die and it was coming pretty fast.  But, her plan was to be in the 5% that beat the odds and that was the way I cared for her.  

Then last Monday, as I was caring for her, she sat on the side of the bed and said, "Terry, I think it's time to go."   I shook my head and looked up at her (because of course it seems like when those moments come, I am already on my knees) and she asked me if I understood what she was saying.  I told her I did.  "You are tired of fighting so hard, tired of feeling bad and tired of being in pain.  You're ready to die."   As I was talking, her husband came around the side of the bed and began to tell her it was okay..."I don't want you to go, but I also don't want you to be in so much pain as you have been in the last few days" and then he went on " You are my hero...I've never seen anyone fight as hard as you and if you are's okay to go."  

We settled her into bed, gave her the medication for comfort and walked down the stairs.  We talked about the patient, her strong will, her faith in God and how she had finally come to the place of acceptance.  He wondered if he needed to take her to a hospice facility...or could she stay home?  

I spent the next half hour talking about how he did the hardest care for his wife already.  How she was in pain and he medicated her and how when she needed to be cleaned up, he did that too.  "Now your job" I told him "is to get in bed and hold her and love her until she is gone."

Tuesday came and I called him to check on her.  He said she was awake and talking and that the kids were there and everyone was in the bedroom with her loving her up.  I encouraged him, offered to visit and he declined.  He felt like the family was with him and she was very comfortable...

The Wednesday visit was hard as she had declined more and was less responsive but very comfortable.  It was all it could be in the worst situation possible...losing a wife and mother so quickly and so young.

The call came Thursday that she was "gone".  I arrived at the house to find the family in bed with her, comforting each other and talking about how peaceful she was and how the end was "good."  They were in tears for the loss and tears for the feeling of relief that she was not in pain anymore.  

Oh good Lord, it was so sad.   When I began my job...I put my stethescope to her chest, put my head down and began to choke up...I was so happy that she was out of pain and she was at home with her family, but so sad that she was gone.  I looked up at the family watching me, embarrased that I was so emotional from the beginning and nodded yes.  She indeed had crossed over...was gone...had passed away.  I looked at her face and it was if she had a little smile and asked the family what they thought.  They agreed and took solice in her expression.

I learned a lot from this family and how they handled adversity.  The patient's husband talked about how he was told by so many people that she had to go to a facility and how she had to admit she was dying.  I, at times, felt like it would have been better to talk about it.  He always said no and politely declined.  It wasn't that he didn't know or didn't want to face it...he was honoring her wishes to fight until she decided she didn't want to fight anymore.  He decided that he was not going to have any regrets and so he went about his last days with her that way.  He cared for her with grace and dignity and kindness and love...and when she said she was done, he helped her through that time in the same manner.

The next day, Friday, I walked around in a fog but wanted to celebrate life, so I invited some friends over.  As I sat on my patio sipping wine, I thought about my patient's husband and the heaviness of his heart...and uttered a silent prayer.  Me, I poured myself another glass of wine and listened to the laughing and banter around my table.

Once again, the lesson is...Life is short, hard and wonderful at the same time.  I only hope and pray that I have less regrets and more fond memories and I continue to live.  I wish that for all of you as well!

We'll tawk tomorrow,
I love you all,

Saturday, July 12, 2014

LIfe is hard...

You know what?  Life is so hard!

I told my husband that I was going to delete my facebook because it seemed like everyone was having an awesome time with a perfect life and I was dealing with death, struggle and not looking so good in pictures.

It's interesting because I know I will put up a good picture but one that I have the old lady neck and look like a cow...I forget that picture even though it might have been the best night of my life.  I am so superficial...

Anyway, it has been a week with intensity and sadness and exaustion and goodness and kindness and witnessed strength in the most difficult of situations.  I got to see people much stronger than I life to the fullest.  

I guess I need to take some of my own medicine.  As I used to say when I was a camp nurse... "buck up" and "rub some dirt in'll be fine."

But I have to say...Life is hard...for everyone at one time or another.  I love the t-shirts that talk about life being good...and it is is also hard!

So love the good times with abandon because everyone will have hard times and when that happens...the person you think you are will have the test of a lifetime.

As a husband of one of my dying patients told me this week..." I don't want to have regrets.  I want to care for her and so I don't have to worry that I didn't do a good job...didn't do everything I could do to keep her comfortable and make her know that she is loved."  I told him, " You are doing all that , my are doing an amazing job."

May you have someone on this earth that loves you that this hard life...

We'll tawk tomorrow,
I love you all,

Friday, July 4, 2014

The Dancing Queen...

Being a nurse doesn't usually require much dancing.  As I've said before, I do spend a fair amount of time on my knees but   Yesterday, was different.  I got to dance.  Not only did I get to dance once but I got to dance twice with handsome men. 

I arrived at my patient's house and noticed the front door was open and the light was on in the middle of the day.  I knocked and walked in and noticed that things were in dissarray.  "Helloooo, it's me" I said, "Terry the nurse."  My patient had a scowl on his face and wondered what I was doing there.  He was mad.  I reminded him that I always come on Thursdays to check on him and look at his med minder...and to make sure he was okay.  He still wasn't satisfied.  We spent time talking about what was bothering him, about his sleeping, his aches and pains and if he was eating.  He was doing pretty good but still just mad.  Finally, I asked him to get out of his chair, grabbed him by the waist and began to dance with him around his kitchen.  He quickly took the lead and was stronger and more relaxed than he was since I walked in the door.  "The man is supposed to lead, don't you know that" he told me and laughed.  I kissed him on the cheek and escorted him back to his chair.  I took his vital signs, listened the his heart and lungs and visited for a little bit longer. Instead of being mad, he began to tell me about his  late wife and how they danced all the time and what a good dancer she was.  

I got in the car and laughed...wondering what made me get him out of that chair to dance.  I turned the radio up to one of my favorite songs and headed to my next patient.

This gentleman has a neurological disease that is slowly robbing him of his movement, language and swallow.  I always have to stop a minute and breath before I walk through the door to his room.  Today, I was interrupting him and his wife getting ready to go to the movies.  "I forgot you were coming today" she said "but I am so glad because you can help me get him ready to go."   I told her I would love to because I had only seen him in bed or in the reclining chair.  We got him dressed and prepared for the transfer with the lift but then she asked him if he wanted to try to stand up.  He slowly replied that he did.  Thinking about how she cares for him, I asked her if I could help.  She showed me where to put my legs and said,  "Daddy, put your arms around Terry and stand up and dance." He stood up and wobbled, but slowly I pulled him closer and we danced into the wheelchair.  Before I could gather myself, his wife combed his hair, straightened his clothes and put a little cologne on him.  He looked fantastic, very handsome and smelled awesome.  I told him he smelled better than my husband and he dances better too!   We rolled him to the car and transferred him in, buckled him up and they left for the movies.  

He was my last patient of the day...and I was feeling thankful.  I though about my paperwork, the charting to be done and the time it would take...and then I thought about how I got to dance.  

As hard as it is to do this work, and lately I haven't been as strong as I want to be...I get such special time with people in their homes on their terms.  And some days...I even get to dance!

We'll tawk tomorrow,
I love you all,