Why I Love Hospice: Lessons about living learned through death and dying

I finished up a season of working as a home care and hospice nurse with Lakewood Health System about three weeks ago.  It was bittersweet to be done.  I truly enjoyed it, especially hospice, but am at a point where I know I need a season of resting and taking a break from hospice.  I worked with an incredible team of nurses, an amazing hospice medical director, chaplain, social worker, pharmacist, massage therapist, home health aides, volunteers and office staff.  I have been doing a lot of reflecting the last few weeks-camping alone and driving to Kansas gives you the time to do that kind of thing.  

People frequently ask how I could work as a hospice nurse.  I am often asked, "Isn't it depressing?" or "You always know the outcome and it's not good."  What people often don't see or understand about hospice is that it's not focused completely on death and dying.  While hospice is end of life care and patients have a terminal diagnosis, the goal of hospice is to help patients LIVE and to support their families during this journey.  Hospice isn't care for when you are on your death bed.  Generally, the patients and families that receive the greatest benefit from hospice care are the ones we started working with weeks and months before the patient actually dies.  More time allows the hospice team to build a relationship with the patient and family and see what is important to them before that person dies or what is most helpful to him/her and the family.  Time and time again, families would comment on wishing they would've started hospice sooner.  But it's hard to shift your brain from focusing on curing and treating a disease to comfort care and symptom management.  Meanwhile, letting strangers come in to your home and get real personal real fast and talk about your mom/dad/son/daughter/brother/sister/friend dying.  It's truly an honor to experience such a thing with people.  Excuse me while I step off my hospice soap box now...:)  

So back to my reflecting...I was thinking about things I've learned during my time as a home care and hospice nurse and thought I would blog about a few.  Someday, I will reread these postings and it will remind me of this season and maybe encourage someone else in their story or journey.

1. Life is too short.  Watching people face death on a regular basis is a reminder of how temporary this life is.  There is never enough time to do everything you want.  We all have these things that we will do when "life slows down" or "fill in the blank (finish college/start a career/get married/have kids/kids leave/have grandkids/etc)."  Newsflash: Life doesn't slow down.  Ever.  We make time for the things we care about.  Life happens whether we like it or not.  I had these things I wanted to do, but it was never the right time or it wasn't convenient.  But neither is death.  So I wrote my bucket list.  Ride in a hot air balloon-check.  I went sky-diving.  And I did a triathlon.  Run a 10k-check.  Why wait?  And not just for the big stuff, but the little things too.  That friend that you are going to get together with...or at least you say that every time you run into each other?  Pick a date and get together.  Or better yet, just drop in.  I read an article recently that drop in visits are becoming a lost art.  Let's make a comeback...:)

2. Everybody has a story.  Everybody.  We are so quick to judge, assume and take offense from others.  Especially those who don't look/think/act like we do.  Or maybe it's just me?  That whole, "Be kind to everyone you meet. They are fighting a battle you know nothing about" phrase.    We've all been through sucky and messy times and know the small, simple things can make your day.  They can also break your day too.  What if when we were going about our busy days, we took a little more time to pay attention to the people we cross paths with?  What if when we greeted someone with "How are you?" we actually took the time to listen?  I confess I often do the, "Hi! How are you?"...."Good!  How are you?"...."Good."....cue going about my day that is a disaster and I'm not good at all, but heaven forbid I actually tell you that.  I'm not saying we have to air our dirty laundry, but this was one thing I loved about being a hospice nurse.  I got to hear some of the best stories ever.  Stories about growing up and childhood favorites, family vacations, how husbands and wives met (some of my favorites!), how marriages survived many years, hard ships and celebrations, family traditions, quirky traits and preferences and anything else you can think of!  Which brings me to number three...

3. It's all about people and relationships.  I have yet to hear someone on their death bed talk about how they are so happy they worked a bajillion hours at their lucrative job, had this immaculate mansion, luxurious car or any material items.  None of that matters when you are dying.  It's all about the people you love and have made memories with.  It's the legacy you leave with those you love.  Which ties into number four...

4. We all just want to be loved.  It's really that simple.  I confess that when I started in home care and hospice, there were houses I went to that...well, you could say cleanliness definitely wasn't next to godliness in their opinion!  I was judgmental and couldn't believe that people lived in such conditions.  Some of the sweetest, most loving families I have met have lived in what most of us would consider less than ideal conditions.  Their house may not have been neat and clean, but their hearts were pure and clean, full of love, care and compassion.  It was an eye opener for me that once my selfish, critical eyes could get past the materialistic, surfacy things, I saw the same exact thing at every house-an individual with a story who wants to be loved, cared for and to know their life mattered.    

5. This last one is the main reason why I was able to work as a hospice nurse.  I needed to remind myself of this often or hospice is a hopeless and depressing job.  Just like the rest of the world and life in general!  Final lesson (for this post anyhow!): My hope is not in this world or life.  My hope is secure in Jesus and the promise that some day, because of His grace, mercy and sacrifice, I will forever live where there will be no death, cancer, disease, sickness, sorrow, etc, etc, etc.  Our hospice medical director shared this quote by Richard Rohr at our remembrance night last December, "We must learn how to walk through the stages of dying. We have to grieve over lost friends, relatives, and loves. Death cannot be dealt with through quick answers, religious platitudes, or a stiff upper lip. Dying must be allowed to happen over time, in predictable and necessary stages, both in those who die graciously and in those who love them. Grief, believe it or not, is a liminal space where God can fill the tragic gap with something new and totally unexpected. Yet the process cannot be rushed. I would say that being present at live birth and conscious death are probably the supreme catechism classes and Sunday schools that we have available to humanity. And yet we have turned them largely into medical events instead of the inherently spiritual events that they are."  

I have been incredibly blessed by the patients and families I have worked with the last few years.  They have taught me so much about life, loving and living.  A patient's husband told me he believes we never cross someone's path on accident or by coincidence.  There is always a reason.  We may not always know or see it right away, but there is purpose in each interaction, relationship and circumstance.  I second that.

My brother is God

So not actually, but attention grabber, huh?  :)  I watched this little scenario play out and wanted to blog about it so I can come back to this as a reminder to myself.  Nothing earth shattering, but simply needed this reminder for my anxious heart.  I'm hoping it will encourage you too and remind you how much you are loved and cared for.  Always.

I was at a cabin for a few days with my family.  My niece, Vivian, who is three years old REFUSED to touch the sand.  It's not that she doesn't like water.  She's done swimming lessons since she was like six months old.  I've been to a few of her lessons and she has put her head under (voluntarily!), jumped off the ledge, rocked her back float-she loves it all!  But the lake (or the "river" as she kept calling it) was different from the pool she normally swims in.  The pool at swimming lessons has different water.  It's inside.  And has no sand.  We tried to convince, persuade and bribe her, but she rejected our offers.  Who wouldn't touch sand for almost three bucks?!  Vivian.  That's who. 

My brother held her and was dangling her feet in the water, swinging her back and forth.  She laughed and giggled, but as soon as he would start to lower her into the water, she would scream.  You would think if she would just get her feet low enough and "accidentally" hit the sand, she would be fine.  She would realize how nice it feels on her little feet.  There's no rocks.  No seaweed.  Nothing.  But it's the unknown.  It's different.  As she was screaming and pulling her legs to her chest so she wouldn't have to touch that horrific sand, she began to cry.  My brother tried to calm her.  Tried is the key word.  And then he said something along the lines of "Vivian, the sand isn't bad.  TRUST ME!  It's not going to hurt you.  I promise.  Do you think I would ask you to touch it or let you be in here if it was bad for you?"  As he brought her up and held her tense, scared little body, he assured her, "I got you.  I won't let you go."  She believed it.  She relaxed and knew that her daddy meant what he said. 

I'm usually not one to make things sound so dramatic, but as I watched Jesse and Vivian, I couldn't help but think about the love a father has for his child.  That still, small voice gently reminded me that this is a tangible, visual example of a sliver of God's love for me (and YOU!).

I often find myself discontent and feel like my life should be more put together (whatever that means).  I'm a control freak and struggle with needing to be independent and self-sufficient and hate relying on anyone, sometimes God included.  I know in my head that He is good and faithful and He has never let me down (and all those other lovely promises in the Bible), but WHAT IF this time is different?  (Silly, I know.)  But insert my attempt to control and take care of things.  I just want a map of my future and where I should be and what I should be doing.  As I watched Jesse and Vivian, it was like God said, "Jenny, it won't hurt you.  I promise!  TRUST ME!  Would I call you to go somewhere or do something that isn't for your good and my glory?  I got you.  I won't let you go."  He does this.  Again and again.  And again and again.  And unlike Viv, I still question it.  What a reminder of childlike faith.  In her mind, her daddy said it-so it's truth.  No ifs, ands or buts.  No questions.  I know my Father means what He says, but my human nature gets in the way so quickly.  Father, help my unbelief.  I am thankful that God continues to remind me of these Truths.  Again and again.  And again and again.  You're welcome for the reminder.  :)

"Celebrating" diabetes

Twenty years ago today, my life was turned upside down.  As was my parents and siblings.  My mom talks about how she thought I was going to die the night they brought me into the ER.  I don't remember a lot of it at first, other than waking up in the hospital and being poked again and again.  And again and again.  Forcing my family to sit through hours of education day after day, injecting oranges and pricking their own fingers to have an idea of what I was experiencing.  I hated it.

People often say, "I don't know how you do it...I could never do it.  I hate shots/needles/blood/etc."  When it comes down to being a matter of life and death, the thing you hate doesn't seem as bad.  The thing I hate most is that diabetes affects everything and everything affects diabetes.  I blame my control freak nature on diabetes.  I have always had to be ready for what could or might happen and couldn't rely on anyone else to know when I'm high or low or something isn't right.  I vividly remember sitting at an appointment, reading a book oblivious to anything while Dr. Lamberty told my mom what we (she) needed to know.  He called me out and told me to pay attention and that this was my disease and I needed to take care of it.  Welcome independence and self-sufficiency...

And then there are nurses...  Nurses are a big deal.  I remember Mary Jorgenson being one of my nurses and how kind and gentle she was.  She probably has no idea who I am, but I remember her.  I still remember another nurse who was not kind and gentle and was sassy at my dad when they moved me out of ICU-I'll leave her name out.  There was a male nurse, which was almost unheard of back then, I think his name was Leroy...he was my favorite.  He hid in the closet one night and tried to scare my visitors.  Such simple things, but for a scared nine-year old, they were huge.  I have met so many people the last twenty years I would not have met had it not been for my diabetes.  Camp Needlepoint in Hudson, WI, was like heaven growing up.  It was the two weeks of summer I felt normal.  It gave me a confidence I didn't know I was missing and taught me that diabetes doesn't have to restrict me from doing anything.  If you know a kid with diabetes, send them to Camp Needlepoint or any diabetes camp-it will change their life.

Being exposed to doctors, nurses, dietitians and nurse educators showed me the impact (good and bad) one person can have on an individual and family's life.  I don't think I would've considered the nursing field without my diabetes.  I often joke that that's why I got diabetes-to direct me into nursing.  And keep me semi-responsible.  Many days, I get these crazy ideas like joining the circus or hitchhiking across the country.  And then I remember that I need health insurance to help pay for these stinking drugs and supplies.  So I keep working...

I never dreamed I would feel so loved and blessed and that thinking about having diabetes for twenty years would be such a good day.  I'm so thankful for my family, friends and co-workers who gave gifts, sent messages, cards, texts and reminded me today how lucky I am to be alive!  I think about the good things God has done through a horrible circumstance and am reminded of His goodness and provision.  He will take care of me-whether it's financially, insurance, doctors or the strength and energy to get through the day, He continues to show me that He is enough.