My hospice inspiration...

It was a week before Christmas and I was in fifth grade.

I knew that some things had seemed off in the previous week: my Dad took two days off work, my Mom was staying in her nightgown all day, and when my beloved grandparents arrived for Christmas, there was a damper on the usual joy.  

Two nights after my grandparents had arrived from Arizona, we were all called into the family room.  My mom glumly told my sister (13) and me (10) that she had cancer.  The word alone set us back. I didn't know to ask anything then. What I knew was that everyone in that room (many of whom I'd never seen cry before) was sure she was going to die. The when and in what way were uncertain but there was not one single drop of hope in that room. It. was. devastating.

In other blogs, you will learn more about my Mom's cancer journey and that of so many of my other family members.  What is pertinent to this topic is that my sweet grandparents gave up their lives in Arizona and stayed with us until Mom was fully "out of the woods".  

My grandfather, a thoughtful man, patiently watched "General Hospital" with my sister and me during that time. He rug hooked and ran errands and watched a family decimated by facing what we thought,  at the time, was a terminal diagnosis.

My Mom is alive and well.  Her recovery was nothing short of miraculous and still indescribable to this day. After Sloan Kettering told her to "get her affairs in order", healing inexplicably began.  

But my dear "Pop pop" returned to Arizona with an itch. How would one help these families in distress?

Ironically, this was 1983. The very same year Ronald Reagan made hospice care part of the Medicare benefit. It made hospice "legit". It was just what my grandfather was thinking about.

He returned to Arizona and volunteered for the very small (at that time) (very big now) Hospice of the Sun Valley. Many have said Arizona (and Florida) is God's waiting room. Pop pop went on to have beautiful experiences with terminally ill patients and their families.  He grew into the role of Volunteer coordinator and a community educator about the benefit of hospice care.

When I went to nursing school, I had no notion of working in hospice care.  I was going to work in oncology. My life experience made that a certainty.  Well, oncology proved depressing. The cases about which I felt the best, were those that went to hospice. When the hospice nurse came, there was an undeniable presentation of hope - albeit for different things- and I wanted to be a part of that.

As a Certified Hospice and  Palliative Care Nurse, it pleases me to no end to think that I am honoring my grandfather's legacy. His involvement in hospice was at the grass roots level and now it is amazing for me to attend conferences that bring forward and support the enormous hospice movement in this country.

What a gift I have to work in an industry that could have supported my family so many years ago.

Letter to my friends...

I chose nursing for the utility of the career. I came into hospice for reasons already described. I have come to a time in my life when my knowledge and experience have become useful to so many of my friends with aging parents. I submit this open letter, whether I know you or not, about the journey in front of you.

Dear Friend:

Today is an awful day for you. The word hospice has been uttered and you are seeking my - or someone like me's- guidance. Sadly, but hopefully, it is for your aging parent. Horrifically, it might be for your spouse and inconceivably, it could be about your child. Rest assured you have entered a place of compassion and understanding.  After all the hospital uncertainty ("does the right hand know what the left hand is doing??") that you have endured, the mania is over.  Hospice is a warm blanket, much like Charles Schultz's love, that wraps us all together and makes this experience less awful.

Hopefully, you don't feel foolish, but you might. You've never done this before. Hospice is used to that. The irony of the fact that everyone dies but no one is ready for it is something to which we are very accustomed.

This is what we do. We understand deeply this phase of life and all the dynamics that go with it. It can bring out the best and the worst in some families. People die as they lived, so if your Mom or Dad was stubborn in life, you can count on them to be stubborn until the end.  Any quality hospice program, once the word has been spoken, should dispatch and informed, credible, compassionate clinician that will take time to demystify the process.  If you don't get that, cry Mercy!

Best case scenario:  a hospice clinician that instills trust comes to meet with you.  Ask everything. Twice. Take your time. Especially if you are contemplating or preparing to bring your loved one home, which is most likely, understand completely what hospice will and won't provide.

Let me provide a little surface guidance on that topic. Hospice, for all the many wonderful things it will do, is not going to move in. Hospice will provide frequent visits from the members of the interdisciplinary team (RN, MSW, CNA, chaplain, volunteer). However, if you and your family are not prepared to be at your loved one's bedside 24/7 (depending on their level of dependence), you will need to hire private duty care. Based on your part of the country, you can count on approximately $17/hour.  

Having said this, I am hopeful that your loved one needing hospice, isn't entirely dependent at the time you elected hospice.  Everyone tries to avoid  hospice, but an earlier election provides for a better plan of care. We all know you don't want to "give up" on your loved one, but hospice is not about giving up. It is about finding hope in different places. (Originally said by Debbie Lott, RN). ( A larger topic for future blogs).

What you, friend, need to understand as you bring your loved one home is the following: Hospice is going to take care of everything to keep your loved one comfortable. What that means is all the medicine that he/she needs to be comfortable and is related to his/ her terminal disease*, supplies like diapers/ chux pads, dressing changes, durable medical equipment like a hospital bed, bedside commode, oxygen (for comfort without qualifying levels) and walkers/ wheelchairs.

All this, all this, all this, comes down to this: I know you or I don't, but YOU can do this. This is hard. Babies are born in hospitals, so we think people should die in hospitals. They shouldn't. That's not what hospitals are meant to provide.  

When you're loved one is dying, and all have agreed that allowing nature to take this path is the most loving and compassion plan of action, bring your loved one home if at all possible. Dying is natural.  Our intensely medical society has presented death as a medical failure, but the truth is, death is a part of life. We cannot change that. What we CAN change is the death experience.  

I have attended many deaths, in hospitals and home alike. Death is always a shock, even when loved ones state preparedness. Death can be peaceful. Death can be beautiful.  As a questioning Catholic working for a Jewish hospice, death is undeniably spiritual.  

Dear friend, I acknowledge your fear. Grief will always be present. But a death at home that honors a patient's wishes, cared for by hospice, indisputably provides for a better bereavment.

Trust me.