It is an honor and a privilege to serve patients and families facing life-limiting illnesses. End-of-life experiences are rich in emotion and spirituality. Serving in this type of environment allows us to be present during a time that is sacred and offers us access to peoples lives at at time of intense vulnerability. Each story is unique and special. This is one of my favorites.
When I was very young I had a newspaper route. I hated it. Looking back I can see the importance of the lessons learned through this responsibility and I probably even thank my parents for it, however, as a child you rarely see past the end of your nose. At the time I thought it was cruel and inhumane of my folks to make me get up at 5:00 am, regardless of the weather, stuff newspapers, stack them on to a cart, and wheel them around my entire neighborhood. Oh, and we didn't throw them on the driveway like they do nowadays. We walked them up to the door and placed them securely between the storm and front door of each neighbor's home. Perhaps that's why I am such a stickler for exceptional customer service today. I digress...
What I did really love about the newspaper route was the "collecting". At the end of each month we would go door to door and collect money for the papers we delivered. I enjoyed it because it offered the opportunity to get to know the people that we served. My older customers would ask me inside and serve up cookies, milk and other treats. As I would nibble on the tasty (and sometimes not so tasty) snacks, they would tell me stories about their lives, their children, and their grandchildren.
A couple I was particularly fond of was the Carmichael's. I had to make sure I had plenty of time when I went collecting to their house because I knew I would be there for at least an hour. The Carmichael's lived on the corner and Mr. & Mrs. Carmichel did everything together. Mrs. Carmichael didn't drive so Mr. Carmichael took her everywhere she wanted to go. They didn't have any children but I remember being struck by how in love they seemed to me. At the time I didn't know a thing about love but it touched me the way he would dote on her. He would anticipate her needs, tease her and look at her with an affection that I wasn't used to seeing in people that age. Whatever they had I knew I wanted when I grew up. Mr. & Mrs. Carmichael became like adopted grandparents. They came to my Kindergarten play (yes, I delivered newspapers that young! Thanks, Mom & Dad!) and took me out to lunch afterwards, things like that.
I remember the day that Mrs. Carmichael became very ill. I don't remember exactly how old I was but I believe I was around 12 years old. I would go to check on Mr. Carmichael when he would come home from the hospital. He could barely look at me and would tell me he "couldn't talk right now" and I could tell he had been crying. Mrs. Carmichael died shortly thereafter and when she died it took all of the life out of her husband. He would barely come out of the house. His car would be parked out front for days. In no time, I got the news that Mr. Carmichael had died too. To this day I believe he died of a broken heart. In fact, I know it to be so.
A love like that is rare. Still, I have had the honor to witness several stories like that of the Carmichaels' and I think of them each time. There is something so moving to see older couples holding hands, kissing, hugging and smiling at each other. It makes you wonder about all that they have been through and how true a commitment it is to stay married for so many years and be that happy and in love. Call me crazy, but to love someone so much that you physically, emotionally and spiritually lose the will to live without them is incredibly romantic.
Just thought I'd share.
Saturday, March 31, 2012
Thursday, March 29, 2012
Departures
My Godmother, aka "Apple Suzie" recommended I watch a Japanese movie called Departures. It came in the mail today via Netflix. I have to say it was the absolute best movie movie I have seen in forever. Beautiful music, excellent acting, and my favorite subject matter - death. I keep trying to tell people that there is so much beauty in death and now there is a movie to prove it. So, go out and rent this movie, you will be deeply moved.
There were two things that struck me to my core in watching this film. First was an old man who had been working at a crematory all his life. He told a man who was there saying goodbye to his mother who was about to be cremated that he liked to think of his job as a "gatekeeper". He felt like he was escorting the dead by opening up the gate from this life into the next. I thought that was incredible.
Whether you work in death and dying or not, as we get older the number of people we have seen go through the dying processes grows. For most people I would say the experience is something they didn't look forward to nor would they want to go back and do it again. But I love the idea of the "gatekeeper" and it struck a chord with me because hospice staff are absolutely helping families escort their loved ones through the gate from this life into the next. Our hope is to provide a dignified and graceful entrance through that gate. Wouldn't it be wonderful if we could all see it that way?
The second thing I loved the most about this movie was identifying with the main character. He was a cellist and his orchestra was dissolved. He didn't feel like he was a very good player and he and his wife moved back to his home town where he "by fate" found a job posted in the newspaper that, unbeknownst to him, turned out to be a position as one who prepares dead bodies for placement in a casket. These professionals go to where the person has died and provide post mortem care, however, it is done in this incredible ceremonious way and includes bathing and makeup and dressing. He has no idea and is shocked when he hears about what he is applying for but the owner convinces him it's his fate. Turns out that he falls in love with the profession and is really good at it. When his estranged father dies, he is summoned by the authorities to his death and performs the ceremony for his father. It's this amazing moment of grief and bereavement, words cannot express how moving.
I identify with this not only from my background as a musician, but also because I never would have expected that death and dying would be my thing. I believe that God moved me toward it so that I could be there for my family when my Mom-mom died particularly but then also for the loss and illnesses of our other family and loved ones.
It's incredibly late and I'm sleepy but I just had to share about this film. Please, please, please go out and rent it. You will be moved, you will be entertained, and you will be convinced of the beauty in death.
There were two things that struck me to my core in watching this film. First was an old man who had been working at a crematory all his life. He told a man who was there saying goodbye to his mother who was about to be cremated that he liked to think of his job as a "gatekeeper". He felt like he was escorting the dead by opening up the gate from this life into the next. I thought that was incredible.
Whether you work in death and dying or not, as we get older the number of people we have seen go through the dying processes grows. For most people I would say the experience is something they didn't look forward to nor would they want to go back and do it again. But I love the idea of the "gatekeeper" and it struck a chord with me because hospice staff are absolutely helping families escort their loved ones through the gate from this life into the next. Our hope is to provide a dignified and graceful entrance through that gate. Wouldn't it be wonderful if we could all see it that way?
The second thing I loved the most about this movie was identifying with the main character. He was a cellist and his orchestra was dissolved. He didn't feel like he was a very good player and he and his wife moved back to his home town where he "by fate" found a job posted in the newspaper that, unbeknownst to him, turned out to be a position as one who prepares dead bodies for placement in a casket. These professionals go to where the person has died and provide post mortem care, however, it is done in this incredible ceremonious way and includes bathing and makeup and dressing. He has no idea and is shocked when he hears about what he is applying for but the owner convinces him it's his fate. Turns out that he falls in love with the profession and is really good at it. When his estranged father dies, he is summoned by the authorities to his death and performs the ceremony for his father. It's this amazing moment of grief and bereavement, words cannot express how moving.
I identify with this not only from my background as a musician, but also because I never would have expected that death and dying would be my thing. I believe that God moved me toward it so that I could be there for my family when my Mom-mom died particularly but then also for the loss and illnesses of our other family and loved ones.
It's incredibly late and I'm sleepy but I just had to share about this film. Please, please, please go out and rent it. You will be moved, you will be entertained, and you will be convinced of the beauty in death.
Tuesday, March 27, 2012
Victory!!!
It's always important to celebrate the victories, even the small ones. Today I am celebrating! You see, I'm the new kid on the block, in a very small town. Outsiders are not always welcome. But I am also, as people may describe me, "tenacious as a bulldog". I refuse to give up, especially when it comes to things I value - LOVE, LIFE, & HOSPICE.
Today I hit a milestone with a hospitalist. A hospitalist is a physician that works in a hospital setting, taking care of patients who are admitted to the hospital, and overseeing their care during their stay. Our hospice agency receives referrals from these physicians when they plan for patient discharge. If a patient is eligible for hospice services our hope is that they will be referred to us so that we can help the patients and families safely transition from the hospital to home with hospice. It takes time to develop relationships and trust with these physicians. They are extremely busy and I, after all, am not a peer.
I have been working hard to educate these hospitalists on hospice services, eligibility, and the proper time to refer. I have also been working diligently to get them to utilize my experience and training in end-of-life care.
Today I was working with a patient and family who were planning for discharge and I had a recommendation that I felt strongly needed consideration to afford a safe and comfortable transfer. I called the physician to offer this recommendation and was initially met with resistance. Instead of giving up, I went to find the hospitalist to make my case. He wasn't completely thrilled, BUT, he took my recommendation and agreed to it. HALLELUJAH!
It takes time and patience to earn the respect of anyone. When you are in a position of lower authority it takes even longer. But if you truly believe in yourself and you hold true to your values and fight for what you believe in, it will pay off in the end. It may take longer than you anticipated and you will hit many a brick wall. I encourage you to chip away at that wall one piece at a time and soon you will remove enough bricks that you can crawl through and reach what you so longed for on the other side.
Today I hit a milestone with a hospitalist. A hospitalist is a physician that works in a hospital setting, taking care of patients who are admitted to the hospital, and overseeing their care during their stay. Our hospice agency receives referrals from these physicians when they plan for patient discharge. If a patient is eligible for hospice services our hope is that they will be referred to us so that we can help the patients and families safely transition from the hospital to home with hospice. It takes time to develop relationships and trust with these physicians. They are extremely busy and I, after all, am not a peer.
I have been working hard to educate these hospitalists on hospice services, eligibility, and the proper time to refer. I have also been working diligently to get them to utilize my experience and training in end-of-life care.
Today I was working with a patient and family who were planning for discharge and I had a recommendation that I felt strongly needed consideration to afford a safe and comfortable transfer. I called the physician to offer this recommendation and was initially met with resistance. Instead of giving up, I went to find the hospitalist to make my case. He wasn't completely thrilled, BUT, he took my recommendation and agreed to it. HALLELUJAH!
It takes time and patience to earn the respect of anyone. When you are in a position of lower authority it takes even longer. But if you truly believe in yourself and you hold true to your values and fight for what you believe in, it will pay off in the end. It may take longer than you anticipated and you will hit many a brick wall. I encourage you to chip away at that wall one piece at a time and soon you will remove enough bricks that you can crawl through and reach what you so longed for on the other side.
Monday, March 26, 2012
What is hospice?
I love to talk about hospice. In particular, I want everyone to know about hospice. There are many myths floating around, many misconceptions so to speak. I'll do another blog about those myths in the future but first I want to give everyone a basic understanding about the hospice benefit.
Who pays for hospice?
When I give informational visits to patients and families considering hospice services the very first thing I want them to know is that Medicare and Medicaid cover hospice services 100%. Most private insurances also provide a hospice benefit. Reputable hospice agencies verify insurance benefits before admitting patients to hospice so that patients and families will know their exact coverage and any out-of-pocket expenses, if any, they can expect. There are also many non-profit hospice agencies out there that will not refuse services to anyone eligible for hospice, regardless of their ability to pay. SO, if hospice is right for you or your loved one, please do not hesitate to consider hospice solely based on the fear that you cannot afford it.
Who is eligible for hospice?
Patients eligible for hospice have a life expectancy of 6 months or less if the disease runs its natural course and are focused on quality of life, or comfort, vs. curative treatment.
What is covered under the hospice benefit?
Hospice is an interdisciplinary approach to care. Hospice manages the physical, social, psychosocial, and spiritual needs of patients and families. The patient and family together are considered the unit of care. The interdisciplinary team, therefore, consists of: the patient, family, caregivers, nurses, social workers, hospice aides, chaplains, and physicians. The number of visits the various team members make to patients and families on a weekly basis are not limited. They are based on the specific needs of patients and families. Hospice also provides medications, supplies, and medical equipment related to the hospice diagnosis. Bereavement services and volunteers services are also an important part of the care we provide. Oh, and did I mention the education component? So many families are willing and able to care for their loved ones but they are uncomfortable because they are uncertain what to do and how to do it. Hospice provides the guidance and education needed so that families can do what they want to do - care for the person they love. Hospice nurses are on call 24/7 to assist patients and their caregivers. Hospice medical directors can also make house calls on an as needed basis. All of this is coordinated by hospice and covered under your hospice benefit!! Is that not awesome???
Where is hospice care provided?
Patients can receive hospice care in their private residences, nursing homes, independent living facilities, assisted living facilities and, in some cases, residential hospice facilities. There are different levels of hospice care. The majority of hospice care is provided where the patient lives, however, some patients require short term inpatient care at a hospice inpatient facility or contracted hospital for acute symptom management needs or for respite care related to caregiver breakdown.
What happens when my loved one dies?
One of my favorite parts of hospice care is being there for families when the patient dies. Without hospice this can be a really unnerving experience. With hospice, fears are calmed. When a patient who has hospice services dies, the family or caregiver calls hospice any time of day or night and a nurse comes out to the place of residence and pronounces death. The nurse then provides postmortem care, calls the funeral home of the family's choice and waits with the family for the body to be received. Hospice remains with the family to comfort them. No whistles or sirens or police or fire engines necessary, just peace and comfort.
So, that's just the nuts and bolts. Thought it made sense to lay out the basics for anyone who may never have experienced hospice in the past. Many people have never had a family member or friend who has had hospice. The above is the very least you can expect. There is so much more!!!
If anyone has any specific questions or topics they'd like for me to talk about I'd be MORE than happy to oblige.
More to follow.....
Sunday, March 25, 2012
Death & dying
Let's just get those words out there - death and dying. That's what I'm here to talk about. Perhaps if they are used enough it will help to desensitize them. If I could have any supernatural power it would be that I could magically change the feelings that are evoked when these words are spoken. I wish planning for death and dying would spark the same interest as planning for a wedding or a shower for a new born baby. Honestly though, I get that this expectation may be unrealistic and that "Rome wasn't built in a day". Still, I feel like my purpose in this life, my vocation, is not only to care for dying patients and their families but to change the perceptions our country has on death and dying.
I am here to tell you that we only have one life to live, therefore, only one opportunity to die. There is so much beauty in the dying processes. Imagine what it would be like if you spent the same amount of time planning for your death as you did planning for your wedding. Think of all the places you would go, the people you would see, the things you would say, and the joy you would experience.
What I don't understand is that everyone knows that we are going to die one day. This is not secret. Talking about death and dying doesn't make it come any sooner. It simply affects the manner in which we do. I don't know about you but, if given the opportunity, I want to have an amazing death. I want to be surrounded by friends and family. I want quality of life to always be my focus. If I am faced with a life limiting illness and treatment can no longer offer cure, I don't want to waste time on measures that prolong life but sacrifice quality. I want the opportunity to review my life accomplishments, prepare my mind, body and spirit for life eternal, and celebrate the life that God blessed me with here on earth. I want to lay on the beach and feel the sun on my face. I want to snuggle with my dogs and make love to my husband. I want to eat my favorite foods, drink wine, and laugh out loud. I want to tell my friends and family that I love them over and over and over again.
I challenge anyone reading this blog to consider what you would do if you were faced with a life limiting illness that was not curable. How would you want to live the rest of your life? What does quality of life mean to you? With whom have you shared the answers to these questions?
I am here to tell you that we only have one life to live, therefore, only one opportunity to die. There is so much beauty in the dying processes. Imagine what it would be like if you spent the same amount of time planning for your death as you did planning for your wedding. Think of all the places you would go, the people you would see, the things you would say, and the joy you would experience.
What I don't understand is that everyone knows that we are going to die one day. This is not secret. Talking about death and dying doesn't make it come any sooner. It simply affects the manner in which we do. I don't know about you but, if given the opportunity, I want to have an amazing death. I want to be surrounded by friends and family. I want quality of life to always be my focus. If I am faced with a life limiting illness and treatment can no longer offer cure, I don't want to waste time on measures that prolong life but sacrifice quality. I want the opportunity to review my life accomplishments, prepare my mind, body and spirit for life eternal, and celebrate the life that God blessed me with here on earth. I want to lay on the beach and feel the sun on my face. I want to snuggle with my dogs and make love to my husband. I want to eat my favorite foods, drink wine, and laugh out loud. I want to tell my friends and family that I love them over and over and over again.
I challenge anyone reading this blog to consider what you would do if you were faced with a life limiting illness that was not curable. How would you want to live the rest of your life? What does quality of life mean to you? With whom have you shared the answers to these questions?
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