Informational Articles

She sighs quietly and shifts slightly in her chair, gazing off into the distance.  Although it has been several years now it is still hard for her to believe that she survived that time.  All was well in her world.  And then the phone rang.  And from that time forward her life was changed forever.

She recalls vividly the message letting her know that her son was dead.  The few months afterwards are a blur to her.  She knows that she spent a lot of time sitting in his room with his things.  She knows that for awhile people were around her, some grieving terribly themselves, trying to do and say comforting things.  She knows that at the time there was little anyone could do that could take away the unbearable pain.   She remembers, too, the loneliness that came when there weren’t so many people around her anymore, and that when they were it seemed awkward for everyone.

How did she do it?  How did she get through those months, that first year, and then the second?  How was she able to function at all when all she wanted was the answer to one question:  why did this have to happen to my child?

Who will speak for you if you are unable to speak for yourself?  Seriously.  Try to answer the question.  Who, in your life, would best be able to explain your wishes for medical care if you cannot?  Is there anyone you could trust to be your medical decision maker? Have you talked to this person about your concerns and preferences?  Have you given guidance for those decisions by completing a living will?  Have you given legal responsibility for making those decisions by appointing that person to be your Medical Power of Attorney?

Most Americans enjoy and appreciate being independent decision makers.  We like having choices and cherish the ability to decide for ourselves what course our life will take.  We safeguard our independence by being informed consumers, through saving and financial planning, by having health insurance.  We even protect our assets and our family’s future by completing wills and doing estate planning.  Yet most people never take the time to think about possible end-of-life treatment options and write them down in an advance directive.   

On Mother’s Day weekend, Hospice of the Panhandle’s Grief Support Services will host a Mother’s Day Brunch enabling women to take time to gather and remember their mothers.  The theme for the brunch is Food for the Soul.

Food and women just seem to go together.  In most families it is the women who prepare the meals and assure all are fed. Most women learn about cooking and baking from their mother or mother figure, perhaps a favorite aunt or a neighbor.  Time spent in kitchens, preparing meals or making special foods for family or holiday celebrations are treasured memories in a woman’s life. There is almost always laughter and fun in the midst of hard work. A lot of teaching, learning, and talking goes on, too!

Recipes are legacies passed from one generation to the next.  The favorite ones are dog-eared and stained, written in a loved one’s hand, or torn from an old magazine with notes in the margins.  A person is never forgotten if a recipe for which she is known survives.

Just the act of preparing an old family recipe or breathing in the aroma that fills the home as something bakes can trigger memories of the women who have nurtured and nourished us.

My mother died suddenly more than 25 years ago...

           This week is Valentine’s Day, a perfect day to talk about hospice care for people who are suffering with serious heart disease. If you bought a card, a box of candy or sent flowers to a loved one who is coping with heart disease, please read on.  You may be able to give them the best Valentine ever-the gift of hospice care to help them live as comfortably and fully as possible. 

          End-stage heart disease ranks as one of the most prevalent diagnoses of hospice patients nationwide.  Yet many heart disease patients never find their way to a hospice program. Instead patients and families live in fear of when the next cardiac emergency will occur.  They have no one to call to get help or ask questions on the weekends or in the evenings so they end up spending their final months in and out of the emergency department or hospital receiving treatments that do little to improve the course of the disease. Costs of medical care mount causing additional stress. Patients and caregivers become bound to their home, unwilling to continue with their normal activities because they never know what to expect from the disease progression.

          What a difference hospice can make for people who have serious heart problems!  The supportive program of holistic care, provided by a team, enables people with end-stage heart disease to receive care at home. A nurse is on call 24 hours a day to provide information and support and if necessary to go to the home to help manage difficult symptoms.  This enables the patient to forego trips to the ED and hospital.

         March is National Social Workers’ Month and the National Association of Social Workers has chosen, as the theme for this month of celebration, Social workers are important to our nation’s future.

         One might wonder how hospice social workers impact the future when the work they do is with people who are preparing to leave this world. But there is truly much they do that is related to the future well-being of individuals, the community and our nation.

         Hospice social workers begin their service with people who are living with serious illnesses. In fact hospice patients are very much alive and most hope to live as long and as well as possible.  Their futures may be more time limited than the futures of the rest of us but they are no less meaningful to those patients. It is, in fact, the futures of hospice patients that structure the work of the social worker.  

Think about a recent health question that you had.  Maybe you weren’t sure whether you had the flu or just a bad cold.  Or you didn’t know what to do about a parent who is moving into the advanced stages of Alzheimer’s disease.  Whatever the question, where did you go for information and answers?  Did you ask your doctor, a family member, or a friend?  Did you read newspaper or magazine articles?  Or did you do research on the internet at sites like WebMD and MedHelp.org?  According to a 2010 Pew Internet & American Life study, if you are like 61% of internet users, you gathered information online before making a decision regarding treatment for the health problem.  The availability and accessibility of information on the internet is giving rise to a new generation in health care that begins with you!

            When a person is living with a serious illness there will come a time in the progression of the disease that curative efforts are no longer having the benefit they once had. I recently heard a physician explain this time as “coming to a fork in the road.”  He said that he often used this metaphor to help patients understand what their options were so they could make decisions for their end of life care that were best for them.

It’s a new year.  And while I was never terribly crazy about New Year’s Eve—always a challenge to stay up past 12—I do like the idea of having a fresh start.  I have always liked the process of setting a few goals and trying to work on them through the year.    There must be millions of others like me.  The papers and magazines this time of year of are full of articles about New Year’s resolutions.  Most of them seem to be related to self-improvement—loosing weight, improving fitness, de-stressing your life, eating healthier, and on and on and on.

Well, I am going to encourage you to add one item to your resolution list that is not so much about self-improvement but more about self-preservation and the preservation of your family.  It is the simple task of completing your advance directive. 

Like many baby boomers growing up in the fifties and sixties, my father was a veteran.  His footlocker was used as a storage container for old pictures and the Army blanket came in handy for picnics or trips to the beach.  We had a few photos of him in uniform and I remember a collection of buttons, pins and other mementos in his top dresser drawer.   

But were it not for these scattered reminders, we may not have known about his service experience.  Similar to many men and women, he talked little about his time in the Army. What we did hear about were the fun times he and his buddies had.  In fact my favorite picture of him was one in which he, in uniform, had his head thrown back in a laugh. (He loved a good joke.)

          Hospice and home health care are two home care programs available through Medicare, Medicaid and many private insurers.  While both programs provide home visits from nurses, social workers, aides, as well as physical, speech and occupational therapists; hospice and home health are very different services.  They have different eligibility requirements and different ways of billing.  They are each designed for different kinds of patients.  These differences are rooted in the Medicare guidelines.   

By Kathie Campbell, Marketing Director, Hospice of the Panhandle           

           Catchy title, huh?  Well, it comes as a result of an article I wrote a few weeks ago that spoke of the free informational visits we provide to any interested person.  That article caused a firestorm of activity in our intake department. We had more calls for informational visits that month than we had for any month prior.  That made us realize that the word FREE can have a huge impact!  So I decided to tell you about more of the FREE services provided by Hospice of the Panhandle.

Are you a person who is living with a serious illness like cancer, heart or lung disease? Do you wonder how you will manage if your disease worsens and you become limited in your ability to care for yourself?  And if so, do you hope to remain in your own home as long as possible?  Do you find yourself having to go to the ER more frequently but nothing is really done when you get there? Or are you in and out of the hospital with problems associated with your advancing disease?  Are you weaker than you have been or suffering with a loss of appetite?

Or might you be a caregiver who is helping a loved one cope with the changes brought on by such a disease? Are you wondering how you will manage if the situation gets more challenging? Or do you feel like there are already days you wonder if you will be able to keep up with the care much longer?  Are you at the end of your rope?

If you answered yes to any of these questions, why not contact Hospice of the Panhandle and schedule an informational visit to learn about the services?  There is nothing to lose.  There is absolutely no obligation to enroll and no cost when one of the hospice intake team members visits you to discuss care arrangements, even if those arrangements are plans for future care needs. 

Two weeks ago I wrote a piece about the important questions to ask when trying to determine the goals of care for one’s self or a loved one at the end of life. The theme was that people often suffer needlessly though futile treatments when other options for care may exist but are not offered.  Response to that article was surprising. We heard from quite a few people who requested advance directive information or just called to say the piece hit the mark for them.  Apparently there are some who welcome honest dialogue about these hard-to-talk-about issues. Hence part two—which really should have been part one.

Today’s topic is the importance of truth telling.  Because in order to make informed decisions about how we wish to spend our final days, we have to begin with the truth.

The problem, however; is the truth is often hard to get at. 

While most hospice workers say they love their work, I would venture to say that most of us agree that certain aspects can be very discouraging.  For me the most difficult part of my job is when I see patients come into the program at the last minute-when their disease has progressed to the point that they are bedfast and non-responsive.  I am disappointed when I read the monthly reports that say 6 people died before they were admitted into care.  A related issue that causes me concern is hearing about people who spend their final days, weeks and even months in the hospital, sometimes in the ICU, receiving life-sustaining treatments, even though it has been apparent that their organs were shutting down and there was no probable hope for improvement.

I sometimes wonder how it came to be this way.  How did we get so disenfranchised from dying that people believe that there must always be more we can do to eliminate disease, to improve health?   We are, after all, human beings and all of us will die someday.  We all know this.  Yet why do we expect, and sometimes insist that our medical providers to do one more thing to keep us or our loved one going.

   Carl was a thin, frail man who looked years older than his chronological age of 67. The heart disease he had dealt with for the past decade had finally grounded him.  He was confined to his home, on oxygen, and each day presented any number of challenges. He was also depressed. It was hard not to be able to do small jobs that at one time were a part of his everyday living. He was totally dependent on his wife and son, who he railed against because he wanted to be able to take care of himself. After one of these angry episodes he would sulk in his chair for hours, feeling guilty about his behavior and miserable about his life.  

   When Carl went to the doctor for his routine checkup, the doctor talked to him about hospice. He told Carl that his heart was never going to get any better and that the medicines he had been taking to improve his condition were no longer effective. He was clear that he did not know how long Carl had to live, but because of his progressive disease he was recommending hospice.  He explained that hospice would help Carl and his family manage the heart disease as well as provide a lot of other assistance.

   In the drawer in my desk is a 64 Sheet Drawing Tablet. Some of the pages have sketches on them. Others have poetry. On one is a picture of a baby. On another a picture of two older women.

   Near the middle of the pad, at the end of the entries, there is a verse:  “I want to know where is the exit out of here!  God I wish you could help me out of this here jam.”

   Employee Bob had always been a great worker. He arrived at work early, completed his tasks efficiently and was quick to volunteer to help out wherever he was needed. He was rarely ill and only called in sick twice in the 12 years he has worked for you.  Lately though you notice that his work habits have changed. He is tense during the day and seems to be talking on his cell phone a lot.  There have been several times in the past two months that he has called you stating he was running late and subsequently arrived at the office several hours after starting time. 

Martinsburg— Hospice of the Panhandle is one of 35 hospice programs from across the nation that has been selected as a partner with the National Hospice and Palliative Care Organization’s Caring Connections workplace outreach initiative, It’s About How You LIVE – At Work, funded by the Jacob & Valeria Langeloth Foundation.  The LIVE – At Work initiative is striving to increase awareness about the needs of working caregivers who struggle with work-life balance while taking care of their ill, elderly, or frail family members; and provide support for employers with working caregivers.

By Hilda Snyder, Hospice of the Panhandle Volunteer Coordinator

Exercise regularly, eat a well-balance diet and do something nice for someone, that is the advice you‘re apt to get from your doctor in the near future.  There is a substantial body of research evidence indicating that there are very real personal, physical and emotional benefits to helping others.  Dr. James House, of the University of Michigan, studied a group of people for more than a decade. The results of that study indicated that doing regular volunteer work more than any other activity dramatically increases life expectancy.    Volunteering provides individual health benefits in addition to social benefits.  Giving people are healthier people! 

Last week we celebrated the first day of summer. Most of us are thrilled to be in summer mode. We are spending more time outside as we relish the longer days. We love the food, celebrations and sports of summer and even the worst workaholic seems to find more time for relaxing with family and friends.

By Kathie Campbell,
Marketing Director, Hospice of the Panhandle

Because Americans are both unfamiliar with and uncomfortable with death, most people harbor any number of misunderstandings about dying.  One of the most common ones we deal with in hospice is the belief that people need IV fluids to be comfortable.  Many people think that without IV fluids the patient in the last days of life will die a terrible death of dehydration.