Welcome to House of Light, a blog produced and managed by the staff of Casa de la Luz Hospice. Casa de la Luz ("house of light" in Spanish) is a locally owned and operated hospice, serving the city and surrounding communities of Tucson, Arizona. Through this blog, we hope to offer education, information, and support about caregiving and hospice care to terminally ill patients and their loved ones. For more information, visit the contact us page.

Wednesday, August 31, 2011

The Wednesday Image: Sunset Behind the Red Rocks

Image taken by Brianne Pekar, Sunset at Red Rocks

Hospice care teaches us not only how to approach death with dignity, but it also teaches us how to appreciate life. The Wednesday Image is a weekly series featuring images that represent what we love and appreciate most about life in Tucson.

Monday, August 29, 2011

Choosing A Plan--The Importance of Advance Directives

In my business I am called on to be a coach, a consultant, a mediator, and a guide. Many folks know what they need to do but they don’t do it; many folks talk the talk but they don’t walk the walk. I try to hold folks accountable by not just giving them the Five Wishes, but then following up with them to make sure they filled it out.

The statistics show that Americans are still inadequately prepared for the end of life. This is not a question of if; it is a question of when. Now is the time to start planning.

So with that, how will you be remembered? Let’s go back to high school quickly. How did you think you'd be remembered?

I always thought I’d be remembered because Jerome Smith stepped on my skirt and it was elastic waist and was at my ankles, or because I went to the junior homecoming dance with Logan Smiley, the class clown, and he convinced me to actually dress as a clown with half my face black and the other half white.

But no, that's not how I have been remembered.

I am remembered because I was student body president and just 10 days after my father’s unexpected death, I delivered a speech at our high school graduation to my fellow seniors to fly! To spread their wings and fly. How were you remembered?

As I look back, I am grateful that we are not remembered for the chaos that surrounded our lives because of a lack of planning. My father had no will, no business exit strategy, and no Five Wishes. He simply was gone.

I believe that experience alone has shaped a large part of who I am, why I do what I do, and what my message is for you today. My take is you have two basic choices: choose a plan or choose chaos. If you choose to do nothing, you are actually choosing the law that is written for you and ultimately, choosing chaos. Do you want your legacy to be he or she didn't plan and now, it’s a mess?

We spend time planning for our weekend, our vacation, our Thanksgiving dinner, yet we don’t spend time discussing our plans for retirement or our health or our legacy. Through my work, I find folks don't take the time and don't want to talk about it. Here are some how to tips.

·        Set a goal.
·        Set a deadline and have a third party hold you accountable.
·        Review and make changes on your birthday and anniversary.
·        Like Nike says, just do it.

Many spend a lot of time planning financially, but health care will eat it up if you are fighting a long-term or chronic illness. When I do generational and holistic planning, we look at everything you have done, everything you wish for, and see if the plan meets the wishes. Then, we tweak if necessary. The Five Wishes is used in each client meeting because I see it as an integral part of a strong financial plan. More and more people want to make sure that their money will do what they want it to do during their lifetimes and want to leave a legacy as effectively and efficiently as possible. Regardless of age, social, or economic status everyone needs to plan! Everyone needs to communicate their wishes.

Gail Sheehy, the author of Passages in Caregiving—Turning Chaos into Confidence, talks about having a family meeting and creating a circle of care before the crisis. Many families are caught off guard by the “call” and everything changes. If you have a plan of what everyone is willing to do, what talents each brings to the group, the time each is willing to give, and all communicating their wishes, it will  make the “call” go a bit smoother.

The Five Wishes lets folks in before the crisis. I hope you choose to start planning today.

By Tiana Ronstadt, Casa de la Luz Foundation’s Vice President, Community Outreach and Public Relations, and also the Founder and President of Power Women Investing

Friday, August 26, 2011

Friday Five

The Friday Five is our weekly roundup of links to smart articles and helpful resources across the Web.

1. We hear plenty of myths about hospice care each day. Unless you've experienced the benefits of hospice care or you've worked within the hospice community, chances are you've heard some misinformation about what hospice is. The Hospice Foundation of America has a Myths and Facts web page with a few common misconceptions and the facts about what hospice care is.

2. We are always encouraging family caregivers, our staff, and our volunteers to remember to take care of themselves. Self care is incredibly important when you're caring for others, especially in often overwhelming situations such as care for a terminally ill individual. This blog post, "Taking care of yourself sometimes means being selfish," offers an excellent analogy and image to help explain the necessity of self care.

3. Casa de la Luz was honored to be asked by a local NPR reporter to be a part of his article about the changing landscape of retirement and old age. His article, "Retirement Redefined: What Happens If You Outlive Your Savings," includes quotes from one of our Inpatient Unit social workers, Kim Bingham. Thanks to reporter Michel Marizco for highlighting an important and personal issue to many older adults out there. 

4. When it comes to facing a terminal illness, many of us don't know what to do until the time comes. Are you living with a serious illness? The National Hospice and Palliative Care Organization's Caring Connections program offers a number of articles for those living with an illness. Learn more about managing symptoms, making practical decisions, how to talk to your doctor about pain, and more.

5. The Casa de la Luz Foundation presents an annual conference about end of life issues every fall. This year, Dr. Rachel Naomi Remen is the keynote speaker for Listen, Learn, Live: Stories of Life, Mysteries of Death.

Wednesday, August 24, 2011

The Wednesday Image: Mountain Sunsets

Image taken by Agnes Poore, Picacho Peak sunset, Sept. 6, 2010

Hospice care teaches us not only how to approach death with dignity, but it also teaches us how to appreciate life. The Wednesday Image is a weekly series featuring images that represent what we love and appreciate most about life in Tucson.

Monday, August 22, 2011

Great Moments Can Be Small Moments--A Hospice Volunteer's Story

Years ago my sister told me she had three months to live.  She asked me to “help her die.”  Stunned, I asked her what she meant and she gave me a list with the following:

-                     die at home
-                     no artificial means are to be used to keep her alive
-                     pain meds only to help her with pain
-                     a living will
-                     and, to die with dignity.

Diane Gilbert with photo of her sister

We worked everything out as she wanted; her doctor cooperated with us.  A living will was drawn up, but at the time, a living will was not recognized in the state.  She died at home with no tubes to keep her alive; her doctor or a nurse came in regularly to administer drugs for pain.  My sister died with dignity.

The above is all provided with hospice care.  But, my sister died in 1978, and there was no hospice as yet.  Elizabeth Kubler Ross was talking about a different way of dying but it was not yet accepted. 

I never forgot the experience of watching a loved one die.

Thirty years later, after I retired from work, I found I was tired of playing Bunco and cards. I wanted something more in my life.  I contacted Casa de la Luz Hospice and became a volunteer.  Now, I don’t think I have done anything more important in my life.  I had been conditioned to think that my life revolved around the special moments—marriage, raising children, children graduating, more marriages, and then grandchildren.  These things are all important and worth remembering.  But, by becoming a hospice volunteer, I have learned that great moments can be what may be a small moment.  I am thinking of being in the Casa de la Luz Inpatient Unit, sitting vigil.  The harpist came in and began to play; I was near the patient.  The patient opened her eyes and asked me, “Am I in Heaven now?”  I replied, “No.  Not yet.”  That was a moment, small to others, but big to me that I will not forget. 

It doesn’t take me long to become involved with a patient.  It’s important to me to learn about the patient’s past, family, likes, dislikes, and what makes the patient smile.  The patient learns that I am there to help, to listen, and to be quiet—whatever the patient needs.  We share experiences, have new experiences, and all is confidential.  I’m surprised, sometimes, at what I hear. 

Each patient is different and has different needs.  For example, if I am told a patient isn’t eating enough, then I arrange my visits around the lunch hour so that I can encourage the patient to eat.  You’d be surprised how many patients now eat dessert first and then their lunch.  On holidays I try to dress the season—maybe a Halloween shirt, a Santa hat, or red, white and blue for the 4th of July.  Little things mean a lot to a terminally ill individual who is alone and has outlived his/her family and friends.

I am also a knitter. I love to knit prayer shawls and afghans for our hospice patients.  I have a memory afghan that I knitted a couple of years ago.  It is made up of 20 individual squares, each knitted with a different pattern and then sewn together.  Each of the squares was knitted while I visited my patients.  I treasure it.

I carry a hospice bag with me at all times.  In it I have a book to read, crossword puzzles, snacks and water, and of course, my knitting. As a vigil volunteer, I never know how long my visit will be. I like to be available day or night to keep vigil with a dying patient. If I’m going for a companion visit with a patient, I try to keep it to one or two hours.  I watch to see how the patient is holding up; is he/she looking tired?  I will drive anywhere to see a patient.  Distance is not a problem to me. 

I cannot explain the reward I receive by comforting someone who is in need.  I just know that the reward is huge, and I think my patients can “feel” my energy.

Being a hospice volunteer is not for everyone. But, to me and the other volunteers, our rewards are well worth it.

Often, I am asked, “How can you watch someone die?”  My reply is, “I don’t watch a patient die; I believe that I’m there to help them pass on to the next stage of life.”

By Diane Gilbert, volunteer of two years

Learn more about the various volunteer opportunities with Casa de la Luz Hospice on the Volunteers page of our website.

Friday, August 19, 2011

Friday Five: Links about hospice and family caregiving

The Friday Five is our weekly roundup of links to resources and smart articles across the Web.

1. We're strong supporters of Hospice Action Network, an organization that is committed to protecting and expanding Americans' access to hospice care. Like HAN on Facebook for regular updates about their advocacy efforts and education about hospice care in the United States.

2. Cultural sensitivity is very important at such a precarious time of life, and not all cultures were designed alike. This week, GeriPal, a Geriatrics and Palliative Care blog, had a thought-provoking blog entry discussing how Asian cultural norms can impede end of life care. Julie Thai also shares how legislators and clinicians in Taiwan are addressing the end of life issue.

3. Within our community, we often see families with long-distance caregivers. In sunny Arizona, there's many a retiree with family living elsewhere in the country. We know it's not easy to care for Mom and Dad from hundreds or thousands of miles away, and this article from AARP's Caregiving Resource Center offers tips for long-distance caregivers.

4. Hospice care isn't generally something families research for months ahead of time. Often, we're called in the last days of life, and this could be a family's first time experiencing hospice services. Here are answers to some frequently asked questions about hospice care.

5. And finally, because it's always interesting to see if the experts take their own advice, here's an article from the Chicago Tribune about how geriatrics experts care for their own elderly family members.

Check back in with us on Monday for a story from a Casa de la Luz Hospice volunteer, and have a terrific weekend! 

Wednesday, August 17, 2011

The Wednesday Image: Arizona Skies

Image taken by Carolyn Lytle, July 25, 2011, Oro Valley, Arizona

Hospice care teaches us not only how to approach death with dignity, but it also teaches us how to appreciate life. The Wednesday Image is a weekly series featuring images that represent what we love and appreciate most about life in Tucson.

Monday, August 15, 2011

Nutrition and Hydration at End of Life

“You mean you’re not going to make him eat.”

That’s a statement that is sometimes said by grieving people when their friend or family member is dying. One of the most difficult decisions that must be made at end of life is whether or not to insist someone eat or drink, or to use artificial nutrition and hydration.

Sometimes family members fear that they are “starving” their loved one. When someone is not well, our first response is to make sure they are provided with fluids and food in order for them to get better. That is what we have always known, and that is how we operate. When someone is sick, we bring them chicken soup. In reality, when we have the flu, we often don’t feel hungry or thirsty, and we may force ourselves to eat or drink so we can improve.

During the end of life process, there is not anything that can help someone get better. Instead, the organs start to shut down. When that occurs, our loved one usually doesn’t feel hungry or thirsty. Their mouth may get dry and that can be uncomfortable. At this point, water on a sponge is provided frequently as part of mouth care. It is best to offer water, ice chips, and other fluids as long as someone wants them and is able to tolerate them.

When our loved one refuses food or water, or they are no longer responding to us, nutrition and hydration at this point can create many discomforts and complications instead of helping them “feel better.” If the person is not able to swallow, they can choke on or “aspirate” the liquid or food into their lungs. This can be excruciating and can lead to pneumonia. Also, if the person’s organs are not working properly, fluids and foods can lead to nausea and vomiting. Food cannot be digested in the same way a healthy body digests food.

An unfortunate result of IV fluids is often swelling, or “edema,” because the kidneys are not able to properly utilize the fluids, and they pool into areas of the body such as the hands, feet, and the lungs. Swollen extremities can be very painful, and fluids entering the lungs can contribute to pneumonia. In other words, our best intentions of making our loved one “better” or “more comfortable” can often do exactly the opposite of what we want.

If someone can and desires to eat or drink, then encourage them and give them anything that sounds good. We had a patient once who had bites of ice cream every couple of hours. Why not? But even if your loved one is not desiring food or drink, rest assured that when you do not force someone to eat or drink, you are actually helping them to be “more comfortable” during the dying process.

By Kim Bingham, Social Worker

Friday, August 12, 2011

Friday Five

The Friday Five is our weekly roundup of links to resources and smart articles across the Web.

1. We shared this article, Hospice and The End Game, earlier this week through our Facebook page and Twitter feed. It's a wonderfully balanced article that offers a personal perspective about hospice care as well as an intelligent, knowledgeable discussion about how hospice is being affected by ongoing public debates. The writer helps put a face and a humanity to what has mainly been an argument centered around numbers.

2. Volunteers are an integral component in hospice care, providing companionship to patients and offering respite to family caregivers. Learn more about how you can become a Casa de la Luz Hospice volunteer.

3. It's tough caring for a seriously ill loved one. Our Living with Serious Illness monthly e-newsletter offers handy tips for family caregivers

4. Do you want to learn more about the Medicare Hospice Benefit? The Hospice Action Network has a downloadable one-page pdf with a clear explanation of your hospice benefit.

5. We always like to see what's happening around the hospice and palliative care blogosphere, and the San Diego Caregiver's Blog from San Diego Hospice had a great entry this week with tips for seniors on how to stay cool during the hot summer months.

(OK, if you were counting, there were more than five links this week. Sometimes, there's just too much to share! Follow us on Facebook and Twitter for daily inspiration, more advice and tips for terminally ill patients and their loved ones, and more great links to the latest hospice news.)

Wednesday, August 10, 2011

The Wednesday Image: Wildlife Wonders

King snake climbs a cactus in the photographer's backyard. Image taken by Liz Curry, May 23, 2011.

Hospice care teaches us not only how to approach death with dignity, but it also teaches us how to appreciate life. The Wednesday Image is a weekly series featuring images that represent what we love and appreciate most about life in Tucson.

Monday, August 8, 2011

Understanding Death and Dying: Societal Assumptions

In this series of conversations about the challenges and opportunities that the final chapters of life present, I will discuss basic information and some insights I have gained regarding the complex landscape that is end of life.  It is important to contextualize the individual’s experience of dying within the framework of the family, community, and society.  As people are exposed to the complexities of the legal system, the medical field, their own unique family dynamics, and the continual and dramatic changes that the body is subject to, knowledge helps to reduce suffering and fear.  Over the next several months, I will explore legal and ethical issues, the dying process, complex family dynamics, pain management, grief and loss, and caregiving challenges.

To begin the series, it is helpful to identify a few powerful societal assumptions and norms that influence how we think and feel about the dying process.  There is an unexamined myth regarding death—that death is an unnatural enemy to be held at bay at all costs.  There are many factors that contribute to our society’s denial of death, such as medical technology that prolongs life, the cult of beauty and youth, which is afraid to acknowledge death as a natural part of the life cycle, and the distorted depiction of death in video games, TV, and movies.

Part of the work of the hospice movement is to provide the information and tools to support and awaken individuals, families, communities, and our society at large to the importance and inherent meaning of the passage through the end of life.  Hospices offer the gifts of humane and individualized care, taking responsibility for the safety, comfort, and day-to-day management of patients and their loved ones as the dying process unfolds.  Hospices also are a resource for health care providers, hospitals, care facilities, and caregivers.  They offer information and knowledge that help empower us all to care for one another in a time of vulnerability and great need.

Next month, I'll discuss planning ahead for the end of life. I'll address the legal, ethical, healthcare issues that families should discuss and decide upon together. I will offer tips for promoting open, honest, heartfelt conversations with all those involved in the decisions and the implementation of the care plans.
Over this series of conversations, you and I will explore a broader and perhaps more supported framework for understanding and actively helping those we love, and ourselves, at the end of life.

By Marianne Schloss, RN, M.Div

Friday, August 5, 2011

Friday Five

1. Chicken Soup for the Soul is seeking story and poetry submissions from family caregivers. The deadline to submit is August 31, 2011.

2. When it comes to selecting a hospice, do you know the right questions to ask? Do you know what to look for in a hospice? Caring Connections, a program of the National Hospice and Palliative Care Organization, has created a new worksheet designed to help families choose a quality hospice. The document suggests questions to ask the hospice, helping ensure that you make the right decision for you and your family.

3. Let your voice be heard, even when you can longer speak. Filling out the Five Wishes (by hand or online) makes sure that family, friends, and health professionals know what your wishes are in regards to end of life care. 

4. The Washington Post printed this terrific article on July 25, "Siblings joined forces to help their parents celebrate life and plan for death." The article is an example of how families can have the end of life discussion with each other. I'm impressed with how the writer and his family carefully planned their discussion weekend, making sure to schedule an appropriate amount of time for each topic (including factoring time for reminiscing and emotional moments), creating to-do lists for each person, and setting out enough refreshments to cut down on interruptions.

5. This blog entry, "Hospice and Hispanics: Doctor-Patient Communication" from Frances Shani Parker's Hospice and Nursing Homes Blog reminds us cultural differences can influence how a patient might approach a terminal diagnosis and a hospice referral. We believe that everybody deserves to die with dignity, and as hospice professionals, we must strive to be aware of cultural differences. The Hospice Foundation of America video at the end of the entry is a wonderful introduction to philosophies in Hispanic culture.

Wednesday, August 3, 2011

The Wednesday Image: Remembrance

Image taken by Rodger Anderson at Casa de la Luz Hospice Spring 2011 Memorial Service at St. Philips in the Hills Episcopal Church.

Hospice care teaches us not only how to approach death with dignity, but it also teaches us how to appreciate life. The Wednesday Image is a weekly series featuring images that represent what we love and appreciate most about life in Tucson.

Monday, August 1, 2011

Life (And Death) Lessons

I attended my first funeral when I was 20 years old. The funeral was for a family friend.  I had no idea what to expect, and I felt uncomfortable. I didn’t know what to say to people. I knew at that time I wanted to be a social worker, but assumed hospice work would never be for me. How could I possibly help people at this most difficult time when I wasn’t comfortable facing death myself?

It wasn’t until I was older (and wiser) that I realized many of the basic lessons I learned in school were also the same tenets I would share with my hospice families. These lessons allowed me to help the families adjust to their loved one’s terminal condition.

The first life lesson learned is that silence is OK. Just being present for someone and listening is often what is most needed. A gentle hand-holding can be very powerful. I often educate families on just “being there” for their loved one. Creating a “presence” for someone, especially when it is non-judgmental, accepting, and caring, can provide a comfort beyond words.

Another lesson learned is that you don’t necessarily have to fully accept a situation in order to get through it. We are all unique beings. Life does not come to us wrapped up all neat with a big red bow, and neither does death. I have learned to be more accepting of my own mortality, but it doesn’t mean that I have fully embraced it. And that’s OK.

Families and patients need to understand it’s alright to feel anger, frustration, helplessness, and fear. However, how we deal with a situation is normal for each of us. While it would be ideal for our patients and families to accept the dying process, denial is often a factor that puts a wrinkle in this plan. We need to allow them to lead us in their journey, to meet them where they are, not where we would like them to be.

My last life lesson was that in order to best help our patients and families, we need to set goals with them, not for them. Many times it is hard to see the whole picture. Sometimes it just works best to break a situation down, frame by frame, and have smaller, short-term goals. By developing relationships with our families, we can continue to grow, to teach, to listen, and to learn from one another. Enjoy the journey.

By Sharon Sanchez, Social Worker