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, October 31, 2012

The Wednesday Image: View of Catalina Mountain

A view of the Catalina Mountains, right before sunset
Image taken by Carrie Bui

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

Monday, October 29, 2012

Hospice Team: How We Learn From Patients

As a social worker for Casa de la Luz Hospice, I have the honor of working with many different types of families, including those of different cultural backgrounds.

Once,  I had the privilege to serve a large family who had lived in a refugee camp for 20+ years in another country before immigrating to the United States.  The family came to America with the hopes and dreams of so many other immigrants—they wanted a chance to be free, to enjoy prosperity, gain an education, contribute to the greater world and be with their family. As this family began their integration into U.S. society, they were faced with the unexpected—an elderly family member became ill with terminal cancer.

Without a doubt, the family faced many hurdles—an elder’s terminal illness, language and cultural differences, and employment and financial concerns. 

In the refugee camp the family learned to deal with illness without much medical care. Now, they had a whole hospice team sent to their home to help them manage their loved one’s care. It was overwhelming for them at first.  

The family was now facing end-of-life issues, and they expected to care for their loved one at home. In their culture, the role of the eldest local son was to be primary caregiver, financial provider and overseer of the entire family. Other family offered support and contributed to the patient’s care, but this eldest son had the greatest cultural pressure.

The son worked a part-time job outside the home to sustain the family, and was also the Medicare paid, part-time primary caregiver. He eventually became a certified caregiver.

The final challenge for the family was how to provide cremation services for their elder after his passing. The cost of the lowest cremation service would absorb 3/4 of the total family monthly income. A solution was found, but the cost of final arrangements is still a dilemma many families face in hard economic times. (Editor’s Note: See our previous entry about making plans for final arrangements. If you do not yet have plans in place, ask your hospice social worker to guide you in making funeral arrangements.)

I was touched most by how the family found creative ways to survive and how strong their family was in supporting each other. They showed a high level of adaptability and resilience.  They were eager to share their cultural hospitality with the hospice staff by making a special chai tea when we visited. 

This family was not afraid to ask for help, but was also determined to find ways to help themselves. They continually expressed “how proud we are to be Americans.” They moved halfway around the world to realize a dream, and in the midst, had to persevere through the loss of an elder. They showed me the ultimate level of humanity—how we love, how we adapt, how we continue to persevere through the most difficult of challenges.

By Christy Noriega, Hospice Social Worker

Friday, October 26, 2012

Friday Five: Things We Read This Week

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

1. We loved reading about this program at the University of Iowa, "UI students learn end-of-life planning with Honoring Your Wishes program," to help young adults learn about death and dying, and planning for the end of life. You're never too young to fill out advance directives, and we appreciate the effort to reach more individuals about this issue sooner rather than later.

2. Speaking of advance planning, it's important to have your important documents in order. Check out this article from the Wall Street Journal, "The 25 documents you need before you die," to help you figure out which documents you need and how to organize them for your family members, lawyer, healthcare practitioner, or other relevant individuals.

3. Last week we posted a link to part 1 of a great series from Laura Hahn, the blogger of Arthur & Bernie. This week we give you part 2 of "50 Life Lessons My Pop Pop Taught Me." We're especially fond of 27 and 49. What life lessons would you offer to others?

4. We loved this story that just exploded across the Internet this week of a World War II veteran on hospice care who was determined to vote for the last time in his life. "A former WWII internee in hospice sets an example for family members by voting" is inspiring and heartwarming.

5. Have you subscribed to our monthly e-newsletter for family caregivers yet? Click here to sign up for your subscription and to read this month's newsletter.

Wednesday, October 24, 2012

The Wednesday Image: Sunset Colors

Sunset in Tucson, Arizona
Image taken by Paula Williamson

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

Monday, October 22, 2012

Expressing My Wishes Through a Living Will

I’m a control freak.  Sure, I trust my doctor.  He listens to my concerns, explains my options, along with his recommendations and respects my choices.  But he’s just one doctor.  In a hospital there are dozens of doctors.  In Arizona, there are thousands of lawyers.  Arizona law makes my 87-year-old mother who lives in West Virginia my medical surrogate.  I can’t in good conscience leave her in a position where she may have to sign papers to allow my death.

Since I want to be in control, even if I’m unconscious, anesthetized, or comatose, I have a living will and a medical power of attorney (MPOA).  Actually, I have two.  Why two MPOAs?  Both are dear and trusted friends.  One is a registered nurse, and the other has been a friend for almost 30 years.  They have seen me through sickness and surgery, and I know that they will care for me no matter what.

 They, along with my doctor, are my team.  Guided by my living will, they will speak for me when I cannot speak for myself. 

It doesn’t matter what my living will says—do I want everything done or not, do I want a feeding tube or not.  The point is that my living will is a legal document expressing my wishes for my health care.  I gave copies to my doctor and to Karen and Sue, my MPOAs.  They all know what my wishes are and with my living will they have the legal power to advocate for me when I cannot advocate for myself.

I cannot imagine why anyone would not want to have a living will.  People frequently make statements about how they want to live, or be allowed to die, or pursue every health care option.  They know what they want.  So why not have a legal document stating just that?

It’s easy. The Casa de la Luz Foundation provides hard copies of the Five Wishes, a legally recognized advance directive document in Arizona, or if you prefer, the Foundation has a link to an online version of the Five Wishes. You can also download and fill out a state advance directive through NHPCO’s Caring Connections website. Arizona also has an Advance Directive Registry, free for individuals who wish to register and store their directive. The registry allows loved ones or health care providers opportunity to look up your directives.

So, be a control freak like me.  Create your living will, and make your wishes known.

By Mary Toren, RN

Friday, October 19, 2012

Friday Five: Inspiring Life Stories

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

1. We believe hospice care offers individuals with a life-limiting illness, and their families, a more dignified way to approach death. Hospice nurses offer education about the dying process, comfort, care, and support. And, in this article, "Dallas hospice nurse with cancer offers comfort," we're touched by the empathy this nurse provides to hospice patients. We love a good, inspiring story, and we think this is one of those stories.

2. In our Twitter feed this week was a link to this article on the AARP blog from Laura Hahn, the blogger behind Arthur & Bernie. We know that as the end of life nears, many of us become a little more reflective, thinking about past events and what we might have learned. That's exactly what Laura is expressing in her "50 Life Lessons My Pop-Pop Taught Me-Part 1," and the list is funny, inspiring, and a lovely tribute.

3. Often, in our posts on this blog, we talk about planning ahead and the things you should do "just in case." These things are most often related to organizing important documents, filling out your advance directive, naming a healthcare power of attorney. And, these are all important things to do. They are gifts to your loved ones in the event of something happening to you. But, this Forbes article, "Six Things To Do Before You Die" is a nice piece that touches on more than just the estate planning of dying. We love her reminders that you should live your life, accomplish your goals, love your friends and families.

4. In thinking about life lessons and things to do before you do, I found Alice's Bucket List, a blog by a 16-year-old girl named Alice with cancer. She's trying to accomplish her bucket list and fighting a four-year battle with cancer. Hopefully you'll be as impressed as we were by how many items she's already crossed off her list.

5. We hope the more information we can offer you about hospice care, the more you'll support this philosophy of end of life care. The Hospice Action Network launched a new Legislative Action Center that offers information and tools for individuals to easily learn about what's happening in hospice from a policy perspective and to show your support for your hospice care by contacting our lawmakers.

Wednesday, October 17, 2012

The Wednesday Image Goes to Campus

A view of The University of Arizona's Old Main
Image taken by Carrie Bui
Hospice care teaches us not only how to approach death with dignity, but also how to appreciate life. The Wednesday Image is a weekly series of images representing what we love and appreciate most about life in Tucson.

Monday, October 15, 2012

Book Review: Dying Well by Dr. Ira Byock

Working in hospice tends to change your perspective on life, for the better, I believe.  I have noticed that I tend to hug my children more often.  I am less likely to get upset at my husband over little annoyances.  I am less afraid of this topic: death.   Therefore, my reading list has changed dramatically.  A few years ago, I am not sure this title, Dying Well by hospice and palliative care physician Dr. Ira Byock, would have made the list. However, it is now among many books in my reading collection of the same topic. 

In this book, Dr. Ira Byock delves into the final stages of life through the perspective of several patients he helped care for during their time on hospice care.  Each patient’s experience of nearing death is unique and personal, allowing the reader to see different perspectives on a phase of life we all will eventually go through. 

Most impressive to me was that Dr. Byock opens the book with his own personal experience of helping a dying loved one, his own father.  You are immediately brought in to the most intimate details of a family going through just what we all fear the most for our own loved ones: the first symptoms, the diagnosis, the treatment, the hope, the treatment failure, and finally, the realization that this person you love is going to die. 

I will admit to having my eyes well with tears on several occasions while reading this book.  But, it was just as uplifting and life affirming.  Dr. Byock eloquently details the emotional roller coaster that he and his family, as well as the other families in the book, go through during this end of life journey with their ailing loved one, and how hospice care helped them. 

I highly recommend this book to anyone, especially those going through similar circumstances.  It verifies that there is no one right way to behave under these circumstances.  Each family, each person is going to have different emotions and different ways of dealing with those emotions. Some may accept their fate willingly; others will fight until their final breath.  Some families may come together quickly while others may be torn apart initially. 

In the end, each of the patients and families portrayed says good-bye to one another in their own perfect way.  That is the definition of dying well.

By Brandie Kiracofe, Operations Supervisor

Editor’s Note: The Casa de la Luz Foundation is pleased to welcome Dr. Ira Byock back to Tucson this November for the Foundation’s annual end of life conference. Read the press release about the event here.

Friday, October 12, 2012

Friday Five Talks About Death

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

1. Bill Keller wrote an interesting opinions piece for the New York Times entitled "How to Die." It's most interesting for its comparison of an England hospital's palliative care program and the United States' method for dealing with a dying patient. It's important that we ask ourselves the really hard questions about how we want to die, and considering the possibility that death does not have to be as difficult as we make it.

2. We loved how this one family decided to tackle on those big end of life care questions, as told in this ABC News story, "Three Generations Gather for End-of-Life Conversation." It's a great conversation between a father and his two adult daughters, recognizing the importance of wanting to be able to fulfill their father's wishes. I found the end of the story especially poignant as the adult grandson also shared his wishes, if anything were to happen to him. End of life planning is not only for the elderly; it's something that could affect any one of us.

3. We stumbled across a lovely essay on The Root, entitled "My Father's Beautiful Death." The writer shared his family's story of their experience with hospice care. I particularly liked this story because it wasn't just about how hospice cared for the patient, but the writer and his family also felt truly embraced and cared for by the hospice. The support for a patient's loved ones is one of the great strengths of hospice care.

4. When it comes to death and dying, families also find they have to deal with plenty of practical issues, such as funeral planning. You can use this Funeral Planning form from the National Caregivers' Library form to discuss what kind of memorial service your loved one would like.

5. For those of you in or near the Tucson and Pima County area, and interested in expanding your knowledge and education of the end of life experience, the Casa de la Luz Foundation invites you to attend their 12th annual End of Life Educational Conference, "Dying in America: Ensuring the Best Care Possible" with keynote speaker, Dr. Ira Byock, a leading hospice and palliative care physician and bestselling author. Registration is available through the foundation's website. The conference is $65 to attend, and continuing education credits are available.

Wednesday, October 10, 2012

The Wednesday Image: In Honor of Our Loved Ones

Casa de la Luz Hospice Fall 2012 Memorial Service
Image taken by Brianne Pekar
Hospice care teaches us not only how to approach death with dignity, but also how to appreciate life. The Wednesday Image is a weekly series of images representing what we love and appreciate most about life in Tucson.

Monday, October 8, 2012

Role of the Hospice Social Worker: Providing Presence

I believe it can be a bit of a challenge to understand what hospice care is, and further, to understand the role of each hospice staff member. I have been a hospice social worker for almost five years, and in my experience, one of the roles of the social worker is to be a calming presence for the patient and family.

This is not a role unique to the social worker, by any means.  Nurses, aides, spiritual counselors, volunteers, and others all provide this role of “presence” to the patient and the family.  And being with or being present to the family can be a great challenge to us all, especially in a society that is most often all about “doing” and “fixing.” 

I thought I might share with you a story about a time when I quite unexpectedly had the opportunity to practice presence.  I had arrived at a family’s home with the expressed request and plan to work with the patient’s spouse on completing FMLA (Family & Medical Leave Act) documentation for her employer. 

When I arrived, the spouse and her daughter said that the patient was declining rapidly and speaking very little.  Also, they said his breathing had changed. The patient seemed to be gasping for breath, and they were uncertain about what they should do.  At the request of the patient’s spouse, I entered the patient’s room.  He appeared to be struggling to breathe, and his breathing sounded like gurgling.  It had been some time since I had been present in the room while someone was actively dying, but I was fairly certain that was what was happening.  The wife and daughter were very anxious, so I encouraged them to call the RN. 

The RN recommended they locate the oxygen concentrator, to provide the patient with some oxygen, and said she would arrive soon.  While his spouse and daughter went looking for the concentrator, I remained in the room with the patient, my hand gently laid on his arm.  Even in the short space of time they were looking for the concentrator, the patient’s breathing changed again.  The spaces between his inhales became fewer and farther between, his breath slowing dramatically. 

When his wife and daughter returned to the room, I told them that my experience suggested that the patient was taking his last few breaths, and perhaps it would be more important for them to simply hold him and talk to him gently, tell them they loved him, and that they would be alright.  The family gathered around him and held and spoke with him while I remained in the background of the room as the patient peacefully and quietly died.  It was a powerful moment for the family as well as for me, being in the room with the patient as he let go of life.  I felt grateful and honored to be a part of his death.

There was nothing for me “to do” in this instance.  My role was merely to be a presence for the patient and the family at the time.  We social workers often find ourselves in this role, and it includes being attuned to the needs of the people in the moment we are there and practicing good listening skills, hearing not just what is said, but what is not said, noting what is happening in the moment as well as what is not happening.  And, often there are no obvious rewards. After her husband’s death, the wife thanked me for my presence and witnessing of her husband’s death.

I look forward to sharing more social work stories with you in the future.

By Carol Miller, Hospice Social Worker

Friday, October 5, 2012

Friday Five: Caregiving Responsibilities

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

1. The Washington Post offered a great opinion piece, "The growing burden on caregivers" from Michelle Singletary this week about the responsibilities family caregivers are shouldering. It's a heavy burden, affecting millions in this country, and we're confident that the more national attention family caregivers receive, the more resources we can develop for this population. And we have to say, there's power in the fact that Singletary writes this column from the personal experience of helping care for a diabetic father-in-law.

2. We tend to focus a lot on the sandwich caregiver, the middle-aged adult caring for elderly parents at the same time they're trying to care for young children. CNN presented this great reminder that not all caregivers are middle-aged adults. Some caregivers are teenagers, young people who've had to grow up quickly and care for an ill parent or assist the family with an aging grandparent. "Young caregivers put life on hold" is at once heartbreaking and inspiring. Make sure you watch the videos on the side, and keep a tissue handy.

3. The Pima Council on Aging offers support groups for caregivers around the Tucson area. The groups are open to anyone who provides care to individuals aged 60 or older. Support groups are free of charge, and PCOA recommends calling in advance to confirm meeting time and location if it's your first meeting.

4. Is it possible you could be missing out on potential benefits? This AARP Benefits QuickLink can help you discover programs that will save you money on health care, medications, utilities, food, and more.

5. Are you on Facebook? So are we! Like Casa de la Luz Hospice on Facebook for our morning inspirations, practical tips for caregivers, and links to news of note.

Wednesday, October 3, 2012

The Wednesday Image: Resting Bird

Image taken by Crystal Cannon
Hospice care not only teaches us how to approach death with dignity, but also how to appreciate life. The Wednesday Image is a weekly series of images representing what we love and appreciate most about life in Tucson.

Monday, October 1, 2012

Online Resources for Family Caregivers

AARP Caregiver Resource Center

This online resource center is a wealth of information for individuals caring for an elderly adult. The AARP Caregiver Resource Center has articles about caregiving, worksheets to help caregivers organize health and legal information, and regular webinars and live chats to help answer your caregiving questions. We love to follow the Take Care blog for regular updates from Amy Goyer, the AARP Family Expert who blogs about her own caregiving challenges for her elderly parents.

Caregivers can find a library of information and educational resources from the National Family Caregivers Association, as well as support from other caregivers when you join their Family Caregiver Community. Their free resources for those who sign up include monthly e-letters, quarterly newsletters, and educational brochures. Use the link above to access NFCA resources, as well as their list of additional recommended resources.

This is the government’s link list to a variety of resources to meet your caregiving needs. The website offers resources on a number of caregiving topics, such as finding care help, accessing government benefits, legal matters and end of life issues, long-distance care, and support for caregivers. It’s worth your time to take a look at some of these government resources so you’re educated about the benefits available to you and your loved one. Caregivers will also find the comparison tools and checklists especially useful.

Caregivers can utilize the short, easy-to-read articles on the Caring Connections website when planning ahead or while caring for someone. The site is easy to navigate and will help you realize the different issues that might arise while caring for someone as well as help you determine the different financial, legal, and health needs of your loved one.

Caregivers of aging adults should be aware of the individual’s current Medicare benefits, changes to Medicare, and investigate any potential benefits that the individual isn’t utilizing. Use the government’s Medicare.gov site to educate yourself about benefits, find health and drug plans, providers, or to replace a lost or incorrect card. Spend some time exploring the Medicare website to discover all of the information and resources available to you and your loved one.

Compiled by Carrie Bui, Communications Specialist