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, November 30, 2011

The Wednesday Image: Bear down, Arizona!

Image taken by Brianne Pekar, The University of Arizona

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 featuring images that represent what we love and appreciate most about life in Tucson.

Monday, November 28, 2011

Hospice Volunteer Testimonial: Spiritual Nourishment

Hospice volunteer work is not about death. It is about life. It is about the moment, the hour, the time you spend serving. When I signed up to train as a volunteer, I did not know if I could do it. Our society does not spend much time, money, energy, or thought on our last days, thus my knowledge of the process was minimal. Having trained and experienced firsthand the process, feelings, and journeys of others’ ultimate passage has made me a much more thoughtful and wise person. My experiences have made me a better husband, father, and friend. What is really important has surfaced. My life has more value.
As my life and schedule have changed during my volunteering, people ask me if I plan to continue to volunteer, or if I have time to volunteer still. My answer is that I cannot imagine not volunteering. It is a part of me. It is an intricate part of my life--my spiritual nourishment. It is a great gift to me. My greatest hesitance or fear is that I am getting more out of it than I am giving.
Casa de la Luz has clearly put so much into their organization, and that makes me feel as I do about volunteering. The training is thorough, and the staff is superb. The best part of my day is when I meet someone and share that I am a volunteer at Casa de la Luz Hospice. There is usually a pause, a clarity in their eyes, as if refocusing, and then the conversation continues almost on a different level. They automatically know something about your heart and about who you are. They know you are real.
By Luis E. Perez, Volunteer

Friday, November 25, 2011

Friday Five: Caregiving, Listening, and Planning

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

1. Alzheimer's disease is exhausting--mentally, physically, and emotionally. How do you care for a parent who no longer recognizes you or manage the outbursts and wandering that can accompany Alzheimer's? AgingCare.com offers a new section on their website, The Caregiver's Guide to Alzheimer's Disease. Read articles and tips about the warning signs, how to tell family, how to control wandering, and more.

2. Speaking of guides, the Family Caregiver Alliance offers a pdf download of the Handbook for Long Distance Caregivers. Long distance caregiving isn't uncommon as families have spread out more. Aging parents decide to move to a warmer climate, or to a smaller city with a slower pace; children grow up and leave for bigger cities, new jobs, an urban lifestyle. Use this handbook to help you figure out where to start, how to pay for care, how to balance work and caregiving, and more. The checklist of care needs might be especially helpful in figuring out what you and your parents will need in terms of daily living and health assistance.

3. Today is the National Day of Listening, sponsored by StoryCorps. The National Hospice and Palliative Care Organization has made the National Day of Listening part of the celebration for National Hospice Month. StoryCorps encourages everyone to take the day after Thanksgiving as an opportunity to listen and record an interview with a loved one. Sharing our stories and recording them allows us to preserve memories and our legacies. Life review can be an important and emotional act, especially at the end of life. The National Day of Listening site suggests some great questions to help you get started.

4.Yesterday was a day to offer thanks for the blessings and the people in our lives. Hundreds of thousands of people in Arizona deserved special thanks yesterday. They are the estimated 850,000 unpaid family caregivers described in USA Today's article, "Unpaid family caregivers' work deserves applause." These caregivers are often part of what has been nicknamed the "sandwich generation." They are adults sons and daughters who balance caring for their families and their aging parents and work. If you know a family caregiver, please don't forget to offer them a few words of thanks.

5.The Associated Press had an article last week, "End-of-life documents not a huge concern for many boomers," and in it, a few baby boomers talk about how they feel healthy enough to not have a living will. Do you know any baby boomers like this--active, healthy, and not interested in filling out a living will? We try and stress constantly that even if they don't have need for one now, it's better to be prepared than when a crisis occurs.We believe filling out your advance directives is just about being prepared for the worst case scenario. Consider filling one out today.

Monday, November 21, 2011

The Wednesday Image: Keeping Watch

Image taken by Crystal Cannon, Arizona-Sonora Desert Museum

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 featuring images that represent what we love and appreciate most about life in Tucson.

A Thank You Letter to Family Caregivers, Hospice Professionals

In today’s entry I’d like to take a few minutes to recognize that November is both National Hospice & Palliative Care Month as well as National Family Caregivers Month. These two categories are actually closely intertwined, because hospice and palliative care patients and professionals rely on the attention, dedication, and sacrifice of family caregivers.

There are roughly 65.7 million caregivers in the U.S., caring for someone who is ill, disabled, or aged, according to the Family Caregiver Alliance.

Every day we meet families, terminally ill patients and their loved ones, in need. Our nurses, certified nursing assistants, social workers, and chaplains provide support to our patients and their primary caregivers. But an integral part of what makes hospice care such a beneficial service is the help of the primary caregiver(s).

It’s a common misconception that hospice care is around-the-clock care. In routine home hospice care, the hospice interdisciplinary team works with the patient and caregiver(s) to develop a plan of care, one that meets the patient's goals. The team then educates the patient and the patient’s caregiver(s) on the illness, caregiving, and the end of life journey. The hospice team makes regular visits to the patient, based on the care plan and the patient’s needs. An after-hours team is also available to support the patient and caregiver(s) if questions or a crisis situation occurs. Through this team approach, terminally ill patients can keep the option to spend their final months in the comfort of their own home. (Many hospices, including Casa de la Luz, have an inpatient unit option if symptoms cannot be managed at home).

I'd also like to recognize my fellow hospice professionals. I admire hospice workers for their ability to sit with families during such a difficult time, and I think we need to commend hospice workers for being able to openly face and discuss death and dying, a topic that most people try to keep an arm's length away. I can't think of anything more comforting at the end of life than the compassionate, expert care my colleagues provide.

Do you know a family caregiver or a hospice professional? Take a moment this month and let them know you recognize their efforts and their work. Today’s a good day to ask how they’re doing. 

Thanks to all of the family caregivers and the hospice care workers out there. I admire you.

By Carrie Bui, Communications Specialist

Friday, November 18, 2011

Friday Five: Helpful Links for the Aging

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

1. I love the New York Times' The New Old Age blog. The entries are so easy to read and always informational. This week Paula Span, one of my favorite contributors, writes about the conversation many doctors won't have with their patients. All too often, we see patients referred to us too late, or doctors who insist their patients are not hospice appropriate. The fact is, we all will eventually have to face the end of life, and it's much easier on everyone if we can have a say about what matters to us in the final months, quality of life or quantity.

2. Medicare Open Enrollment closes on December 7 so now's the time to finalize your decisions about your healthcare options. There's a handy Medicare Open Enrollment website that can help answer your questions.

3. We want to make sure family caregivers are finding the support they  need, and there's plenty of advice out there. In honor of National Family Caregivers Month, Psychology Today published a great article, Ten Tips for National Family Caregivers Month. There are six tips for caregivers, and then four tips for supports of caregivers.

4. Family caregivers are often thrust into the role of caregiving with little preparation and guidance. Know about the resources that are available to assist you and your loved one. Find information about Tucson resources on topics such as care management, financial assistance, support groups, and more on the Community Programs page of our Living with Serious Illness website.

5. Have you planned for what will happen as you age? The time to make decisions is before a crisis situation happens, so that all family members can be prepared and individual wishes can be followed. U.S. News and World Report reported in their blog, The Best Life, that Family Caregiving Needs Likely to Soar as our country's senior population continues to grow. Sit down with your family to discuss your potential needs as you age, and use some of the bullet points in The Best Life's entry to guide your discussion.

Wednesday, November 16, 2011

The Wednesday Image: Bobcat Neighbors

Bobcat strolling through a Tucson neighborhood
Image taken by Natalie Ronstadt

Monday, November 14, 2011

Honor Flight Network Experience

World War II was a dark time for our country.  Our very existence as a free nation was threatened.  At the end of the war more than 400,000 of our military had given their lives in order to preserve our freedom.  Many more came home with scars that would never heal – both physical and emotional, but they returned to their families, picked up their lives, and carried on.

Today, our World War II veterans are dying at a rate of 1,000-1,500 people per day.  Most have never seen the memorial in Washington, D.C. that honors their fight for freedom.

Honor Flight Network is a non-profit organization created solely to honor America’s veterans for their sacrifices.  Arizona is the 28th state to set up a hub and is part of the national network.  Their goal is to fly as many WWII veterans from Arizona to Washington, D.C. to see their memorial without any cost to the veterans. Priority is given to those who are disabled or terminally ill.

On Wednesday, September 21, I was once again honored and privileged to be a “guardian” and medical support on an Honor Flight with 30 World War II veterans from the Tucson area and approximately 20 guardians.

World War II Memorial, Washington, D.C.
Thursday was a full day with visits to the memorials for World War II, Vietnam, Korea, Iwo Jima, Women in the Military, and Air Force. We also watched with awe the changing of the guard at Arlington Cemetery.  I stood at the Korean War Memorial by one veteran with tears in his eyes as he recalled how alone and scared he had been during combat and remembered his fallen comrades.  Many others told stories of flying bombing missions or being hit by shrapnel.  Memories, once buried, came flooding back.  We guardians were there—to listen, offer comfort or just be with them silently.

Everywhere the veterans went they were greeted with applause and cheers, which again brought tears to their eyes – long awaited recognition for their service to our country.

With as many tears that were shed (by all of us) there was just as much laughter and camaraderie.  This is my second Honor Flight, and I am again amazed by the strength, determination and passion these folks have, both for life and country.  Most are in their late 80s and there were five over 90 years old on the trip.  My veteran, the only female, was a WAC and Captain – almost unheard of back then.  She will soon be 92. 

I am humbly honored to have been in their presence and feel so very fortunate to have taken this walk through history with them. The Greatest Generation?  Absolutely. This Honor Flight trip again reminded me why.

For more information on Honor Flight, go to www.honorflightsaz.org.

by Jana Davis, QAPI department

Friday, November 11, 2011

Friday Five: Caring for Veterans

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

1. Veteran's Day is a day to honor and recognize the men and women who have served and sacrificed for our country. Take a few minutes today to read this short fact sheet from the Hospice Foundation of America about Veterans & End of Life Care. Let's work together to better the care we offer to this unique patient population.

2. Here's an article from the Des Moines Register about how Iowa veterans volunteer to help veterans in hospice care. The shared camaraderie between a veteran volunteer and a veteran hospice patient can help create a safe environment for the patient to share their military experience.

3. The Department of Veterans Affairs has recently expanded their efforts to recognize caregivers of veterans. If you are a family caregiver for a veteran, visit the VA Caregiver Support website for information, resources, and to find your local Caregiver Support Coordinator. We recognize that family members and loved ones of veterans often make great sacrifices too.

4. We suggest that all veterans take the time now to register with their local VA. People in the Southern Arizona area can register with the Southern Arizona VA Health Care System. Did you know that every veteran enrolled in the VA system is entitled to hospice care paid for or provided by the VA, regardless of category or service connection?

5. Every day, hospices around the country are caring for people facing the end of life. Roughly a quarter of all deaths in the U.S. are veteran deaths. As services, people, and organizations around our country today recognize Veteran's Day, those of us in the hospice community need to remember that "Honoring Our Veterans Includes Caring for Them at the End of Life."

Wednesday, November 9, 2011

The Wednesday Image: First Snow

Snow dots the Catalina Mountains, Tucson, AZ, Nov. 2011
Image taken by Bob Ondercin

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 featuring images that represent what we love and appreciate most about life in Tucson.

Monday, November 7, 2011

Remembering Veterans

This Friday Nov. 11 is Veteran’s Day. On this day I ask that you take the time to remember our country’s veterans, the brave men and women who served in our military.

Did you know that Veteran’s Day actually started out as Armistice Day? The day recognized the ending of World War I fighting at 11 a.m. on Nov. 11, 1918, and Congress recognized it as a national holiday in 1926. Congress proposed changing the word Armistice to the word Veterans after World War II, and President Eisenhower signed the bill approving the change in 1954.

Now, each year Veteran’s Day is an opportunity to honor and recognize our nation’s veterans, for their hard work, their sacrifices, and their devotion to the military and the United States. 

I mentioned several entries ago that I am only just beginning to learn about veteran and military culture. In recognition of this week’s holiday, let me give you a little bit of the information I have already learned.

The projected veteran population from the Department of Veterans Affairs as of 9/30/2010 is 22,658,000, and 28 percent of all deaths in the United States are veteran deaths.

Last week, the Tucson community had the opportunity to listen to Deborah Grassman, a respected hospice nurse with 30 years of experience with a VA hospice in Florida. She wrote a book, Peace At Last: Stories of Hope and Healing for Veterans and their Families, and shared the experience and knowledge she’s gained in working with veterans at the end of life. Her presentation helps hospice professionals understand the varied perspectives veterans have, and in understanding how the war experience can help shape a veteran’s end of life journey. 

Within hospice, we’re seeing a lot of World War II veterans, as well as some Korean and Vietnam War veterans. Each war era left unique effects on its veterans. For example, World War II veterans were celebrated for their efforts. They are also at risk for infectious diseases, suffered frostbite, and were exposed to nuclear weapons. However, this was not the case for the soldiers who served in the Vietnam War. These veterans experienced a very negative atmosphere when they returned home, and many talk of the solitude of being a soldier in the Vietnam War. As a result, these veterans often suffer from significant mental health and substance abuse issues. 

These are just a couple examples of veteran experiences, and it should be noted that not every veteran suffers from these post-war issues. Grassman defines three possible trajectories for veterans after a war: successful integration, apparent integration, and not integrated. As professionals, we need to tread carefully to discover the trajectory that our patients are on. We need to continue to educate ourselves about this unique patient population, and strive to give them the good death each person deserves.

If you have the opportunity this week, if you know a veteran or just bump into one at the store, remember to say thank you for your service. 

By Carrie Bui, Communications Specialist

Friday, November 4, 2011

Friday Five for Family Caregivers

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

1. The National Hospice and Palliative Care Organization proclaimed November National Hospice and Palliative Care Month. Read their proclamation on the NHPCO website.

2. It's not easy being a family caregiver, especially as your loved one nears the final phase. This article, "Caring for Someone Who is Dying" from the Hospice Foundation of America, can offer some information and guidelines that can help you during this difficult time.

3. You know your parents can no longer live on their own. They need more attention, and your house is too small, and you work full-time, and you'd feel better knowing they're under professional eyes. But where do you start? The Assisted Living Federation of America can help give you a listing of facilities in your area and the Senior Living Options section will help you understand what you're looking for, and the questions to ask when choosing a community.

4. Do you know a video-savvy teen, a filmmaker to be, who has also been affected by Alzheimer's? The Alzheimer's Foundation of America has made it a goal to bring more attention to the fact that as more people suffer from Alzheimer's, the effects reach farther out into families, and ultimately, more and more teens. The AFA Teens division is launching their second video competition and inviting teenagers to submit video submissions about a moment in relation to Alzheimer's disease. Learn more about the competition at the AFA Teens website.

5. This is a wonderful written op-ed piece from the Helena Independent Record this week explaining why accepting hospice care does not mean giving up. This is a common reaction from most people; we can't help it. We're a nation that fears death, but being open to hospice care can give us the space to look at death in a whole new way, as a final phase, as a journey, as a peaceful process.

Wednesday, November 2, 2011

The Wednesday Image: Hidden Wonder

Caterpillar perches among the branches at Tohono Chul Park
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 featuring images that represent what we love and appreciate most about life in Tucson.