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.

Friday, August 31, 2012

Friday Five For Family Caregivers

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

1. Caregiving for an aging or ill loved one isn't something we all instinctively know how to do the first time we do it. For most of us, it's not something we train for. But, your mom and dad are getting older, and you can see them relying on you more often (even if they won't admit it.) You're worrying more, and you're calling more, and slowly but surely, you're headed down the path of family caregiver. Within the AARP Caregiver Resource Center, you'll find their Prepare to Care: A Resource Guide for Families. It's a downloadable pdf guide that outlines five steps to help you begin the caregiving journey.

2. Caregivers are often told to take care of themselves, but many are overwhelmed with responsibility and can't find the time to focus on themselves. While we do encourage family caregivers to utilize other family members, close friends, neighbors, or other members of your loved one's community, we know some days that's easier said than done. On those days, think about employing one of these five-minutes de-stressers for family caregivers.

3. Speaking of taking care of yourself, you also need to be able to recognize when you're burnt out. When we disregard our own needs in sacrifice for others, we run the risk of caregiver burnout. Are you asking yourself how you're doing today and answering honestly? Check in with yourself right now, and then do it on a regular basis. As you're doing that, keep these six signs of caregiver burnout in mind.

4. It's good to have a friend around when you're dealing with caregiving issues. It might be even better to have a lot of friends around who have been caregivers, too. Support groups offer individuals an outlet to share feelings and ask for advice from other individuals who are going through the same thing. Because caregivers have little time on their hands, online support groups can be especially helpful with their ongoing conversations and 24-hour accessibility. Sites like Caregiving.com can connect you with other caregivers like yourself so you can find support for you and offer support to others.

5. Most family caregivers will spend years providing care to an aging, chronically ill relative. "The average duration of a caregiver's role is 4.6 years," according to the Family Caregiver Alliance. That's a long time to live one's life in a specific role. It's okay to feel a little lost after your loved one's death, as you grieve their death but also try to figure out who you care and who you can be without your caregiving responsibilities. Join the AfterGiving.com community, meant for caregivers transitioning to life without caregiving.

Wednesday, August 29, 2012

The Wednesday Image: Reflection

Image taken by Nancy James
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, August 27, 2012

Dying in America: Ensuring the Best Care Possible

Leading hospice and palliative care physician and bestselling author, Dr. Ira Byock returns to Tucson as the keynote speaker for the 12th annual Casa de la Luz Foundation End of Life Conference on Friday, November 9 at St. Philips in the Hills Episcopal Church.

 “We make dying harder,” states Dr. Byock. “We all want the best care possible for ourselves, our spouses, parents, for our patients. One size doesn’t fit all.” During his keynote presentation, Dr. Byock will expand on how the healthcare community needs to respond in newer and more innovative ways to change how we treat serious and chronic illness.
The theme of this year’s conference is Dying in America: Ensuring the Best Care Possible. Each year, the Foundation conference seeks to address the state of death and dying in America by creating a space for open dialogue and educating the community about issues at end of life.

“There is no greater voice for compassionate end of life care in our country than Dr. Ira Byock,” said Frank Williams, conference chairperson and Casa de la Luz Foundation board member. “Dr. Byock’s quest to transform care through the end of life speaks to one of the major concerns we have today in our society.”
Dr. Byock is one of the foremost palliative care physicians in the country and professor at Dartmouth Medical School. He argues that how we die is among the biggest national crises facing us today and has been a consistent advocate for the voice and rights of incurably ill patients and their families. He is the author of bestselling books, Dying Well, The Four Things That Matter Most, and his most recent, The Best Care Possible, as well as numerous published essays. He has also been featured on Nightline, Talk of the Nation, The NewsHour, and he and his team were featured in November 2009 on CBS’ 60 Minutes, in a segment, “The Cost of Dying,” which won a Peabody award for journalism.

Experts in the field of death and dying will host morning and afternoon workshops for conference participants. The one-day conference is open to healthcare professionals, caregivers, volunteers, and community members interested in improving end of life care. More than 200 attendees are expected to attend this year’s event.
Funding for the 12th Annual End of Life Conference was provided by the Community Foundation for Southern Arizona through the Shaaron Kent Endowment Fund as well as additional sponsors and private donations.

To register for the Thursday evening seminar or the Friday all-day conference, go to www.casafoundation.org or call 520-544-9890. Early reservations are recommended as space is limited.

Friday, August 24, 2012

Friday Five: Planning Ahead, Making Decisions

The Friday Five is our weekly roundup of links to smart articles and helpful resources across the Web. This week, we're focused on making end of life decisions.

1. It's wonderful to see the statistics each year and realize that more individuals are taking advantage of hospice and palliative care programs and services. The downside of that, however, as this American Medical News article points out is that we need more physicians to meet the demand for services. "More doctors sought to meet hospice and palliative care demands" is an interesting read for healthcare professionals, and we can only hope that it encourages individuals to consider hospice and palliative care as a specialty. Every individual deserves the best care we can provide them at the end of life.

2. Last week we linked you to an article about ABC News teaming up with The Conversation Project to encourage more discussion among family members about end of life issues. This week, we're going to link you to Engage with Grace, which promotes something they call The One Slide Project. Their goal is similar: "To help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we lived them." This is great because they present individuals with five simple questions, and hopefully, through answering the questions, spark a conversation about end of life goals and wishes.

3. If you're getting ready to try and formalize your end of life care decisions on paper, you might find this End of Life Decision-Making Guide from the Family Caregiver Alliance useful. It does a great job of defining terms, laying out care options, and helping you understand the role of your healthcare power of attorney. It's a thorough article, but worth the time spent reading and understanding it.

4. Though we all should plan for the end of life, we also know that sometimes we change our minds or sometimes our decisions are determined by our circumstances. Today, one of the biggest challenges for families is a loved one with Alzheimer's disease. In this case, the Alzheimer's Association offers information about planning the end of life for families dealing with Alzheimer's. The "End of Life Decisions" booklet can help you understand what decisions need to be made, and help guide you through some of the questions you might have to answer. It's a great resource that you should look at sooner rather than later.

5. And, finally, since we're talking about asking questions and making decisions, we found this great list of downloadable pdfs from the American Cancer Society about Questions to Ask Your Doctor. The really neat  thing about this list is that the pdfs are for specific types of cancer. Use these questions to help guide you when discussing diagnosis, treatment, and medication options.

Wednesday, August 22, 2012

The Wednesday Image: Cactus in Bloom

Cactus in bloom
Image taken by Crystal Cannon
Hospice care teaches us not only how to approach death with dying, 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, August 20, 2012

Helping People Through Illness and Loss

“We cannot all do great things, but we can all do simple things with great kindness.” Mother Teresa

Years ago I read a story in Reader’s Digest about shining shoes. Since then, the story has helped me to be a better person and a better friend. 

The author’s relative had died suddenly, and the family was in the chaos of travel preparation. In the midst of that activity, a neighbor stopped by and offered to shine their shoes. Surprised, and a bit puzzled, they accepted.
Parents and children continued in a whirlwind of grief and packing. Off to the side, the neighbor quietly gathered travel and funeral shoes. He carefully cleaned them, gave them a good polish, and wrapped the ones bound for a suitcase. Then he left. 

Later, the author remembered this simple act of kindness for several reasons. It was a caring action. It put no demands on the family. It took care of a detail they for which they had no time.  It allowed a quiet and peaceful presence to enter their home in the midst of chaos. And it demonstrated the neighbor’s support in their time of need.

Usually, when someone is ill or has just died, we offer “to do anything I can to help.” In this case, the neighbor went beyond offering “anything.”  He observed the families’ needs and offered a service that he could provide while the family continued doing what they needed to do. 

It also reminded me of my family’s experience. My brother and I, ages 3 and 4, had been hit by a car in our front yard, but not seriously injured. (It’s a long story.) I remember sitting on my mother’s lap as the neighbors appeared. They found a pediatrician who would see us right away. They held the baby, washed the dishes, folded the laundry, and cooked dinner. No one called to offer sympathy; they showed up and took care of us.

When a friend is in need, look at their life and offer a particular service. Let your friend know that when you help them, you feel less helpless in the face of their hardship. Tell them it is an honor to be allowed to do something for them.

Here are some suggestions on helpful tasks to support a caregiver or an individual grieving the death of a loved one.

  • Offer the caregiver a couple hours of respite.
  • Do chores around the house: laundry, weeding and gardening, cleaning the house.
  • Make a healthy meal, or make several healthy meals that can be stored in the freezer. Prepare individual-sized meals, as opposed to large casseroles.
  • Babysit any young children in the family by taking them out of the house and for an outing to a local children’s museum, a park, or a ball game.
  • Run errands: grocery shopping, dry cleaning, returning books to the library.
And remember, hugs are wonderful, but they don’t fold diapers. 

By Mary Toren, RN

Friday, August 17, 2012

Friday Five Reads About Caregiving & End of Life Decision Making

The Friday Five is our weekly resource of smart articles and helpful links for healthcare professionals, family caregivers, and individuals facing the end of life.

1. We love the discussion and stories that are shared on KevinMD.com. It's a great resource for healthcare professionals and individuals interested in joining a healthcare discussion. We read a powerful piece this week from Dr. Monica Williams-Murphy, an emergency physician and author of the book It's OK to Die. We need to be presenting families with all of the options available to them, and offer them the guidance they might need to make these difficult end of life decisions. "We have kept Daddy out of heaven with what we have already done" is a really lovely story about accepting death and letting go of a loved one.

2. It was great to read the announcement this week about the new public service campaign to increase the nation's awareness of the millions of unpaid family caregivers in our midst. The ad campaign comes from the Ad Council and AARP, and the goal is to direct caregivers to resources that can help them. Learn a little more about caregiving in the U.S. and the ad campaign from this Washington Post article, "Aging America: New public service ad campaign provides roadmap for caregivers crying for help."

3. It's inspiring to see a national news organization partner with a group to encourage discussions about end of life care. That's exactly what's going on between ABC News and The Conversation Project. Their partnership is meant to spark a national conversation in families about what each individual would want at the end of life. Learn more about the partnership from this article, "The Conversation Project Shifts to End of Life Care."

4. If you're a family caregiver, you're not alone! The Internet offers a wealth of information and resources for family caregivers, but it also offers a spot for family caregivers to connect and share with one another. Often, the people who understand what you're going through best are the ones who are also going through the caregiving journey or have already gone through it. Read Mama's Keeper, written by a woman providing care to her grandmother.

5. With all this talk about end of life care and the caregiving journey, do you have questions about available resources? Hospice care is available to individuals with a life-limiting illness who have six months or less to live. It's a covered benefit from Medicare, and frequently under-utilized. Educate yourself today about hospice care so that you know what's available to you when the time comes. A good place to start is the frequently asked questions portion of our website. Take your time navigating through our site to learn more about our hospice program for Pima County residents. To find a hospice provider in your area, visit the National Hospice and Palliative Care Organization site.

Wednesday, August 15, 2012

The Wednesday Image: History of a Saguaro

Saguaro cactus, Catalina State Park
Image taken by Sally Saunders

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, August 13, 2012

Finding Grief Support

Where there is loss, there is grief.  Where there is grief, there is mourning.  Grief and mourning go hand in hand.  Grief is a very personal thing involving many emotions and feelings unique to each loss.  Mourning involves the actions we take to express those feelings. 

Although each person’s grief is unique to them, many commonalities exist.  “I feel like I am going crazy. I can’t focus on anything.  I’m so lonely. I’m so tired. It doesn’t seem real,” are all common phrases shared by people who have lost a loved one.  Some people show no outward signs of grief or mourning while others are extremely emotional, showing intense grief.  Whether or not one grieves outwardly or not, he/she grieves nonetheless.  How an individual expresses grief is simply about how he/she processes life in general. 

Most grieve in a way that is best matched for their personality or their relationship with the deceased.  Some process by introspection, quiet, meditation, pondering life with the one who died.  Others find comfort in talking with others, joining a group, sharing their emotions with others and verbally processing their loss rather than keeping it to themselves.  There is no right or wrong way to grieve.  Everyone’s grief is unique, and each person grieves in their own way and in their own time.

There are many barriers to healthy grieving.  One of the greatest is our society’s “mourning avoidant” culture, that we will “get over it” if we just stay busy.  Other barriers include lack of support from family and friends, family dynamics, cultural background, and past coping methods.   That being said, there are support systems available to those who are grieving the death of a loved one.  Being aware of the basic needs of those who are grieving is a necessary part of those systems.

Support groups help grieving people by introducing them to others who have had similar experiences, thoughts and feelings, giving them validation.  They provide emotional support in a safe and nonjudgmental environment.  Opportunities to learn about the grief process and new ways of approaching problems are presented.  Sometimes acute mourners desperately and immediately need a lifeline provided by a group.  Many people are not ready for a support group experience until at least three months or more after the death of a loved one.  It has been shown that drawing on the experiences and encouragement of friends and fellow grievers is of great value in the healing process.

Group settings are not for everyone.  Some people are more comfortable sharing at individual counseling sessions.  Many grievers are not ready to openly share their emotions with others and may benefit from individual sessions with a bereavement support person prior to or in lieu of a group experience.  People with complications or a history of emotional problems may be better helped by individual counseling.   This counseling experience may increase the griever’s comfort level to then participate in a grief support group.

Both support groups and individual counseling provide some of the basic needs to grieving people by providing an environment where they may feel accepted, listened to, validated, understood and educated on the grieving process.   These support systems offer a safe place for people to do the necessary work of mourning - talking, crying, writing, and sharing.   They encourage participants to reconcile their losses and go on to find continued meaning and purpose in life and living.  Participation in groups or counseling often brings comfort and understanding beyond many people’s expectations.

“You don’t heal from the loss of a loved one because time passes,
you heal because of what you do with the time.”  -Carol Crandell

Casa de la Luz Hospice offers grief support groups to the public free of charge. For information about our Tucson grief support groups, and to register, call us at (520)544-9890 or e-mail us at info@casahospice.com.

By Meg Anderson, Bereavement Coordinator

Friday, August 10, 2012

Friday Five: The Cost of Being a Caregiver

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

1. We were very proud to have the executive director of the Casa de la Luz Foundation on a local talk show this week discussing the foundation's upcoming end of life conference and the importance of having the end of life discussion. Carol Clark gave a great interview on Tucson Morning Blend, and we were so excited to be able to share the message about the value and importance of end of life care.

2. Here's a nice blog entry we stumbled upon about making the decision to move your aging parent into your home. Aging Parents: Should You Move Mom or Dad In? can help you pinpoint the questions you should ask yourself before making this life-changing decision. It's important to think about from all angles, financially, mentally, and medically. It also reminds us the importance of planning ahead. It's much easier to follow an existing plan when in crisis, than to come up with a new plan during a crisis.

3. To follow up on the previous blog entry, read this article from Time magazine about the potential costs of an elderly parent moving in. Like many aging and elder-related articles these days, it's written by someone who's already thinking about the issues for their own personal life. "Is Your Elderly Parent Moving In? It Might Cost You" provides a handy checklist of questions for you to think about and to guide your discussion with your spouse and parents.

4. If having your elderly parent move in isn't the right option for your family (and it's OK if it's not), this long-term care calculator can help you estimate the cost of care in your state. The calculator is a tool from the National Clearinghouse for Long-Term Care Information, and their website offers some great information for understanding, planning, and paying for long-term care.

5. If you are a family caregiver in Arizona, support might available to you from the Family Caregiver Support program. It is a federally funded program that offers support services to family caregivers. To be eligible, you must be caring for an individual over the age of 60 or you are over age 55 and caring for a child under age 19. There are some specific eligibility requirements depending on which situation you are in and the assistance you are seeking. Read the Arizona Family Caregiver Support FAQ or contact your local area agency on aging.

Wednesday, August 8, 2012

The Wednesday Image: Blooms

Tucson Botanical Gardens
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, August 6, 2012

Three More Things to Know About Hospice Care, Part 3

Read Three Things to Know About Hospice Care, Part 1 and Part 2.

Patients on hospice care have opted for comfort care only, and forgo curative treatments.

Patients often choose hospice care when they decide curative treatments are no longer the right care option. This may be when the patient stops responding to treatment, or the side effects of treatment worsen the patient’s quality of life. In order to utilize hospice care, patients are required to end any treatments intended to cure the terminal illness. The care emphasis of hospice is comfort, managing patient symptoms and helping the patient experience a greater quality of life at the end of life. Hospice patients have the right to end hospice care at any time.

Medicare continues to cover the costs of health care needs that are not related to your terminal illness.

Your hospice benefit will cover your needs related to the terminal illness. Any services you receive not related to the terminal illness will continue to be covered by your regular Medicare plan. Your hospice team can help you determine what will be covered by the hospice benefit and what won’t.

You have the right to change hospice providers once during each benefit period.

Just as you have a choice in your hospice provider, you have the right to switch hospice providers. When you sign onto hospice, the physician certifies you’re eligible for a period of time, referred to by Medicare as your benefit period. Each eligible patient is signed on for an initial 90-day period and can be re-certified for a second period of 90 days. After the second 90-day period, the physician certifies you for hospice in 60-day periods. 

Every patient has the right to change hospice providers once per benefit period. During this sensitive and emotional time of life, you have the right to choose a provider who will give you the support and care that is right for you. Refer to our article, “How to Prepare for your Hospice Evaluation” and Caring Connection's  Choosing Hospice document to help you choose a hospice. To locate a hospice provider in your area, visit the National Hospice and Palliative Care Organization's website for a directory of providers. If you are in Pima County and in need of hospice services, please call our office at 520-544-9890.

Information compiled from Medicare Hospice Benefit booklet. Click here for a pdf of the booklet.

By Carrie Bui, Communications Specialist

Friday, August 3, 2012

Friday Five Focuses on Resources to Aid Elder Care

The Friday Five is our weekly roundup of links to smart articles and helpful resources about hospice and family caregiving.

1. The Family Caregiver Alliance has a wonderful blog for family caregivers. Take a few minutes to read through past entries, and then bookmark the site so you can continue to follow along. The Alliance blog is very good at addressing issues that affect caregivers, from the practical to the emotional.

2. We enjoyed this article in The Huffington Post about how seniors are embracing online media to stay connected with their loved ones. Elder Care: The (Virtual) Word is Your Oyster offered some great insight as to how seniors can use new social media tools to stay in touch with loved ones who are far away or if the senior is less mobile. There are some great suggestions at the end about elderly bloggers and online communities.

3. Do you have questions about what to do when your loved one has cancer and could be facing the end of his/her life? This is a comprehensive fact sheet from the National Cancer Institute about end of life care for people who have cancer. It's a great piece about what to expect and also includes helpful tips and tools. If you have further questions, or would like additional assistance, call your area hospice.

4. If you have become one of the millions of caregivers caring for a loved one with Alzheimer's or dementia, then we're sure you'll enjoy following this blog from the Alzheimer's Association. The Alzheimer's Association blog features caregiver stories as well as up-to-date information regarding Alzheimer's and dementia research and advocacy.  

5. If you or your loved one is living with a serious illness, consider following our monthly e-newsletter. Subscribe to have the newsletter sent to you via e-mail every month, or visit Living with Serious Illness. Within each month's newsletter you'll find helpful information for caregiving, dealing with practical matters, and balancing your emotional health during this difficult time.

Wednesday, August 1, 2012

The Wednesday Image: Desert Oasis

Oasis in the city
Gene C. Reid Park, Tucson, AZ
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.