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.

Monday, December 31, 2012

Resolution: Make Your End of Life Wishes Known

Today's the day. As you reflect on the past year and make a few resolutions for the new year, we have one more resolution for you to make.

Discuss your end of life wishes with your loved ones. Choose a medical power of attorney. Fill out an advance directive. If you've already done these things, resolve to review your advance directive and update it if necessary. Make this the one resolution you fulfill in 2013.

How should you start the conversation? Gather your loved ones around a table--your spouse, your children, close friends, your parents. Have a few blank advance directive documents on the table. The Casa de la Luz Foundation can provide you with hard copies of the Five Wishes, or you can download your state advance directive document from Caring Connections. Have a few pens handy.

Print out an additional resource, such as the starter kit from The Conversation Project or the slide from Engage with Grace's One Slide Project. Either of these projects will help you answer questions such as, "What kind of medical interventions, if any, do I want at the end of life?" and "Who do I want to make healthcare decisions for me, or to advocate for me, if I am unable to speak for myself?"

Some of your family members might be hesitant at first. Some of them will tell you to stop being morbid. Encourage them to not be afraid. Tell them you just want them to be prepared and to have the resources they need when the time comes. Today's the day.

Casa de la Luz Foundation is a nonprofit foundation whose mission is to acquire and dispense funds in support of end of life care within the Tucson community. The Foundation provides free copies of the Five Wishes, an advance directive document, to the community. Request your copy today.

By Carrie Bui, Communications Specialist

Friday, December 28, 2012

Friday Five: Caring For Others

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

1. We're a little biased, but we love this video story from our nurse Carrie Landau. She shared it a while back with Hospice Action Network, and we love hearing about how patients benefit with the support of a hospice team member. Thanks to Carrie and all the other hospice nurses out there caring for patients at the end of life.

2. This blog post, "At the end of life, never underestimate the power of a map," on popular medical blog site, kevinmd.com, is a great story of why patients, families, and physicians need to have open and honest conversations about health status and prognosis. The end of life is an unfamiliar journey, and our patients and families rely on us to guide them through this journey. And, that honesty is what will give more individuals the opportunity to experience the end of life according to their personal wishes.

3. If you're just beginning the journey of caring for an elderly or ill loved one, you might appreciate this Prepare to Care resource guide from AARP. The guide is a downloadable pdf and is split into five sections: Start the Conversation, Form Your Team, Make a Plan, Find Support, and Care for Yourself. While you're on the AARP site, you might consider poking around the Caregiving section to find additional resources.

4. Support groups can be helpful resources for individuals living with an illness or for family caregivers. It can be therapeutic to share your experiences with others who are in a similar situation, and perhaps share helpful suggestions or other resources. However, due to illness or caregiving responsibilities, it can also be difficult to meet with a group in person. Our online support group directory offers a list of ways you can still receive the support of other individuals on your own time schedule.

5. Articles about family caregivers often focus on either the good or more often, the bad. This CNN article, "Caregiver lives rerouted yet enriched by aging parents" provides both perspectives on family caregiving. It's a reminder that there are pros and cons to family caregiving--exhaustion, financial constraints, but also the opportunity to connect with one another.

Wednesday, December 26, 2012

The Wednesday Image: Wildcat Family

Wildcat Family sculpture at The University of Arizona
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, December 24, 2012

What to Expect During a Hospice Evaluation

Perhaps your loved one has stopped responding to curative treatments. Or maybe you've noticed a decline in his or her health. You have a basic understanding of hospice care, and you and your loved one have made the decision to learn more about the extra support hospice providers offer during this phase of life.

Here's what you can expect when you call the hospice to set up an evaluation for your loved one.

When you call the hospice to set up a meeting, they will ask for the patient's full name, the patient's address, and they may request contact information for the patient's medical power of attorney. The hospice may also request the patient's Medicare or Social Security number and the name of his/her physician. They will want to know where patient is currently, whether they are at home, in a facility, or in the hospital. Then, the hospice will set an appointment for a representative to meet with the patient and family or MPOA.

The hospice representative will meet with you and your loved one, at home, in the hospital, or at an assisted living or skilled nursing facility. He/she will ask for information about the patient's diagnosis, symptoms or discomfort the patient is experiencing, current medications, and a brief health history. This information is used to determine if the patient is eligible for hospice.

Casa de la Luz uses Medicare Hospice Benefit guidelines to determine patient eligibility. In order to qualify for hospice services, two physicians must certify that an individual is terminally ill with six months or less to live, if the illness runs its normal course.

The representative will also explain hospice services and answer any questions you might have. If the patient and family choose to sign up with hospice, the representative will walk you through signing the hospice election forms. There is no cost for this meeting, and no obligation to sign up with services at the end of the meeting.

Individuals can also choose to end, or revoke, hospice services at any time by signing a revocation form. After revocation, individuals can re-elect the hospice benefit again, assuming they meet the criteria for eligibility. Also, it is not uncommon for a patient's health to improve while on hospice, and then he/she should be discharged off of hospice services.

The end of life is a sensitive, emotional time. You want to choose a hospice provider who can respect and support yours and your loved one's needs. The goal is to offer your loved one comfort, peace, and dignity in the last months of life. To learn more about hospice care, contact your physician for a referral, or visit the Caring Connections website to locate a provider in your area.

By Carrie Bui, Communications Specialist

Friday, December 21, 2012

Friday Five Offers A Little Extra Inspiration

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

1. Have you heard that today is the end of the world? Okay, probably the world's not ending today, but what if it were? What if this were your last day on earth? What would you regret? This is a great article about the top five regrets of the dying. We found the regrets to be both enlightening and inspiring.We want to know, what would you regret, and does this list make you want to change the way you're living your life?

2. This article was more of a resource piece we wanted to offer to individuals who might be struggling with a serious illness or to the caregivers of those individuals. Most of us aren't prepared for a serious illness, and suddenly we're bombarded with information about diagnosis, prognosis, treatment options, side effects. Help yourself by having these questions to guide you in the decision making process.

3 & 4. Are you on Twitter, or perhaps do you watch Ann Curry of NBC News? After the Newtown tragedy, Ann Curry wondered what we as a nation could do in response to the shooting. She shared an idea on Twitter, to commit to 20 acts of kindness for each of the children killed in Newtown. That idea went viral, grew larger, and now individuals across the country have committed to performing 26 acts of kindness. There's still so much good in our world. If you'd like to follow what others are doing and news stories about this awesome viral idea, you can like the 26 Acts of Kindness page on Facebook.

5. If you are grieving the death of a loved one, know that your feelings are normal. You may experience a variety of strong emotions including anger, sadness, and confusion. This article offers a few great suggestions to help you with your grief. Do you have more suggestions for individuals who are grieving? Leave a comment below with your suggestion.

Wednesday, December 19, 2012

The Wednesday Image: We Are Family

Cancer Survivors' Plaza at Reid Park, Tucson, AZ
Image taken July 2012 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, December 17, 2012

Debunking Myths About Hospice

Myth: Hospice is only for the last few days of life.

The National Hospice & Palliative Care Organization reports that 35.7 percent of hospice patients died or were discharged from service within seven days of admission in 2011. Could this be because many individuals believe hospice care is only available to patients who are in the last few days of life? Well, let us clear this myth up, and assure you it is decidedly untrue.

The Medicare Hospice Benefit guidelines state that a patient is eligible for hospice if two physicians certify he/she has six months or less to live, if the illness follows its expected course. This six months or less guideline means a hospice can provide care, support, and education to patients and their loved ones for months instead of days. And, because illnesses are not always predictable, some individuals might remain on hospice for longer than six months, as long as the hospice physician or nurse practitioner certifies that a patient's health is still declining and he/she is still dying. During these final months of life, the hospice team visits the patient regularly to help manage and control symptoms, explains the dying process, helps organize final arrangements, and provides counseling at the end of life.

Myth: Hospice is a place you go.

It's not uncommon to hear an individual say something like, "when my husband went to the hospice" or "when mom was at the hospice," and then people begin to assume that hospice is a place you go to die. Confusion also occurs because many providers also have a residential hospice home or an inpatient unit. However, most hospice patients are cared for in their place of residence, the place they call their home. Hospice is not a place you go, but a holistic philosophy of health care. Hospice emphasizes whole-patient care, treating medical, emotional, and spiritual needs at end of life. It is patient-centered care, designed to give patients comfort and dignity at end of life, and it is designed to do that within the patient's home.

Myth: Hospice means you're giving up hope.

Choosing hospice does not have to mean that you're giving up hope. As we move through life, our goals, wishes, and hopes change. This remains true even as we move toward the end of life. A hospice patient can hope to live until the end of his life in the comfort of his home; a patient might choose for her last months of life to be surrounded by loved ones and under the care of compassionate individuals; children will hope for their mother or father to have a better quality of life at end of life. We as hospice workers hope that we can fulfill our patients' needs and support a patients' loved ones through the end of life journey.

If you or someone you love has a terminal illness and would like more information about hospice care, visit NHPCO's Caring Connections website and click Find A Hospice to find a provider in your area.

If you are in the Pima County area and seeking information about hospice care, contact Casa de la Luz Hospice at 520-544-9890 to schedule a no-cost evaluation.

Friday, December 14, 2012

Friday Five: Links That Inspire

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

1.  They say when you're in polite company, one of the topics you shouldn't discuss is money. But even if you don't talk about it, the issue still exists, and now, it's put us in a pickle. We spend a significant amount of money on care at the end of life, and it's not even the kind of care most individuals would choose. Learn a little more with this CNN Money article about "Cutting the high cost of end of life care."

2. This is a wonderful video about end of life care that was recently on Rock Center with Brian Williams. Have we ever mentioned LaCrosse, Wis. to you? We've read about them often because of their amazing advance directive rates. This is a town that knows the value of the conversation, and why individuals should outline their end of life wishes. Watch this video with your loved ones today to spark your own conversation about what you want at the end of your life.

3. We loved this TEDx Tampa Bay video featuring Kathleen Taylor, a mental health counselor with hospice experience. We found her presentation moving, inspiring, and easy to watch. She doesn't ask you to consider how you want to die, but how you want to live before you die. If you do nothing else, just watch Rethinking the Bucket List.

4. We're so amazed at how the Internet is able to bring us closer to so many good writers and compelling stories. We discovered Arthur & Bernie a while back through Laura's AARP guest pieces. This is a great blog as Laura shares stories of Arthur, her elderly friend, and Bernie, her grandfather.

5. Because statistics show that family caregivers tend to be women, then a lot of articles tend to be geared toward female caregivers. That doesn't mean there aren't male caregivers though, and sometimes they have a different perspective on caregiving. So for all the male caregivers, this link's for you, "What's a guy to do? Four suggestions for better caregiving."

Wednesday, December 12, 2012

The Wednesday Image: Lakeside Calm

Silverbell Lake, Tucson, AZ
Image taken by Crystal Cannon

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, December 10, 2012

When Is It Time To Call Hospice?

It's not uncommon for us to have patients on our service for just a few days. The hospice referral often comes late, for any number of reasons.

A late hospice referral always saddens us because we wish we could have had more time to assist the patient and their loved ones. And, we know from surveys that families say, "We wish we had known about hospice sooner."

But how do you know when the right time to call hospice is? Are there certain signs or symptoms you should be looking for as you're caring for your loved one?

Here are a few questions we recommend asking yourself to help determine if it's the right time to set up a hospice evaluation. If you can answer yes to at least a few of these questions, contact a local hospice in your area today. To locate a hospice, visit NHPCO's Caring Connections and click Find A Hospice.

  1. Is your loved one losing weight?
  2. Is your loved one losing interest in food?
  3. Is your loved one sleeping more or most of the time?
  4. Is your loved one losing interest in the world around him or her?
  5. Is your loved one decreasing interaction with their loved one?
  6. Is your loved one experiencing a decreased ability to move around?
  7. Is your loved one falling often?
  8. Is your loved one experiencing an inability to perform the tasks of daily living?
  9. Is your loved one becoming weaker?
  10. Is your loved one requiring increased visits to the ER for chronic health issues?
  11. Has your loved one expressed that he/she no longer wishes to go to the hospital or ER?
  12. Is curative treatment no longer an option, or has your loved one declined to continue treatments for his/her illness?
Casa de la Luz Hospice has been providing hospice services to the Tucson community since 1998. Our mission is to provide superior care to patients and their loved ones, so that they may complete their mission on this earth in comfort, dignity, and harmony. To learn more about how we can assist you and family, call our office at 520-544-9890.

Friday, December 7, 2012

Friday Five: References, Resources, and a Story to Warm the Heart

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

1. While we're so happy more people are learning, understanding, and utilizing hospice services, we're disappointed that so many patients are only receiving care for about a week. NHPCO reported that 35.7 percent of hospice patients died or were discharged within 7 days of admission. "We need to reach patients earlier in the course of their illness to ensure they receive the full benefits that hospice and palliative care can offer," said Don Schumacher in this NHPCO press release.We couldn't agree more.

2. We love a good hospice story, and a good veteran story, and this is both. Veteran gets medals again is just a happy article about a veteran whose hospice team helped him recover two medals he received during his time in the Navy. Way to go Hospice of the Valley and Operation American Patriot for being able to give this individual such an amazing gift near the end of his life.

3. Here was another great piece about the importance of end of life care talks and decision making, "Making decisions on end of life care." It's got a little more detail than most op-ed pieces, clearly defining some of the life-sustaining procedures that individuals can opt for or out of within their advance directives.

4. We're not endorsing the product mentioned within this piece, but we appreciated the nicely done infographic. It's a great quick hit of caregiver statistics told in a powerful way.

5.  In Arizona it's not uncommon to hear stories of individuals who have children acting as long-distance caregivers. Your mom and dad retired to a warmer climate, you stayed in the big city because of your career, your family, the faster-paced lifestyle. But, as parents age, and then health begins to decline, being far away becomes difficult. How can you make sure they're taking care of themselves? Start with this handbook, "Handbook for Long-Distance Caregivers," from The Family Caregivers Alliance, and remember to take full advantage of the resources available to caregivers.

Wednesday, December 5, 2012

The Wednesday Image: Horizon

Arizona Hops & Vines, Sonoita, AZ, July 2012
Image taken by Carrie Bui

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, December 3, 2012

How to Cope with Grief & Loss During the Holidays

The holidays can be an especially difficult time for those who have experienced the death of a loved one. It is a time that emphasizes family and loved ones, and can be full of memories, traditions, and family heirlooms. In addition to the joy that seems to fill the season, it can also be a busy and stressful time. It seems like there is just more to do during the holidays. If you are struggling with grief this season, keep these things in mind.

Look for ways to reduce your stress level. Make your gift shopping easier by doing it online or via a catalog. Don't push yourself to attend every holiday function. It's OK to say, "Thank you for the invitation, but I won't be able to attend this weekend." Don't be afraid to ask for help from friends and family, and be honest about what you feel up to doing. If you aren't up to making Christmas Eve dinner and Christmas morning brunch, ask another family member to take over one of the meals or turn it into a potluck.

It may be hard to face an old tradition without your loved one. Allow yourself to create new traditions. Know that it is OK to do something differently. Your life has changed, and your traditions can reflect that. Take some time to sit down with your family members and go over your holiday traditions and tasks. Can the responsibilities be divided? Are there tasks that you can let go of this year?

Seek opportunities to honor your loved one's life and memory. Perhaps you might light a candle in their honor, or you can make a special ornament to hang on the tree for him/her. When your family is gathered around the dinner table, maybe each person would like to share a memory of the individual. Take this season as an opportunity for shared remembrance.

Compiled by Carrie Bui, Communications Specialist