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

Friday, November 30, 2012

Friday Five: Links We Liked This Week

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

1. We have certainly seen how music can help comfort and heal individuals during the end of their life, and how individuals respond to the healing sounds. Our certified music practitioners offer just as much comfort to our patients as their nurses and social workers do. That's why we loved this article about this talented young harpist who shares her time and talents with hospice patients.

2. The physical, mental, and emotional stress of caregiving often becomes overwhelming, which is we continually encourage caregivers to be aware of their health, to not be afraid to ask for help, to seek opportunities for respite. We appreciate this article about "Caring for the caregiver" from the Chicago Tribune for the suggestions it offers to caregivers and to family and friends of caregivers. If you know someone who is a caregiver, give them a truly meaningful gift this holiday season. Relieve him/her of caregiving duties for a day or offer to take care of some of the items on the to-do list--the grocery shopping, the laundry, the housecleaning.

3. If you've got some time on your hands this weekend, about 45 minutes, we recommend using it to watch this YouTube video of the TEDMED Great Challenges Google+ Hangout, "The Caregiver Crisis." Learn more about the challenges facing family caregivers, and how this isn't an isolated challenge. The burden our country is placing on the millions of family caregivers out there is a shared burden, and it's great to see individuals trying to bring awareness and create solutions.

4. With the holidays fast approaching (tomorrow's the first day of December!), we know many of you are thinking about holiday gifts. If you know a family caregiver, consider giving them a gift they can actually use. Let this great Caring.com article, "5 great gifts for family caregivers" inspire you.

5. The holidays are a season for giving and for remembering those less fortunate than ourselves. The Casa de la Luz Foundation has been providing supplemental support to hospice patients since 2000. They help fill in the gaps for patients and families who are dealing with serious illness and facing the end of life, and the foundation's support offers relief to those who are already carrying a heavy burden. Supplemental support can mean an airline ticket for a family member who hasn't seen the dying patient in years, a grocery gift card to a struggling family, a utility payment so a dying patient can remain at home, or funeral and cremation assistance. Please consider a donation to the Casa de la Luz Foundation this holiday season.

Wednesday, November 28, 2012

The Wednesday Image: Spring Reminder

Pansies in bloom
Image taken by Marilyn Hansen

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, November 26, 2012

Hospice Care: After the Death of Patient, Part 2

(Editor's Note: This is the second part of a piece about what happens after the death of a hospice patient. Read the first part here.)

Before calling the mortuary, I ask if other family members will be arriving at the home to pay respects, and if there will be a viewing. We figure out the best time for the mortuary to pick up the body.  (The patient and family will hopefully have already selected a mortuary through previous conversations about final arrangements. The hospice social worker is available to assist in making funeral arrangements.) When I call the mortuary with the official pronouncement and the requested pick-up time, I also let them know if there are known infectious diseases. I also fill out a form with the deceased's information that goes with the body to the mortuary.

I believe information helps, so I explain to the family what happens next. When the mortuary staff arrives, they will meet the family, get the form the nurse has filled out, and look at the room arrangements so they can move the body gracefully. They leave briefly and return with a gurney. Family may observe the body transfer if they wish. The body is wrapped in a plain white sheet or placed in a white plastic zippered bag. On the gurney, two seatbelts secure the body and then a blanket or quilt is placed over the body to the shoulders. The mortuary staff will bring the body out to the living room or entryway and allow the family to say a last goodbye. When the family is ready, the body is moved to the mortuary vehicle.

At the mortuary, the body is placed in a cold, safe room. The funeral director calls the family within 24 hours to arrange a meeting at the mortuary to finalize arrangements and sign papers. Whether the body is to be buried or cremated, nothing is done to the body until the physician signs the death certificate and the family papers are signed.

The narcotics are disposed of in a ziplock bag of dish soap or kitty litter. I offer some final advice about caring for oneself while grieving, and encourage the family to call the hospice with any questions and for emotional support. Bereavement services are explained. Then I leave.

In less than two hours, people's lives are changed forever, and I have been honored to help them take a few steps along their paths.

By Mary Toren, RN

Friday, November 23, 2012

Friday Five: Links for Your Weekend

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

1. This was an interesting article for those who work within the hospice community. We don't particularly care for the phrasing "sell" people onto hospice care, but we do believe we are trying to increase public awareness about the benefits of hospice. The headline, "Hospices trying to sell the public on their care," offers a negative connotation, but thankfully, the article doesn't continue in that way. Hospice is truly a service designed to support individuals and their loved ones as they journey through the end of life. We hope that an article such as this does more good than harm, allowing others to understand what hospice can offer to their family.

2. The Atlantic presented a wonderful viewpoint, in text and video form, by Dr. Ezekiel Emanuel about the need for better end of life care. He makes very good points about the need to train physicians in end of life care discussions, and proposes changing hospice guidelines to be focused on need as opposed to the six-months or less to live rule. "End-of-life care should be universally provided and need-based" is a discussion we'd like to see the nation continue to have.

3. This is a great bullet point list from Emeritus Senior Living about preparing for the holidays. It's a great list for caregivers of individuals with dementia. The list has tips for preparing your loved one and preparing visitors. If you plan on visiting an elderly relative with a family caregiver, there's also a section just for visitors. We know these will be great tips as the month of December approaches, and it seems like life becomes a whirlwind of preparing for visitors, hosting visitors, and then cleaning up after everybody has left.

4. Though the holidays are usually a time focused on happy festivities, they are also a great time to have important family discussions. This is when most families gather together for the year, and some families find it then also a useful time to review any end of life arrangements for elderly parents, relatives, or themselves. If you haven't yet had discussions about end of life arrangements for those in your families, consider starting with Engage with Grace's One Slide Project. Download the pdf or jpg and hand it out to everyone, or pull it up on a computer for all to see around the table. Ask each other the questions on the slide. There's no time like now.

5. The holiday season can reawaken feelings of grief and loss, as we remember seasons past and spend time with loved ones. If you find yourself struggling with the loss of a loved one, during the holiday season, or any other time, consider reaching out to a grief support group. For those who are crunched for time, consider an online group, such as the ones with GriefNet.org. The power of the Internet is that it works on a 24-hour basis.

Wednesday, November 21, 2012

The Wednesday Image: Turtle Family

Resting on the back of another, Tucson, AZ
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, November 19, 2012

Hospice Care: After the Death of a Patient, Part 1

One of the benefits of a home hospice death is that it's not an emergency. No fire truck or police cruiser to show up with lights and sirens. No crush of strangers in the room. No whisking away of the body so beloved by the family. "We'll go at the family's pace," I tell people. "There are things to be done, but there's no hurry."

In my time with the family I am guided by these principles: It's okay to cry or not cry; doing simple tasks helps people; people don't know what to say until they are asked a question; be kind and gentle, slow and respectful; share information in small bits as it is needed.

I arrive at a home knowing that one of our patients has died, and the name of the person who reported it to the hospice staff. I introduce myself and locate the next of kin, offering sympathy with gentle words and touch. Next I go through the ritual of listening for a heartbeat, checking pupils and determining that the patient is dead. Every touch is gentle and respectful, as though the patient could feel and be comforted. I meet the eyes of the family and affirm, "Yes, she's gone." Of course they know their loved one is dead, but seeing the ritual and hearing it from the nurse makes it more real.

As a hospice nurse, my goal is to not only provide patient care, but also to support the family. I will determine what the family needs as they are processing their loved one's death. If the family wants, I can call for the hospice chaplain or hospice social worker. A few of the practical tasks that need to be completed after a patient death are to bathe and dress the body, call the mortuary, and dispose of narcotic medications.

Bathing the body is a time-honored tradition and American culture allows for what is meaningful to the family. I explain that I will clean and dress the body, and that they may participate or observe, or not, per their choice. Warm water is used to bathe the body. Reminiscing is encouraged. I speak to the person as I do when I am bathing a patient.

With the family's permission, clothing is cut away from the body and new clothing is cut to slip onto it, then tucked into good fit. It is important that the family choose the clothing because this is the last time they will see the patient at home. When people are nearby, but not engaged, I find a task for them. A 15-year-old girl can find her Tia's hairbrush and say how she styled her hair. A young man can shave his grandfather's face. Young adults can move cars for the mortuary van and furniture for the gurney. I always ask for help, because the more involved each person is, the less helpless he feels.

I think after the body is bathed and dressed, the family tends to feel more grounded. Tasks are done, respect is shown, "Dad looks like he's napping," and family members have learned that they can put one foot in front of the other and keep going a few minutes at a time.

(Editor's Note: Continue reading next week for part 2 of the series to learn how to prepare for the transfer to the mortuary, and how hospice continues to support families after a patient's death.)

by Mary Toren, RN

Friday, November 16, 2012

Friday Five: Links of Interest

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

1. We always hope that the more news articles there are featuring hospice patients, the more individuals who will allow the hospice community to provide care to the patient at the end of life. "Veteran facing lung cancer on his terms with hospice" is exactly one of those articles.

2. We believe that everybody should have a discussion on what they would want at the end of life if they were no longer able to speak for themselves. We believe that doctors and others in the healthcare community should be able to guide families through the end of life care discussion. We hope that studies, such as "Early end of life talks tied to less aggressive care," will continue to prove that these conversations are necessary and can help fulfill patients' wishes.

3. Area agencies on aging are valuable community resources for individuals who are caring for an elderly loved one. These agencies can help connect you to other resources for caregiving assistance, insurance help, financial assistance, and more. Visit the National Association of Area Agencies on Aging website to find your local agency. 

4. Caring for an aging parent is exhausting, difficult, and stressful. But there are strategies to help you navigate these waters. This Discovery Health article, "5 Tips for Handling the Stress of Aging Parents," offers some simple techniques to guide you through this time. 

5. Thanksgiving is next week (already?!) and we know the holiday season can be difficult to face after the death of a loved one. This season of cheer and quality time with family can also be a painful reminder that a loved one is no longer with us. This might be a good time to re-read our blog post from last year, "Six Steps to Dealing with Grief During the Holidays." Casa de la Luz Hospice also offers a drop-in grief support group every Friday morning that is free and open to the public.

Wednesday, November 14, 2012

The Wednesday Image: Go Wildcats!

2012 University of Arizona Homecoming Game
Image provided by Brianne Pekar

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, November 12, 2012

For Family Caregivers: Tips for Self Care

Taking care of a seriously ill or dying loved one is the hardest thing most people will ever do. Caregivers deal with the most intimate of feelings and body fluids daily, and it is physically, emotionally, and spiritually messy. To continue being your best caregiving self is to find ways, big and small, to maintain your health and sanity.

I have great faith in people. Caregivers, as individuals, know what they need, but who has the time during the daily routine of feeding, bathing, and keeping a loved one clean and comfortable. The best one can do is be mindful of self care and practice it when time allows. Remember, self care can be anything from a few minutes of morning meditation to an afternoon of lunch and a movie.

Mindful. Mindfulness. Calm awareness. Following is a way to practice mindfulness of self care during your daily chaos.

Each day, read one tip from the list below and think about it throughout the day. Bring to mind the way in which you already practice it. Imagine new ways that you would like to incorporate it into your life. At the end of the day, bless yourself for all you have done for yourself and your loved one.

1. I cannot do it alone. I won't even try.
2. My sense of humor keeps me in balance.
3. It is good to vent. (Write, cry, complain, break things, scream in the car.)
4. Safety first, mine and my loved one's.
5. Patience, with myself and others.
6. Respect for myself and others.
7. I ask for help.
8. Music soothes my soul.
9. I trust my body. When it hurts, I take care of it. If it still hurts, I see a doctor.
10. I know when to be a loved one.
11. I know when to be a caregiver.
12. When the hospice volunteer comes, it is okay to take a long shower and a nap.
13. Nursing aides have magical skills. I will ask the aide to teach me some tricks of the trade.
14. I can ask for help.
15. Sleep is my friend. Naps are good. It is okay to lie down and rest when my loved one is resting.
16. Laughter is good for my soul and my belly muscles.
17. Make a list of tasks others can do. When someone offers to help, accept and give them a specific task off the list.
18. Ask a friend to come over for lunch, and if he/she offers, I will let him/her bring the lunch.
19. I give thanks for my ability to love.

By Mary Toren, RN

Friday, November 9, 2012

Friday Five: Five Links We Liked This Week

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

1. Though this article, "Hospice care made journey easier," in the Albert Lea Tribune is short, its message still hits the point. Mary Carlson's comments in the article about wishing for hospice sooner, and how their choices and wishes came first, are comments we often hear from our own patients. When you're facing a terminal illness, know what all of your options are. Ask your doctor about curative treatments, but also don't be afraid to ask about hospice care. Advocate for your health, your wishes, your quality of life.

2. For those who work in the area of elder care, we know there's a rapidly growing population that needs to be addressed. This Forbes post, "The Eldercare Cliff. It's Coming. Are You Ready?" is eye opening with the sheer number of statistics the writer throws out there. She reviews the older adult population, the number of family caregivers taking care of those older adults, the economic toll on the Medicare system. The article's interesting just to help understand the scope of the potential crisis we're facing as a nation.

3. Casa de la Luz Hospice is proud to be a Level 2 partner in the national We Honor Veterans program. Take a moment in honor of Veterans Day this weekend to remember the men and women who served our country, and the individuals who continue to do so today. The video is a link to a National Hospice & Palliative Care Organization YouTube video explaining the We Honor Veterans program, and how hospices around the country are committing to recognizing the sacrifices so many have made in the name of the United States.

4. The Casa de la Luz Foundation is honored to host Dr. Ira Byock today at our 12th annual end of life educational conference. Dr. Byock is a leading hospice and palliative care physician, and we admire the strides he has made in educating our society about the power of hospice and dignified end of life care. We love this video featuring Dr. Byock, "Celebrating People Out of Life," for his description of how we can approach dying.

5. Lots of questions come up when you begin caring for a seriously ill relative or friend. These questions might be practical, emotional, or just where to go for help. Our site, Living with Serious Illness helps answer some of these questions, and also lists resources in Pima County, everything from assisted living facilities to local support groups to finding financial assistance.

Wednesday, November 7, 2012

The Wednesday Image: In the Middle of the Mountains

Thimble Point Vista, Mt. Lemmon, Tucson, AZ
Image provided 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, November 5, 2012

How I Became A Hospice Nurse

Many years ago when I was Director of Patient Care in a small hospital and nursing home in Wisconsin, my boss stopped in my office and asked if I would be interested in riding along with him to Madison the next day. He was headed to a meeting, and he had just heard that Dr. Elisabeth Kübler-Ross would be speaking at the university and he’d be glad to drop me off there

I had read Dr. Kübler-Ross’s book, “On Death and Dying,” in which she described the five stages of grief. I was delighted to have an opportunity to meet her in person so I eagerly accepted the offer.

Listening to this presentation was a life-changing experience for me. This small, soft-spoken, humble lady was so powerful in her description of her work with dying patients, and her great desire to assist other health care professionals do a better job of helping dying patients and their families through that final journey.  Being able to talk so freely about death was such a new and thought-provoking concept to me.

Some time later, a decision was made to close our nursing home and move patients and staff to a brand new facility that was being built in the community. The nursing home move was completed smoothly and now came the big question. What were we going to do with all of that empty space?

An idea was forming in my mind, so I traveled to the Twin Cities area and visited a couple of inpatient hospice units and gathered information about what was involved in starting a hospice program. I then wrote a proposal to the Board of Directors of the hospital to consider starting a hospice program in some of the vacant space. There was a very good RN on the staff who had hospice experience and was eager to head up this program. Lo and behold, the board unanimously approved the project. The RN was given six months to develop policies and procedures and get Medicare approval. Hospital auxiliary members were excited to work with the architect on remodeling the seven-bed inpatient unit into a beautiful, home-like place. Medicare approval was received, the state surveyors gave their approval, staff members were trained, and many volunteers came forward to receive training and to become part of this wonderful program.  

Fast forward to a move to Tucson. I thought I only wanted to work part-time so I accepted a position as a part-time Utilization Review nurse. Like many part-time jobs, this one soon became full-time. Ultimately, I became supervisor of utilization review for a large HMO, but my love of hospice was always there.

I had met Lynette and Agnes, the co-founders of Casa de la Luz Hospice, and heard a lot about Casa de la Luz. I submitted an application to them when I became tired of my cross-town commute and was ready for a change.

One particularly busy day, I received a call from Agnes asking if I’d like to interview for a job as a case manager on the Facilities Team and the rest, as they say, is history.

I’ve been with Casa for more than six years and love this work.  Getting back to my roots in patient care after so many years in management was very rewarding.  I have made many friends in the facilities I visit and the wonderful patients and their families are priceless.  So many people ask me if this job is depressing, but I can honestly tell them that almost every day it gives me something to smile about.  Being part of the final journey is truly an honor and privilege. 

(Editor's Note: If you are seeking a career in hospice nursing, please visit our Careers page to learn more about position openings with Casa de la Luz Hospice.) 

By Julie Lohman, RN

Friday, November 2, 2012

Friday Five: The 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're always honored by the contributions of hospice volunteers to our work, and we're grateful to actress Torrey DeVitto for her time and commitment to being a Hospice Ambassador. NHPCO has been working closely with DeVitto over the last year, and we appreciate her efforts to raise national awareness about the benefits of hospice care. This was a lovely piece from DeVitto that was published on The Huffington Post this week, entitled "No one deserves to die alone."

2. Our hearts go out to those who suffered losses during Hurricane Sandy this week. For those who'd like to offer monetary contributions,you can donate to the National Hospice Foundation. The Foundation has a disaster relief fund that sends emergency funds to hospices when the need arises.

3. Veterans Day is near, and we want to remind you that the Department of Veterans Affairs offers a number of benefits to those who have served. If you served in the military, take a look at the VA's Health Benefits page to see what benefits are offered, and if any are available to you. You can call to apply, or just apply online.

4. November is National Hospice Month, and we hope that you will be able to learn about the comfort, love, and respect individuals should receive at end of life from hospice and palliative care professionals. Read NHPCO's Hospice Month Proclamation to learn more.

5. We liked this post in the NY Times' New Old Age blog about how to take a picture to remember. In the final years of life, families want photos to remember their loved ones. These tips will help ensure you take some truly great photos.

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.