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, 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.