Welcome to House of Light, a blog produced and managed by the staff of Casa de la Luz Hospice. Casa de la Luz ("house of light" in Spanish) is a locally owned and operated hospice, serving the city and surrounding communities of Tucson, Arizona. Through this blog, we hope to offer education, information, and support about caregiving and hospice care to terminally ill patients and their loved ones. For more information, visit the contact us page.

Wednesday, February 29, 2012

The Wednesday Image: Butterfly Kiss

A butterfly settles on an orange blossom
Image taken by Kim Murphey

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

Monday, February 27, 2012

The Qualities of a Casa de la Luz Hospice Volunteer

Casa de la Luz Hospice is fortunate to have a strong base of amazing volunteers.  Many of our volunteers have come to us because they have experienced hospice care themselves or have heard about the superior care provided to a co-worker, friend, or neighbor.  Most individuals come with a good understanding of hospice services, although, this is certainly not a requirement. They simply need to have the heart to do the work, along with some other important qualities.

Casa volunteers follow the “Companionship Model.”  Companionship is defined by words such as fellowship, relationship, accompaniment, and “the state of being with someone.”  Our volunteers are trained to “be with” our patients and families.  In a fast paced and busy world, it can be a challenge to simply “be.”
The qualities needed in order to provide a superior hospice volunteer experience for patients and their families are:

An engaged heart – We have one chance to serve our patients.  Simply going through the motions specifically for one’s personal needs, like completing a special project or crossing a task off a list, will not suffice.  The heart must truly be engaged with the sincere and genuine desire to serve others. 

Flexibility – Things happen quickly on hospice, and there are no crystal balls to help us determine the future.  Our volunteers must be able to “go with the flow” when things don’t play out exactly as they had thought or hoped that they would. The anticipation of a new assignment or a visit on a particular day can change in a heartbeat. 

Communication – An awareness of one’s own communication style is critical.  Some patients love to visit; others need to sit in stillness and be quiet.  Our volunteers need to be comfortable in either situation.  They need to know when to talk and when to listen and always allow the patient to direct a visit.  Communicating with other hospice team members on a regular basis is important.

Commitment – Our patients come to rely on and enjoy weekly visits from our volunteers.  Life has many twists and turns and can be busy at times.  The volunteer must be able to commit 1-2 hours per week to their volunteering.  A commitment based on faith and trust in our organization is a must. The volunteer’s commitment is a part of the hospice’s greater promise to provide a patient and their loved ones with superior care.

Being agenda free – Visits are about the patients and not about one’s own self.  It is important that our volunteers keep themselves “in check” before walking through the patient’s doorway.  The things that we value most can be considered agendas when we feel the need to impose them on others.  Allowing the patient to lead every visit serves the patient best and allows them to maintain a sense of comfort, dignity, and harmony.

Casa volunteers tell us they are honored when allowed the opportunity to spend time with our patients and families.  We believe that volunteers are special friends for a season during a very sacred time.  Our volunteers say that they get more out of this experience than they give.  They find the work to be incredibly meaningful and often say that they are learning a lot about themselves.

To learn more about volunteer opportunities with Casa de la Luz Hospice, visit our Volunteers page, call us at 520-544-9890, or send us an e-mail. 

By Cindy Motz, Volunteer Coordinator

Friday, February 24, 2012

Friday Five Thinks About Dying and Death

The Friday Five is our weekly roundup of web links to smart articles and helpful resources addressing end-of-life issues and caregiving needs.

1. As hospice professionals, we appreciated Craig Bowron's op-ed piece in The Washington Post this week, "Our unrealistic attitudes about death, through a doctor's eyes." We as a society, and those especially in the healthcare profession, need to be more honest with ourselves. Death is a fact, a piece in a circle of life. It is not optional, and we shouldn't treat it as though it is. Just because we can prolong a heartbeat and breathing, it doesn't mean we are adding to the living. Bowron explains the reasons he thinks have changed how we as a society think about and face death, and whether or not you agree or disagree with the reasons why, it is difficult to argue with the fact that we are not good at accepting death. And, the more people who speak up and share their opinions, like Bowron's op-ed piece, the more we can open the door to conversations about what we want at the end of life.

2. and 3. Across the last few months, there have been a few Friday Fives that listed articles by L.A. Times columnist Steve Lopez. His column, Matters of Life and Death, was deeply personal as he shared the story of his father's declining health and explored the end of life in this country. On Feb. 18, the L.A. Times posted, "A father's last days," a column blending Lopez's personal experience, a phone call from a hospice nurse letting him know that death was not far away, and Lopez's professional research, a meeting at Cedars-Sinai about helping families to limit suffering, and avoiding costly procedures "that extend dying more than they prolong life." On Feb. 22, the L.A. Times posted Lopez's loving obituary for his father, "To Tony Lopez, with love" and one can only believe that these conversations have played some role in advancing the end of life discussion in our country. Thank you to Steve and Tony Lopez for sharing their story.

4. For some, putting words to paper (or computer) is a great way to confront feelings of grief. You might choose to recount fond memories of events and moments from years ago, or choose to reflect on what the last few weeks were like, for you and your loved one. "The Last Dance" is one woman's account of her last day with her husband. Let it inspire you to write down your memories and to open your heart, to allow yourself the space to be with your grief.

5. Find strength, encouragement, and support among others. Casa de la Luz Hospice offers support groups to assist you in your grieving process. Learn more about grief support options at our website or call us at 520-544-9890 to speak with our bereavement department.

Wednesday, February 22, 2012

The Wednesday Image: Desert Rose

Rose from the garden of Marilyn Hansen, 
Casa de la Luz Hospice Assisted Living Liaison
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, February 20, 2012

Dealing with Grief: Releasing Regrets After a Loss

How big is that bag of burdens you carry with you?  You know, the list of things you wish you had…or hadn’t said, the one with the list of things you were going to do…but never did, or perhaps the last good-bye or I love you that never got said.

For some of us that bag is pretty darn heavy—so heavy it’s hard to move sometimes.  And  the best thing about the bag of burdens you carry is that if you ever start feeling good, laughing or enjoying yourself, it’s there reminding you of everything you didn’t do. And if you start to forget the details, all you have to do is get it out and look at what’s in there over and over and over to remind yourself of all the things you could have, should have, and would have done if you were a better, more loving person.  And even worse, did you ever feel guilty but couldn’t remember why?  That’s when the bag really comes in handy.

Guilt is what I call a “heavy” emotion.  It wears us down. It’s hard to carry.  It keeps us from moving forward in our lives because it holds us to the past.  Its close cousin is anger, another “heavy” emotion.  Guilt is anger—anger directed at ourselves.  In my experience, guilt and regret can cause us to become “stuck,” and prevent us from finding meaning and joy following a loss, such as the death of a loved one.

Joy is a “light” emotion.  It lifts us up, inspires us, and makes life worth living again.  The more we experience joy and peace, the more light we have in our lives.  

Did you know that the more compassionate we are, the less we are able to forgive ourselves?  We somehow hold ourselves to a different, higher standard of perfection in our relationships, perhaps an unrealistic expectation.

The truth is that we are all imperfect beings and healthy relationships are balanced with an abundance of love and forgiveness. When a loved one dies we tend to forget their imperfections and magnify our own, often causing ourselves undeserved pain and suffering, both complicating and prolonging our grief experience.
So, how do you release your regrets? How do you let go of the “if onlys” in your head?

The following three steps can assist you in dealing with your grief and be a step toward a more joyful life experience, one you know your deceased loved one would wish for you.

1. Grant yourself permission for self forgiveness, acknowledging your membership in a mostly well intentioned, though flawed, human race.  

2. Express your regrets in a way most comfortable for you:
a.       Write a letter to your loved one who died.
b.      Document your feelings in a journal.
c.       Talk to your deceased loved one at the graveside or gaze at a picture, expressing your feelings.
d.      Work with a counselor or therapist 

3. Write the following affirmations nine times twice daily, morning and night for 30 days. This process communicates your intent for self-forgiveness to your deepest self.
“I forgive myself for everything, real or imagined.”
            “I forgive myself completely.”

Most importantly, nurture yourself with kindness and experience light and joy in your life.

Self-forgiveness is a gift you give to yourself and others.  As others experience your light they find a path to their own.

For information about grief support groups in Tucson, contact Casa de la Luz Hospice at 520-544-9890. Casa de la Luz Hospice's support groups are free and open to the public.

By Bonnie Knobloch, RN, M.Ed

Friday, February 17, 2012

Friday Five: Caring for the End of Life

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

1. Join AARP's Create The Good program for ideas and how-to guides to create good in your community. We, of course, were especially captivated by the How To Care for a Caregiver guide and the Build a Caring Community Network guide. I'm sure all of us would love to do some good, and maybe this program is just the push you need.

2. This Huffington Post article by Bronnie Ware was interesting and a bit inspiring. Ware worked in palliative care for many years, being with patients who were facing the end of life. In her Huffington Post piece, she shares the "Top 5 Regrets of the Dying." It's interesting to read what people think about at the end of life, but it's truly inspiring because it makes you ask yourself, "what will my regrets be when I die?" The regrets people shared with Ware are not unchangeable regrets. In this way at least, you do have control of your life and your destiny. So, do something that makes you happy today, call an old friend, do something you're scared to do, and spend some time with your family instead of responding to "just one more e-mail."

3. This week, Paula Span wrote a blog post for The New Old Age about a new campaign, "You Gave, Now Save" from The National Council On Aging and the National Association of Area Agencies on Aging. These two agencies hope to encourage elderly adults to learn more about assistance programs and encourage individuals to apply for programs that they probably qualify for and are not utilizing. Plenty of resources for the elderly are available, and area agencies on aging can help connect you to resources in your community.

4. There's a lovely series of YouTube videos by the California HealthCare Foundation, Reflections on End of Life Care. Some of the videos are individuals' personal stories, and I really believe that nothing's more effective than hearing someone else's story. These are real people telling you why they wish had known their loved one's wishes, and this is how they had the end of life conversation with their loved one.

5. Here's a helpful article with accompanying podcast with tips for caregivers. This caregiver resource comes from Cancer.net, a site with information approved by the American Society of Clinical Oncology. If you've just started caring for an elderly parent or other aging loved one, this article is nice because it's a pretty extensive list and best for a new caregiver. Seasoned caregivers will find they've already heard most of the information before.

Wednesday, February 15, 2012

The Wednesday Image: Surprise Snowfall

A surprise Valentine's Day gift of snowfall from Mother Nature
Image provided by Bob Ondercin

Hospice care teaches us not only how to approach death with dignity, but also how to appreciate life. The Wednesday Image is a weekly series of images showing what we love and appreciate most about life in Tucson.

Monday, February 13, 2012

Hospice Volunteer Moments

I became a volunteer with Casa de la Luz Hospice in early 2008.  I chose Casa de la Luz because I knew about the wonderful, quality care they provide to patients and families. My first assignments were two ladies with Alzheimer’s disease, then a woman with cancer.  Each experience was unique. 

For the last two years, I have been at the Inpatient Unit on Thursday afternoons.  I also go in to sit vigil when someone is near death.  If a family is unable to be with a patient in the active dying process, Casa does everything they can to have a volunteer sit with them.  I have been with several people at the end of their lives in the past, and I feel very comfortable in situations like this.  I feel privileged to walk with them on their journey home.

When I walk into the IPU, I know that I’m walking on hallowed ground.  As I make coffee, fill the chip basket, cut coffee cake, shred papers, wrap candles, or answer phones, I am humbled to be doing something to serve families who are grieving, and the staff who cares for them.

When I sit with patients, I feel honored to be with them.  Things happen in the IPU that are incredible.  Recently, a lady came into the IPU asking about a particular song that she had heard played.   She was leaving the next day to fly to another state for her father’s funeral, and she wanted this song played at his funeral.  Diana, the IPU manager, was in her office; I was at the reception desk.  Diana overheard the name of the person who sang the song; she walked out of the office holding a CD that had just been sent to her in the mail.  That CD had the song on it that the lady wanted.  I feel  there is an awesome God watching over us.

I wish that my mother, who died in 1992, could have experienced the blessings that Casa brings.

By Shirley Nelson, Volunteer

Friday, February 10, 2012

Friday Five Faces End of Life Concerns & Issues

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

1. As parents age, there comes a time when their adult children might have to start encouraging some difficult decisions. We're all familiar with stories of children looking for ways to take away the car keys from elderly parents, or conversations about the safety of an elderly parent living alone. But these aren't easy conversations to have, as roles seem to reverse, and aging adults recognize a slow loss of independence. The Los Angeles Times had a nice article this week, "Talking to aging parents about changes," about this very topic. The article includes a relatable personal story as well as some tips from experts in the field of gerontology and caregiving.

2. As a hospice, we're always striving to educate others and make them aware of all of their options. We have learned that there are still so many misconceptions about hospice care, and that there are also so many of us who are afraid to openly discuss death. A key player in this discussion should be your physician, and it's exciting to see this article and its accompany video from Boston University, "Teaching doctors how to close life's last door." Training students how to have difficult conversations with patients, about listening to patients' needs, physically, emotionally, and spiritually, will make them better doctors and means the rest of us will experience an improved level of care.

3. If you've filled out your Arizona advance directive (and we hope that you have), consider registering it with the Arizona Advance Directive Registry. Participants and their loved ones, and healthcare providers, can use the directory to look up registered directives. The website also offers a Guide to Filing Advance Directives in downloadable pdf format. There are no fees for the service.

4. Advances in technology help caregivers too! Coordinate care for your loved one using a website such as Lotsa Helping Hands. The site allows caregivers to create personal websites to help coordinate care needs and scheduling, post status updates about your loved one, share photos, and more. Lotsa Helping Hands offers plenty of support through monthly newsletters and webinars so you can get the maximum value out of your free website.

5. I became a fan of The Atlantic several months ago when my sister decided we should start subscribing to it. In the new March issue, already available online (and must be the issue on my kitchen table), is a piece by Sandra Tsing Loh titled "Daddy Issues." Loh and her siblings must manage care for her aging father and his second wife, also elderly and suffering from dementia. The article is a little darkly humored, and a bit irreverent, but I thought it would strike a note with any family caregiver who has thought, "I have reached the end of my rope."

Wednesday, February 8, 2012

The Wednesday Image: A Saguaro's History

Catalina State Park, Tucson, AZ
Image taken by Sally Saunders

Monday, February 6, 2012

Tucson Grief Support Groups

After the death of a loved one, we experience grief in our own unique way. Casa de la Luz Hospice is here to support you in your grief journey. Our bereavement team can provide you with support and connect you to local community resources. We offer a selection of support groups where you can find comfort and guidance with others.

We at Casa know that there are some universal grief responses, and we encourage you to honor your feelings. There is no set time frame for grieving, so allow yourself time to heal.

Listed below are our grief support group options. To learn more about our grief support groups, contact our office at 520-544-9890 or e-mail us at info@casahospice.com. All groups are open to the public, and free of charge, however, donations to the Casa de la Luz Foundation are gratefully accepted.

Casa de la Luz Hospice also offers a Celebration of Life Memorial Service twice a year to remember the lives of those who have died on our service. This is a powerful opportunity to honor the memory of your loved one. The Celebration of Life service is hosted in the fall and in the spring at St. Philips in the Hills Episcopal Church. The bereavement department mails an invitation to the family members for the relevant service. You can contact our office for dates and times.

Casa de la Luz Hospice Grief Support Groups

Friday Support Group
Open group for newly bereaved and other grieving individuals.  Offers support and discussion of topics of immediate need in a safe environment with a facilitator. The group meets each Friday, 10:00 a.m. to 11:30 a.m. at the Casa de la Luz Conference Center, 7889 N. Oracle Road. No registration required.

Healing Journeys
 Appropriate for individuals whose loss is two or more months. This is an eight-week structured group program for support and education. The session utilizes Understanding Your Grief, by Dr. Alan D. Wolfelt. Healing Journeys groups meet at the Casa de la Luz Conference Center and at other locations around Tucson. Registration is required, and  materials are provided. Day and evening groups are available. Please call the office for dates, times, locations, and to register.

Men and Grief
This is a special opportunity for men grieving the loss of a loved one. The group is offered periodically throughout the year.  Please contact our office for more information.

Continuing the Journey
 This support group is appropriate for individuals whose loss has been 10 months or more.
 It is intended for individuals who have completed the first Healing Journeys program or the Men and Grief group. The six-week series focuses on transforming loss into new possibilities. Notification will be sent to those who have completed Healing Journeys or Men and Grief.
Registration is required. Please contact our office with any questions or to register for the group.

Survivors of Suicide
This group is designed for individuals who are living with a loss by suicide of a loved one. A eight-session structured group for support and education will be offered periodically throughout the year.  Registration is required. Please call us for more information and to register. 

Friday, February 3, 2012

Friday Five Thinks About Hospice and Caregiving

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

1. There was a great article last week in the Sarasota Herald-Tribune titled, "Dying in the arms of dignity" by Kathy Silverberg. It's a great piece that points out our country's fear of discussing death, and creates a picture of why we don't need to fear death. Because Kathy Silverberg's mother was able to choose hospice care as a care option,she was able "to die the peaceful, dignified way she had lived her life." We should all be given that choice and opportunity.

2. It's Oscar season, and plenty of movies (and their actors, producers, directors, etc) out there are vying for your attention. Paula Span, frequent contributor to The New Old Age blog, discusses one of these movies, The Iron Lady. The film stars Meryl Streep as Margaret Thatcher, and Span watches the movie from not a political perspective, but one about aging. Thatcher suffered from dementia, and Span notes that the movie devotes almost as much time to the issue of Thatcher's aging and dementia as it does to her political history. After reading Span's analysis of the film, I'm interested to see Hollywood's approach to addressing the issue of aging and dementia. And, I'm a fan of Meryl Streep.

3. Last year the National Hospice and Palliative Care Organization appointed its first Hospice Ambassador, Torrey DeVitto. DeVitto is a 27-year-old actress and a hospice volunteer with Mission Hospice in California. As an ambassador, she is helping to spread the word about the benefits of hospice care. What we especially like is watching a person Torrey's age making the effort to reach out and educate others about an option of care that is typically reserved for an aging population. By spreading the word earlier, we can educate people sooner, to make them aware of the options for them, for their parents or grandparents, or other loved ones in their life. Watch this NHPCO video on YouTube as Torrey shares a hospice milestone.

4. Caregiving is often a team effort. Make collaborating a little easier with this Caregiving Log form, part of the the National Caregivers Library collection. It's a good way to ease communication between caregivers, as well as track changes in the patient over time. I would also suggest being open to modifying the form to suit your needs. Customize it to suit you, the other caregivers, and the patient.

5. One of the organizations we follow on Twitter shared this great article from Life After 50, a magazine for baby boomers. "Empowered Caregiving-Five Tips to Save Your Sanity" gives you the five most important pieces of advice when caregiving for an aging loved one. Consider changing your perspective and decreasing your stress after reading this article.

Wednesday, February 1, 2012

The Wednesday Image: Tucson Gem & Mineral Show

Tucson Gem & Mineral Show 2012
Image taken by Crystal Cannon