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, October 31, 2011

Book Review: Parentless Parents

Title:  Parentless Parents:  How the loss of our mothers and fathers impacts the way we raise our children.
Author:  Allison Gilbert                                
Publisher:  Hyperion                     
Release Date:  Feb. 2011

Do you parent differently if you no longer have parents?  Allison Gilbert, author of Always Too Soon:  voices of support for those who have lost both parents, explores this question in her latest book, Parentless Parents:  how the loss of our mothers and fathers impacts the way we raise our children.
Her answer is that yes, “The Grandparent Gap” – the lack of grandparents – creates a void in a child’s life.  A parentless parent faces child-raising without their parents’ advice, without the steady stream of reassurances that all will be well in time.  There can be no comforting phone call when a child is facing an illness, a school problem, or some life lesson.  Without a parent, where does one go?  There are books, well-meaning friends, Dr. Phil, and Google, but do they really know YOU and the special needs and circumstances YOUR child faces?  No, of course they don’t.  Only a grandparent, your parent, would have this intimate, necessary insight into you and your child.

Not only does the parent experience loss, but the child loses too, even if the child has never had the grandparent in their life.  The lessons learned from loving, living grandparents are irreplaceable, no matter how hard a parent tries to fill that gap.  Gilbert calls this the “I” factor:  the “irreplaceable”, the total inability to restore what is missing.  Unconditional support and validation, along with skills and family-driven behaviors, are gifts from grandparents that will always be lost to the child.

Gilbert does a good job of laying out the losses.  She recognizes the isolation of parenting without parents.  This book is the story of her journey, her processing of the loss she experienced and the ongoing issues of continued loss as she raises her children.  She deals with some very personal issues such as her own jealousy of having her husband’s parents actively and lovingly engaging with her children.  Admitting that her children are blessed by these loving grandparents, she still mourns for the missing piece of her parents’ contribution to their lives.

Once I realized that this is not a self-help book, I stepped back and accepted Gilbert’s thorough examination of the process and the journey she went through and still faces as her children grow.  You won’t find much in the way of coping mechanisms or solutions to the problems faced by parentless parents in this book.  But Gilbert doesn’t let you down altogether.  She has created support with a Parentless Parent group page on Facebook and her followers there share ways to bridge The Grandparent Gap.

Since 2008, more than 600,000 children were born to mothers 35 years of age and older.  This dramatic generational trend will increase the number of parentless parents.  Gilbert’s insight and investigation into this development is a good start to understanding the losses faced by future generations.

By Carolyn Lytle, HR Assistant

Friday, October 28, 2011

Friday Five: Long-Term Planning and Family Caregiving

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

1. We highly recommend you take the time to read this article, "Still no relief in sight for long-term needs," from the New York Times, and then you sit down with your spouse, your children, your loved ones and talk about potential long-term care needs.

2. This is a very insightful and personal blog post on kevinmd.com by a cardiologist and blogger. "Aggressive care at the end of life continues to grow" asks us to question how medicine treats the elderly and the need to face the issue of dying and death. Death is an inevitability, but as we grow older, many of us will be able to choose how to approach death when the time nears.

3. Checklists can be very helpful when you're in an unfamiliar meeting trying to gather information. Family caregivers looking at assisted living options will appreciate this List of Financial Questions to ask when visiting a facility, from the National Caregivers Library.

4. We always remind family caregivers to take care of themselves, and to not be afraid of asking for help. Organize your caregiving team through the Lotsa Helping Hands website, a caregiving coordination service. Utilize the calendar to schedule who's who of caregiving tasks, and share photos and updates with out-of-town family and friends about how your loved one is doing.

5. This is an interesting map from AARP to represent the economic value of family caregivers. Our response? Family caregivers are invaluable!

Wednesday, October 26, 2011

The Wednesday Image: The Gift of Animals

Thanksgiving Alpaca, Withers Ranch, Marana, AZ, October 2012
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 featuring images that represent what we love and appreciate most about life in Tucson.

Monday, October 24, 2011

Journey Through Grief: Becoming Keeper of the Story

Adaptation of a speech from Casa de la Luz Hospice's  Celebration of Life Fall Memorial 2011

An astonishing meeting took place in British Columbia in the late 1980s. Government officials of the province informed elders of the Gitksan Indian Tribe that the land they had lived on for thousands of years actually belonged to the Canadian government, and the tribe had no legal claim to the land. Tribal elders could not understand what the officials were trying to tell them and the officials, in turn, could not understand why the tribal elders could not see that the legal document gave the Canadian government rights to the land.

Finally, an elder of the Gitksan tribe voiced what was troubling them. He asked, “If this is your land, then where are your stories?” The government officials did not know how to respond to such a question. So the elders began sharing the stories that told of their relationship with the land and its resources, songs that displayed their people’s history, and shared beliefs that revealed a hope in their future.

For the government officials, this made no sense. What do stories and songs have to do with land and people? If this is your land, where are your stories?

Edward Chamberlin puts it this way, “Stories give meaning and value to the places we call home. They define what we have in common at the same time that they illuminate our differences. Stories teach us where we came from and why we are here, they show us how to live, why to live, and even how to die. Stories not only teach us what to believe in, but even more importantly, they first teach us how to believe. And we all need to believe.” We have to believe that the monsoon rains will fall, that the temperatures will dip below 100 again; we need to believe that the fields we plant will yield a harvest, the bread will rise, and that our lives have meaning.

Our story has brought each of us to this place. We all have been touched by that mystery called death. Now our story calls us to a new life and a new way of living. We are called to be keepers of the story of our loved ones. We are to be keepers of the story, not storytellers—and folks, there is a difference. Lord knows we have plenty of story tellers in the world. And don’t get me wrong, I love a good story teller, folks who can keep us on the edge of our seats with the simple phrase of once upon a time. But the basic code of the story teller says, “Never let the truth get in the way of a good story.”

We are not to be story tellers; we are to be keepers of the story. This means we are called to live and reflect honestly on the story that has been passed on to us by our loved ones who have gone before. As keepers of the story we are called to live into that which affirms life, to live into that which nurtures us and heals us, to live into that which offers the ground of being and a faith to guide us. But just as importantly, we are called to learn from and let go of those parts of the story that have brought us pain and suffering. We are called to free ourselves from those dynamics in our relationships that hurt and divide.

Dr. Rachel Remen puts it this way, “Every great loss demands that we choose life again. We need to grieve in order to do this. The pain we have not grieved over will always stand between us and life. Grieving is not about forgetting. Grieving allows us to heal, to remember with love rather than pain. It is a sorting process. One by one we let go of the things that are gone and we mourn for them. One by one we take hold of the things that have become part of who we are and build again.”

Becoming keepers of the story is an important step on our journey through grief. We know how hard grieving is, don’t we? But the only way beyond our grief is to journey through it. And, it is a practice, folks, it’s a daily practice to begin to heal. It takes quiet courage, the strength to trust others again, and the honest reflection to live fully into our sacred story. If this is your life, then show us your story.

When we live fully into that story, when we walk along that path of grief into healing, we begin to see what we have deeply loved, we never lose, because what we love becomes part of who we are. On our journey through grief into healing we are becoming a new creation. We cannot remain unchanged. A friend who lost both of her parents said she feels as though she were a clay jar that has been cracked. She said that without warning she finds herself leaking—leaking tears. Tears flow from those cracks left by her loss. But on her journey through grief she has learned to value those cracks as well. She tells us that those same cracks have allowed light into her heart that she never knew existed. Through those cracks a little mercy has slipped, times of gentle forgiveness, and she has found new ways to love.

We are called to be keepers of the sacred story we all share. Our story reveals to us that we do have the strength to live into a new chapter. It takes the help of friends and family, support groups and faith communities; it takes the willingness to cry and the courage to laugh again. And by our presence here today we affirm that our story is not finished.

David Fife, Chaplain

Friday, October 21, 2011

Friday Five: Understanding Hospice Care

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

1. We can only improve the end of life experience if we are willing have an open conversation about our eventual deaths. It is wonderful to see articles in national papers like the Washington Post discussing the need for a national conversation about quality of life for terminally ill patients. Read "Accepting death is difficult for patients and doctors, but it needs to be done" for one doctor's perspective about the end of life discussion.

2. "My Father's End-of-Life Treatment: Not What He Had In Mind" is a wonderfully written, slightly heartbreaking first-person account by a daughter who wanted to fulfill her father's wishes, to care for him in a comfortable way, and to offer him some dignity at the end of life. Instead, she and her sister spent days struggling to navigate their way through an unwieldy and unhelpful health care system that failed to communicate clearly with the patient's family or consider the patient's end of life directives. In the end, hospice care was able to offer the family a few peaceful final days.

3. This week in the NHPCO Updater, they wrote about a nonprofit called the Coalition to Transform Advanced Care. If you believe that this country needs to change the way it considers end of life and care for advanced illnesses, spend some time learning more about this organization and how you can be a part of the mission.

4. Have you heard the term hospice care without understanding what it really means? Here's a quick FAQ from Caring Connections, a program that's part of the National Hospice and Palliative Care Organization. Learn if hospice care is right for you and your loved one.

5. In this technologically inspired age, and when our loved ones might be spread out across the world, a personal website detailing your story, updating family and friends about what's going on, and sharing stories with one another can be helpful and supportive. Create your own personal website with the help of Hospice Journey, a nonprofit that helps families communicate with one another during a difficult time of life.

Wednesday, October 19, 2011

The Wednesday Image: Classic Tucson

Hotel Congress sign at night
Image taken by Carrie Bui, downtown Tucson

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

Monday, October 17, 2011

I Am Present

There are many adorable quotes about one’s presence being a present to others.  My gift of presence is neither adorable nor cute.  However, my patients, families, and friends have taught me that my presence is one of the greatest gifts I can give, especially in hospice care.  For me, it is one of the more challenging gifts to give fully.

When I am present, I am fully attentive to the person I am with.   I am listening with my ears, my heart, and my spirit. 

When I have done everything I know to do for someone, I stop doing and simply look at the person.  I open my spirit so I can know what else the person may need and to receive guidance for what to say or do next.  Sometimes it is as simple as offering another drink of juice, or holding a hand.  Once in a while an unexpected statement or question springs to my lips.  As surprised as I am by what I’ve said, I am equally pleased with how heartfelt the person’s response is.

Years ago, the question “What’s it like to die?” slipped out before I could stop myself.  The man, who appeared to be suffering, said in a voice full of peace and wonder, “It’s so beautiful, all the colors and lights.  If I’d known how beautiful dying is, I wouldn’t have been afraid.  The colors are ones I’ve never seen before.”

It is most difficult for me to be present when I want to do, to fix, to change things, yet when a person is dying, sometimes there is nothing left to do, fix, or change. 

One Christmas I entered a family home filled with the bustle and smells of a holiday.  When I went to the young woman’s bedroom off of the kitchen, I knew she would be dead by day’s end.  Rejoining her mother and sisters in the kitchen, I told them, first with my tears, just how soon she would die.  We cried together in one another’s arms in the kitchen—mother, daughters, and nurse.  I was present.

Imagine being with family whose beloved grandmother has just died.  The body has been washed and dressed.  The mortuary is delayed by a storm and will not come for two hours.  There is little more one can do, and feeling the anxiety of ‘wanting to do something’ adds to the emotional chaos.  What is needed is presence.  It is difficult, but it is not impossible. I found myself in such a situation once, sitting in a corner between the toaster and the potato chips, and said a prayer, “Show me what to do.”  After a few minutes I went to a family member and asked about his relationship with the dead woman.  He started to reminisce about his sister.  For the next two hours I quietly moved between small groups, asked the simplest of questions, and then listened with an open heart.  I was present.

Sitting with a comatose patient is more difficult than it sounds.  Immersing oneself in a book or a video game keeps one from being fully present with the patient.  Sitting in silent meditation is something few of us can do.  If I know the person’s beliefs, I’ll say a prayer aloud.  More often, I read a thought provoking book, and imagine myself reading to the patient.  I look up frequently to “see” their reaction.  I imagine a conversation of spirits.  I “listen” for needs and wipe a hot forehead or hold a cool hand as I am moved.  It is the kind meditation that I can do, and I leave the room with a greater sense of peace.

Each person’s presence is their own.  Mine is neither cute nor adorable.  It does not fit clich├ęs.  But it is mine, and when I have given it fully, I am blessed with peace.

Mary Toren, RN, BSN

Friday, October 14, 2011

Friday Five: Planning and Support for Family Caregivers

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

1. Plenty of discussion around family caregivers revolves around the stress they carry, the difficulty of balancing caring for yourself, for a loved one, family members, and for many, work too. This week, Paula Span writes in the New York Times' New Old Age blog about a new study that discovered Caregiving's Hidden Benefits.

2. I think it's always important to remind people about the importance of advance directives. If a medical crisis occurs, or a health condition impedes your ability to communicate, help your loved ones in making the tough decisions. Spell out your wishes for them in an advance directive document like the Five Wishes, an easy to fill out form written in layman's terms.

3. For those new to caregiving, this helpful tip sheet from Medicare offers suggestions and resources on How You Can Plan for the Future.

4. A new monthly edition of our e-newsletter was released this week. The articles offer handy tips for family caregivers.

5. Are you a family caregiver with children? It's important to take note of the impact family caregiving can have on children and teens. This article from Aging Today discusses how children and teens sometimes have to step into an adult role, and the support through the American Association of Caregiving Youth.

Wednesday, October 12, 2011

The Wednesday Image: Desert Beauty

Cactus flower
Image taken by Crystal Cannon
Hospice care teaches us not only how to approach death with dignity, but it also teaches us how to appreciate life. The Wednesday Image is a weekly series featuring images that represent what we love and appreciate most about life in Tucson.

Monday, October 10, 2011

The New Home of Casa de la Luz Hospice

Preparations for our new front reception area
Today is a big day for Casa de la Luz Hospice. If you’re our fan on Facebook, then you’ve probably seen the photos we’ve been posting since May of our under construction new campus. We outgrew our administrative  offices—a couple times over—and today marks the day we begin official administrative operations from 7740 N. Oracle Road, Tucson.

Construction will continue for the next six months or so on our two other buildings—the Casa de la Luz Foundation and the Casa de la Luz Conference Center. We look forward to celebrating the completion of the campus in early summer of 2012. 

The new administrative office features contemporary
modular units to promote interaction and
collaboration among hospice team members.
This new campus allows Casa the chance to continue to grow as Tucson’s leading hospice. We’re excited by what this move represents—our growth as a hospice and an opportunity to help more people through the end of life journey. By offering employees a better workspace, one that fosters greater interactions and more spontaneous collaboration, we can all continue to provide superior care to our patients and their loved ones.

Thirteen years ago, Casa de la Luz Hospice was founded by two Tucson women, Lynette Jaramillo and Agnes Poore, RN. They envisioned an organization that would provide superior hospice services to Tucson and its surrounding communities, an organization that would focus on quality of life and provide comfort, support, and experienced hospice care during the end of life journey. We are honored to serve patients and their loved ones during this precious phase of life.

Continue following the construction of our campus and the growth of Casa de la Luz Hospice by following our Facebook page. 

By Carrie Bui, Communications Specialist

Thursday, October 6, 2011

Friday Five for Family Caregivers & Hospice Professionals

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

1. Dying and end of life issues are global concerns. Learn more about NHPCO's partnership with FHSSA, Foundation for Hospices in Sub-Saharan Africa. Many African hospices battle with the impact of the HIV/AIDS pandemic, and FHSSA focuses on creating partnerships between U.S. hospices and hospices in 15 African countries.

2. It's likely that as a caregiver for an aging family member, you'll run into questions about Medicare. Visit the Ask Medicare portion of their site, just for family caregivers, to find answers, supportive videos, and links to resources.

3. NHPCO hosted their annual Clinical Training Conference this week in San Diego. If you couldn't attend this great hospice and palliative care training, you can check out the highlights via the NHPCO News Twitter feed.

4. Support groups can offer solace and understanding from people who understand your grief and loss experience. If you're uncomfortable with the thought of an in-person group, consider seeking online support from a site like Griefnet. The community hosts more than 50 e-mail grief support groups.

5.This week the world mourns the death of Steve Jobs, Apple co-founder. In his 2005 commencement speech to Stanford University, Jobs said "...death is the destination we all share." I think these are words to be remembered, especially as we help those facing the end of life journey.

Tuesday, October 4, 2011

The Wednesday Image: Arizona Animals

Female bighorn sheep
Image taken by Crystal Cannon, Arizona-Sonora Desert Museum

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

Monday, October 3, 2011

Finding Meaningful Work Through Hospice Care

"Why are you doing that?"

"Isn’t that depressing?"

Or my favorite, "Eeeew!"

These are all responses to my answer, when I am asked, "So, what are you doing now?" Well, I am working for a Tucson hospice.  This is not the field I set out to work in.  I have an entirely unrelated degree (environmental science).  However, given our current economy, I chose to widen my scope when looking for employment.  In doing so, I discovered the quality I most desired in any potential new career was meaningfulness.  That is a big word, and it will mean different things for each of us. For me, it means doing something each day that makes a positive difference in another person’s life.  I have found that in hospice.

I am not in the field with patients or their families, and I rarely get to meet them face to face.  Yet it is unmistakable, even over the phone, when you have touched someone in a positive way.   Hospice is a very unique community. You are thrust into the middle of a family when they are at their most vulnerable.  You become, for many, a part of their family, a friend who listens, and a helping hand in a time when they might feel hopeless and their lives as they know them, have come to a halt.   You cannot overestimate the relief a caregiver expresses, when they are told the equipment or medication their loved one needs to feel comfortable is on the way, even though it is 3 p.m. on a Friday. 

Or, that their nurse is on the way.

Or, that we will be here to support them, even after their loved one has died.

There are many places to find meaningful work: discovering cures, building homes, growing a community’s food, the list is inexhaustible.  There are few places where you are also touched by your work in a meaningful way.  Let me give the example of a gentleman who called to get himself admitted to hospice.  He was a very gruff sounding man, matter of fact about his own diagnosis, and had little patience for small talk.  While asking for his information, he curtly informed me that I already had all of that information, if I would just look him up on the computer.  As it turned out, our hospice had served his wife a few years earlier.  I did not want to offend him, so I tried to be as businesslike as possible while finishing up our call, but somehow, his brush with the memory of his wife’s hospice experience opened the flood gates.  He proceeded to tearfully express his gratitude towards our hospice and the freedom it gave him to spend the last days of his wife’s life, at her side.  He ended the call with, "All of you there are angels; I just want you to know." Wow, what an uplifting thing to hear from a stranger.

Does working in hospice sometimes make me sad?  Of course.  I fear a day that I harden to our patients sorrows.  But do I get depressed?  Absolutely not.  This may sound strange to those for whom the word "hospice" makes them say "eeew," but this is my experience:  Working at a hospice is one of the most uplifting, life affirming and meaningful work experiences I have ever known.  

We all will eventually face our own death and the deaths of those we love.  This is a very scary thing if we continually shove all thoughts of death away, like a monster in the closet that grows and grows.   Yet there is something wonderful that happens to families when they begin to "live every day as if it was their last," especially when they have the support of hospice.  Old wounds and hurt feelings come out to be resolved; words of affection are used more freely; and fear of death is replaced with peace and acceptance.  In my small role, I get to help these families through this. 

Now, that is what I call meaningful.

Brandie Kiracofe, Operations Support