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, December 30, 2011

Friday Five: Aging and Caregiving

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

1. For a thorough online resource about aging and end of life issues, MySeniorCare offers information, education, and support. Their End of Life section includes a question and answer section, and links to articles explaining what hospice care is, the insurance options, and the levels of hospice care.

2. A common concern for everyone as we age and/or if we become terminally ill is the matter of finances. NHPCO's Caring Connections Planning Ahead section includes quick, easy-to-read advice about identifying sources of financial help. There's also a handy pdf of a Financial Inventory Worksheet to assist you in evaluating financial assets.

3. The New Old Age blog from the New York Times always offers interesting content to help drive the conversation about aging in the U.S. This week they discuss the question of whether or not physicians need to discuss overall prognosis with elderly patients, regardless of whether or not a terminal illness is present. The discussion is being sparked by an article the New England Journal of Medicine, from a palliative care specialist, a geriatrician, and an internist. I don't have to tell you that we think it's a great idea for individuals to talk to their doctors about probable prognosis, and that a conversation such as this would encourage advance health planning and discuss an individual's quality of life in their final years.

4. Have you recently become a caregiver for someone with a heart-related illness or condition? The American Heart Association has several resources to help support you in your caregiving journey. Consider downloading and printing their Journal Pages, designed to offer caregivers inspiration and help you through the process of caring for a loved one. For many, the keys to not letting caregiving overwhelm you mentally, emotionally, and physically is to stay organized and remember to care for yourself and give time to rejuvenate your spirit.

5. Are you or a loved one fighting COPD, chronic obstructive pulmonary disease? Living with Serious Illness offers a great resource page to help improve your daily life with COPD. Articles include avoiding crises, relaxation techniques, how diet affects breathing, and more.

Tuesday, December 27, 2011

The Wednesday Image: Hawk

A hawk rests outside the offices of Casa de la Luz Hospice
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 that represent what we love and appreciate most about life in Tucson.

Monday, December 26, 2011

Determing Your End of Life Goals

As we approach a new year (already!), many of you might be thinking about resolutions. Every year, we welcome a new year with expectations, goals, resolutions. “I resolve to save more money.” “This year is the year I will lose that extra 10 pounds.” “I resolve to be less addicted to Facebook.” 

In hospice, we set goals too, and we encourage our patients to consider what their goals are. These goals are the things that will give us hope at the end of life. The hospice team, the nurses and social workers and chaplains, go in and they ask patients, what do you want for the end of your life? They ask you to define your wishes, your goals, and they strive to create a care plan that achieves what you want. 

What does a hospice patient’s goal look like? “My goal is to die without pain and in peace.” “My hope is that my family is taken care of after I am gone.” “I want to leave this world without any anger or regrets.” These resolutions emphasize the quality of our life . They emphasize respecting our dignity and individuality, our beliefs, and they give us comfort in the final phase of life. 

There’s a terrible myth out there that by choosing hospice care, people are giving up. Defining our goals for the end of life, though, helps us realize that we’re not giving up. We can still accomplish something during the end of life journey, and choosing hospice care means letting a team of people support you and help you accomplish your final life goals. So far, during my short time working in hospice, I have heard wonderful stories from hospice professionals about reuniting families, providing much-needed relief and support to primary caregivers, and supporting hospice patients and loved ones through the end of life journey into a peaceful death. That is our goal—to provide you and your loved ones with superior hospice care.

What are your goals for the end of life? How can hospice services help you achieve those goals?

By Carrie Bui, Communications Specialist

Friday, December 23, 2011

Friday Five Focuses on Family Caregivers' Needs

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

1. If you're a caregiver, or a family member of a caregiver, remember these points from this Nevada Appeal article this holiday weekend, "Caregiving Over the Holidays." Perhaps the best gift you can offer a caregiver is a little extra support, a good ear, and some respite from their daily duties.

2. Speaking of gift ideas for caregivers, AARP Caregiver blogger Amy Goyer compiled a two-part Christmas wish list. The first part of her Caregiver's Christmas Wish List offers the more intangible gifts she would like as a caregiver for her aging parents. Use this list to help inspire the thanks you offer to the caregiver in your life, and let's remember that this wish list is probably good any time of the year, not just Christmas.

3. There's always going to be day when it feels like just a little too much. The National Family Caregivers Association offers some messages to live by. When it gets a little hard, when you're not sure you can do it, read NFCA's Believe in Yourself.

4. Dementia is a complicated and heartbreaking disease, especially hard on family caregivers. Read the Family Caregiver Alliance's Guide to Understanding Dementia Behaviors for helpful suggestions on communication and managing difficult behaviors.

5. Subscribe to our monthly e-newsletter, Because Every Day Counts! The newsletter offers lots of handy tips for family caregivers.

Wednesday, December 21, 2011

The Wednesday Image: Happy Holidays!

Winterhaven Festival of Lights, Tucson, AZ
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 that represent what we love and appreciate most about life in Tucson.

Monday, December 19, 2011

Six Steps to Dealing with Grief During the Holidays

The holidays are supposed to be joyful and cheery, filled with family and friends.  Grief does not fit with this picture.  The losses that we experience after the death of a loved one thrust us into a painful, difficult, lonely journey.  Even if we feel we are moving forward and mourning with some sense of normalcy, it is as if our journey is stalled at the holidays.

What I know about this time, however, is that the journey continues.  Unless we are ready for what will occur, we can get swept up in the turmoil and chaos of the holidays, and we feel overwhelmed and more lost.

So what can help us through this time?

1. Be aware of what is happening.  Don’t avoid the holidays, but pay attention to the experience happening around you and most importantly, in you. Just as importantly, don’t try and do the holidays as if what is happening to you is not happening. To try and pretend that everything is the same as in the past can be harmful.
The feelings at this time are often very intense, even greater than you may expect. Don’t hide from your feelings.  Let yourself cry if you feel like crying; laugh if you feel like laughing; yell if you feel like yelling.  Feel your feelings and know that they are ok, and don’t let other people tell you what you should or shouldn’t feel.
2.  Plan for the journey through the holidays.  Even over-plan your time.  Prepare in advance for what you think may be a stressful time.  The past with all of its memories will propel itself into your experience. There will be times of panic when you are not sure what to do. Be willing to talk with others – your family or a close friend or a counselor and let them hear your plans.  Be flexible with your plans.  Give yourself the leeway to change them.
3. Don’t go alone during this time.  Seek out the company of others who support you.  Let this company be those who will talk about your loved one, who will acknowledge the absence and will let you express your feelings, tell your stories, share the memories and who will be willing to express their own.  Ask for what you want.  This is often hard to do, but your willingness to be open with your needs and wants will help you and others around you to be of support.
4. Take a new path that is different from what you traveled in past holidays.  You do not have to do the same things that you have always done to honor your loved one.    Seek out new ways of doing past traditions. Do something different. Reflect on the past traditions and rituals. There may be some that you want to continue and have the energy to do.  The important thing is for you to be in charge of your decisions. It is best not to make major changes during this time, but even small changes may help to make yourself comfortable on this new path.
5. Rest on the way lest you are physically worn out by the holidays.  Be gentle with yourself. Accept your physical limitations and that the energy it takes to mourn is still a part of this time.  Don’t get caught up in hectic holiday activities.  Get plenty of sleep, and take breaks away from the overstimulation of these days. Take a walk or take a nap and remember to breathe.
6. Be ready to be surprised by what might come your way.  It is possible you will be surprised by the pain of the holiday journey.  But it is just as likely that you will be surprised by the small bits of joy that creep in when you least expect it: the surprise telephone call or note from an unexpected source or an unanticipated invitation.  Be ready for those surprising moments of delight because you never know when they will come

 By Frank R. Williams, Director of Social Services

Friday, December 16, 2011

Friday Five: Health Planning

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

1. The Los Angeles Times' Steve Lopez did a wonderful article this week about the importance of advance directives. His article, "Having to think about the unthinkable" points out the need to discuss our final wishes and offers some advance directive resources.

2. I'm sticking with a theme for today, and that's advance directives. We continually encourage individuals to make sure they've considered how they would want to spend the end of their life, and then to share that information with their loved ones. And, then you need to go even further, and you need to write that information down, using a legal document, and share it with your physician and your attorney. Here's an FAQ on Understanding Advance Directives so you can know where to start and why to start, today.

3. One of the big things, and seemingly simple things, is the need to designate a medical power of attorney, healthcare agent, the person who will make your medical decisions when you are no longer able. It's important to choose someone who knows your wishes, who will follow your wishes, who will take responsibility for them. And, if you are the medical power of attorney for someone else, those are the points you have to remember too. Caring Connections offers a thorough and helpful article on their website, Healthcare Agents: Choosing One and Being One. Use this a resource to help guide your decision.

4. For a little less reading today, how about a video to help start your advance directives conversation? Lindsay from Aurora Health Care in Wisconsin leads a series of videos about Five Wishes and advance directives. The videos are all about a minute to a minute and a half in length, and she answers some of the questions you're probably asking yourself. Try starting with this one: How does an advance directive help my family?

5. I'm hoping you're ready for this link now, that you have a clearer understanding of advance directives, why they're important, and you're ready to discuss your end of life wishes now. Let the Casa de la Luz Foundation help you out by providing you with a free copy of the Five Wishes. You can submit a request online to have a hard copy mailed to you, free of charge, you can call the Foundation at 520-544-9890 to ask for a copy, or you can use the link on our website and fill out the Five Wishes online.

Wednesday, December 14, 2011

The Wednesday Image: Foggy Morning

Sun trying to break through the fog, Tucson, AZ
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 12, 2011

Explaining Hospice Services

Hospice care is a philosophy of care dedicated to treating the patient as a whole person. This means that hospice services are designed to meet a patient’s medical, emotional, psychological, and spiritual needs. They also provide support to the patients’ loved ones through education and bereavement counseling.

Hospice care is covered under the Medicare Hospice Benefit, and is also covered by Medicaid and private insurance plans. Patients are considered hospice appropriate when a physician has certified that a patient is terminally ill with six months or less to live, if the illness runs the expected course. Patients who choose hospice agree to forgo any treatments designed to cure the terminal illness. 

Hospice care focuses on providing comfort care, by providing pain relief and managing symptoms. (Medicare continues to pay for covered benefits for health problems that are not related to the terminal illness.) Hospice services are not limited to a set amount of time; care continues as long as the hospice physician recertifies that a patient is terminally ill.

What do hospice services include?

A hospice patient receives regular visits from a nurse who works closely with the hospice physician to manage symptoms in order to ensure the patient is comfortable. Hospice services also include social services support from a licensed social worker, and spiritual counseling is available, if the patient desires it. 

The hospice benefit includes the medications necessary for pain relief and symptom control, and the medical supplies and equipment needed for the patient to manage their terminal illness in the comfort of their own home. Home is defined as wherever the patient resides, whether it’s a private residence, assisted living facility, adult care home, or a nursing home.

Casa de la Luz Hospice also offers Arizona’s first residential hospice home, Kanmar Place. The home is licensed as an assisted living home, but all of the residents at Kanmar are hospice patients. They receive care and support from the interdisciplinary team as well as Kanmar’s certified caregivers.

A home health aide is available to make regular visits and assist with personal care needs such as bathing and grooming. A hospice volunteer can be provided to offer companionship to the patient and respite for the caregiver.

When symptoms are too difficult to manage at home, many hospices have an inpatient unit available to provide acute symptom management. If the symptoms are stabilized within the inpatient unit, the patient can return to the comfort of their home. The Casa de la Luz Hospice Inpatient Unit offers nine private patient rooms and is conveniently located adjacent to Northwest Medical Center.

Grief support services are available to the family and loved ones after the patient’s death. Casa de la Luz Hospice offers a variety of bereavement services, including one-on-one counseling, grief and loss support groups, and a public memorial service twice a year to remember the patients who have died in our care.

If you’d like more information about hospice, please talk to your physician or contact Casa de la Luz at 520-544-9890 or info@casahospice.com.

by Carrie Bui, Communications Specialist

Wednesday, December 7, 2011

Friday Five for Caregivers of Elderly Parents

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

1. In today's tech-heavy and tech-savvy world, people are finding new ways to connect with one another, utilize resources, and make tasks easier or more efficient. American Medical News posted an interesting article this week about "How technology can connect doctors and caregivers." As a family caregiver, have you ever considered what it would for your responsibilities if you could use technology to supplement care and stay organized and connected to your loved one's physicians or the other individuals who might provide care to your loved one? This article explores the concept. Do you already use technology to do that? Leave us a comment and share your tips for utilizing tech tools to manage caregiving.

2. My constant favorite blog, The New Old Age from the New York Times, had an entry this week about this fun sounding project called The Legacy Project: Lessons of Living from the Wisest Americans. The project comes from a Cornell professor who collected advice for living from America's elders. Individuals, seniors in their 70s and beyond, share their advice, their tips, their wisdom. You can check out the website with stories, audio interviews, and videos of the elders or you can pick up the book version, 30 Lessons for Living: Tried and True Advice from the Wisest Americans.

3. AARP recommends that now, the season of holiday get-togethers, is a good time to check in and see how your older relatives are doing. The article, "Holidays are a good time to assess how your elderly parents are faring," addresses four key areas to observe. Your relative or parent may not have noticed or acknowledged that there could be a potential need for additional assistance.

4. There was a fascinating article this week that's been passed around the hospice and palliative medicine community on Twitter. It comes from Zocalo Public Square and is entitled "How Doctors Die." It's an interesting look into what doctors choose for themselves in regards to the end of life, and how that differs from what the end of life looks like for the average Joe patient. The article states, "Of course, doctors don't want to die; they want to live. But, they know enough about modern medicine to know its limits." If that's the case, then why do so many physicians go to the extreme measures to prolong a patient's life, often at the expense of quality of life? Education and awareness will be the key to helping patients and physicians discuss death.

5. We're always looking for useful resources online to recommend to family caregivers. This week I found this PBS website, Caring for Your Parents. Those who are new to caregiving, especially for an aging parent, will appreciate the site's Caregiver HandBook. You can read through the quick guide online or just to download it as a PDF document.

The Wednesday Image: Fresh Fruit

Pomegranate tree at Tohono Chul Park, Tucson, AZ
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 5, 2011

Tips for Caring for an Ill Loved One at Home

The veteran home care nurse and the rookie nurse entered the home of a woman who needed daily IV antibiotic therapy.  As he washed his hands, the nurse asked about the patient’s garden, and they shared garden secrets while he got a wire hanger from the closet, attached the IV bag and hung it on the curtain rod.  As the two debated fertilizer versus compost, the nurse hooked up the IV and then turned the conversation to the woman’s health.  I, the rookie, was in love…with home health. 

Home health and home hospice are about the patient and family, and about bringing services into their home.  The goal is to discover what people need, to empower patient and caregiver, and to give them what they need in the least invasive and most respectful manner possible.

Family caregivers need wipes, gloves, and skin cream.  They also need to be taught skills and given the tips to make living with illness and caregiving easier.  Here, in no particular order, are some helpful hints and tips from a nurse who fell in love with home care 15 years ago.

  • Olive oil is a great lip balm.
  • A box of baking soda absorbs odors.
  • Have hand sanitizer near the front door and tell everyone to use it.
  • Buy a dozen or more washcloths at the discount store.  Cheap ones get softer faster.  They’re great for cooling a hot brow, wiping a sweaty back and cleaning the diaper area.  Launder in hot water with soap and bleach.
  • Sippy cups are handy and less messy than straws.
  • Call bells.  Jingle bells.  School bells.  Whistles.  There are so many choices.  Consider a wireless door bell.  The caregiver can carry the bell in a pocket anywhere in the house and often in the yard. 
  • Designate shelves or drawers for supplies and health care paperwork. 
  • Keep a notebook or whiteboard to write down needs and questions for the nurse, social worker, or home health aide.
  • Take pain medicine when pain starts.  Most pills take about 45 minutes to work.  When you wait until “it really hurts,” it usually takes more pain medicine over time to get you comfortable.
  • Children often feel scared and helpless around sick people.  Give them a job and let them know how it helps Grandma or Tio.  Tiny children can fetch a washcloth or pat a hand.  Little children can draw pictures and put lotion on Auntie’s hands.  Older children can keep cool water at bedside or make a sign telling everyone to use hand sanitizer.  Teenagers can get a cup of ice chips at the convenience store and do nail care.  Assign tasks according to the age and temperament of the child.
  • Music that the patient likes is soothing.
  • Every time you turn the patient, use a damp washcloth to wipe their back.  If they need it, apply lotion, cream, or powder.
  • Laugh.  Laugh with one another at all of the awkwardness and absurdities.  See the humor in mistakes and misunderstandings.  Allow jokes to help you deal with the horror of disease (one family called Mom “Lefty” after her mastectomy) and the messiness of illness. 
Life is messy.  Illness, caregiving, dying, and grieving are some of the messier parts of life.  None of us can do it alone.  Not even you!  So please, do the people who want to help you the honor of asking for help.

By Mary Toren, RN

Friday, December 2, 2011

Friday Five for the Family Caregiver

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

1. I was completely absorbed by this article in Salon, "The dilemma of taking care of elderly parents" by Lillian Rubin. It's a wonderful article, written by an elderly parent with a middle-aged daughter who tries to stick close by and call more often as her mother ages. Thanks to the writer's personal perspective, the article highlights the struggle between the still healthy, but aging parent, and the sandwiched son/daughter balancing work, family, and the worry of keeping an eye on that aging parent.

2. The Chicago Tribune took some time this week to recognize that caregiving is not always a responsibility left to blood relatives. Their article, "In caregiving, bond is often more important than blood," highlights the fact that many of us might rely on help and care from neighbors and good friends, people we're close to and who might feel like family, but aren't actually related. The article includes some good advice on putting caregiving agreements into writing, so that both parties can be protected later.

3. Open enrollment for Medicare ends December 7. If you have not yet enrolled, and are trying to navigate your way through what it will cost you, how to apply, and the benefits of the Medicare plans, visit Medicare.gov, the government's official website for Medicare. On the site you'll find videos, articles, and you can fill out your application online.

4. Family caregivers typically are juggling multiple responsibilities, and may not have the time or the freedom to stay home with an aging loved one. Many choose to hire outside assistance, but when you're inviting someone into your home, to care for your elderly mom or dad, you want to know you're making the right decision, trusting the right person. This Pathfinders fact and sheet, "Managing Care Helpers in the Home," is a simple Q&A format with valuable guidance about what information to convey to a care helper and warning signs of abuse, neglect, and/or exploitation.

5. It must be the holiday season because the weather in Tucson went from gorgeous to gloomy overnight. Have you started your gift shopping yet? (Don't worry, I'm not finished shopping yet either.) Here are some good gift suggestions for the family caregiver in your life from Caregiving.com. This year, why not give them a gift that will really help them?

Wednesday, November 30, 2011

The Wednesday Image: Bear down, Arizona!

Image taken by Brianne Pekar, The University of Arizona

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, November 28, 2011

Hospice Volunteer Testimonial: Spiritual Nourishment

Hospice volunteer work is not about death. It is about life. It is about the moment, the hour, the time you spend serving. When I signed up to train as a volunteer, I did not know if I could do it. Our society does not spend much time, money, energy, or thought on our last days, thus my knowledge of the process was minimal. Having trained and experienced firsthand the process, feelings, and journeys of others’ ultimate passage has made me a much more thoughtful and wise person. My experiences have made me a better husband, father, and friend. What is really important has surfaced. My life has more value.
As my life and schedule have changed during my volunteering, people ask me if I plan to continue to volunteer, or if I have time to volunteer still. My answer is that I cannot imagine not volunteering. It is a part of me. It is an intricate part of my life--my spiritual nourishment. It is a great gift to me. My greatest hesitance or fear is that I am getting more out of it than I am giving.
Casa de la Luz has clearly put so much into their organization, and that makes me feel as I do about volunteering. The training is thorough, and the staff is superb. The best part of my day is when I meet someone and share that I am a volunteer at Casa de la Luz Hospice. There is usually a pause, a clarity in their eyes, as if refocusing, and then the conversation continues almost on a different level. They automatically know something about your heart and about who you are. They know you are real.
By Luis E. Perez, Volunteer

Friday, November 25, 2011

Friday Five: Caregiving, Listening, and Planning

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

1. Alzheimer's disease is exhausting--mentally, physically, and emotionally. How do you care for a parent who no longer recognizes you or manage the outbursts and wandering that can accompany Alzheimer's? AgingCare.com offers a new section on their website, The Caregiver's Guide to Alzheimer's Disease. Read articles and tips about the warning signs, how to tell family, how to control wandering, and more.

2. Speaking of guides, the Family Caregiver Alliance offers a pdf download of the Handbook for Long Distance Caregivers. Long distance caregiving isn't uncommon as families have spread out more. Aging parents decide to move to a warmer climate, or to a smaller city with a slower pace; children grow up and leave for bigger cities, new jobs, an urban lifestyle. Use this handbook to help you figure out where to start, how to pay for care, how to balance work and caregiving, and more. The checklist of care needs might be especially helpful in figuring out what you and your parents will need in terms of daily living and health assistance.

3. Today is the National Day of Listening, sponsored by StoryCorps. The National Hospice and Palliative Care Organization has made the National Day of Listening part of the celebration for National Hospice Month. StoryCorps encourages everyone to take the day after Thanksgiving as an opportunity to listen and record an interview with a loved one. Sharing our stories and recording them allows us to preserve memories and our legacies. Life review can be an important and emotional act, especially at the end of life. The National Day of Listening site suggests some great questions to help you get started.

4.Yesterday was a day to offer thanks for the blessings and the people in our lives. Hundreds of thousands of people in Arizona deserved special thanks yesterday. They are the estimated 850,000 unpaid family caregivers described in USA Today's article, "Unpaid family caregivers' work deserves applause." These caregivers are often part of what has been nicknamed the "sandwich generation." They are adults sons and daughters who balance caring for their families and their aging parents and work. If you know a family caregiver, please don't forget to offer them a few words of thanks.

5.The Associated Press had an article last week, "End-of-life documents not a huge concern for many boomers," and in it, a few baby boomers talk about how they feel healthy enough to not have a living will. Do you know any baby boomers like this--active, healthy, and not interested in filling out a living will? We try and stress constantly that even if they don't have need for one now, it's better to be prepared than when a crisis occurs.We believe filling out your advance directives is just about being prepared for the worst case scenario. Consider filling one out today.

Monday, November 21, 2011

The Wednesday Image: Keeping Watch

Image taken by Crystal Cannon, Arizona-Sonora Desert Museum

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.

A Thank You Letter to Family Caregivers, Hospice Professionals

In today’s entry I’d like to take a few minutes to recognize that November is both National Hospice & Palliative Care Month as well as National Family Caregivers Month. These two categories are actually closely intertwined, because hospice and palliative care patients and professionals rely on the attention, dedication, and sacrifice of family caregivers.

There are roughly 65.7 million caregivers in the U.S., caring for someone who is ill, disabled, or aged, according to the Family Caregiver Alliance.

Every day we meet families, terminally ill patients and their loved ones, in need. Our nurses, certified nursing assistants, social workers, and chaplains provide support to our patients and their primary caregivers. But an integral part of what makes hospice care such a beneficial service is the help of the primary caregiver(s).

It’s a common misconception that hospice care is around-the-clock care. In routine home hospice care, the hospice interdisciplinary team works with the patient and caregiver(s) to develop a plan of care, one that meets the patient's goals. The team then educates the patient and the patient’s caregiver(s) on the illness, caregiving, and the end of life journey. The hospice team makes regular visits to the patient, based on the care plan and the patient’s needs. An after-hours team is also available to support the patient and caregiver(s) if questions or a crisis situation occurs. Through this team approach, terminally ill patients can keep the option to spend their final months in the comfort of their own home. (Many hospices, including Casa de la Luz, have an inpatient unit option if symptoms cannot be managed at home).

I'd also like to recognize my fellow hospice professionals. I admire hospice workers for their ability to sit with families during such a difficult time, and I think we need to commend hospice workers for being able to openly face and discuss death and dying, a topic that most people try to keep an arm's length away. I can't think of anything more comforting at the end of life than the compassionate, expert care my colleagues provide.

Do you know a family caregiver or a hospice professional? Take a moment this month and let them know you recognize their efforts and their work. Today’s a good day to ask how they’re doing. 

Thanks to all of the family caregivers and the hospice care workers out there. I admire you.

By Carrie Bui, Communications Specialist

Friday, November 18, 2011

Friday Five: Helpful Links for the Aging

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

1. I love the New York Times' The New Old Age blog. The entries are so easy to read and always informational. This week Paula Span, one of my favorite contributors, writes about the conversation many doctors won't have with their patients. All too often, we see patients referred to us too late, or doctors who insist their patients are not hospice appropriate. The fact is, we all will eventually have to face the end of life, and it's much easier on everyone if we can have a say about what matters to us in the final months, quality of life or quantity.

2. Medicare Open Enrollment closes on December 7 so now's the time to finalize your decisions about your healthcare options. There's a handy Medicare Open Enrollment website that can help answer your questions.

3. We want to make sure family caregivers are finding the support they  need, and there's plenty of advice out there. In honor of National Family Caregivers Month, Psychology Today published a great article, Ten Tips for National Family Caregivers Month. There are six tips for caregivers, and then four tips for supports of caregivers.

4. Family caregivers are often thrust into the role of caregiving with little preparation and guidance. Know about the resources that are available to assist you and your loved one. Find information about Tucson resources on topics such as care management, financial assistance, support groups, and more on the Community Programs page of our Living with Serious Illness website.

5. Have you planned for what will happen as you age? The time to make decisions is before a crisis situation happens, so that all family members can be prepared and individual wishes can be followed. U.S. News and World Report reported in their blog, The Best Life, that Family Caregiving Needs Likely to Soar as our country's senior population continues to grow. Sit down with your family to discuss your potential needs as you age, and use some of the bullet points in The Best Life's entry to guide your discussion.

Wednesday, November 16, 2011

The Wednesday Image: Bobcat Neighbors

Bobcat strolling through a Tucson neighborhood
Image taken by Natalie Ronstadt

Monday, November 14, 2011

Honor Flight Network Experience

World War II was a dark time for our country.  Our very existence as a free nation was threatened.  At the end of the war more than 400,000 of our military had given their lives in order to preserve our freedom.  Many more came home with scars that would never heal – both physical and emotional, but they returned to their families, picked up their lives, and carried on.

Today, our World War II veterans are dying at a rate of 1,000-1,500 people per day.  Most have never seen the memorial in Washington, D.C. that honors their fight for freedom.

Honor Flight Network is a non-profit organization created solely to honor America’s veterans for their sacrifices.  Arizona is the 28th state to set up a hub and is part of the national network.  Their goal is to fly as many WWII veterans from Arizona to Washington, D.C. to see their memorial without any cost to the veterans. Priority is given to those who are disabled or terminally ill.

On Wednesday, September 21, I was once again honored and privileged to be a “guardian” and medical support on an Honor Flight with 30 World War II veterans from the Tucson area and approximately 20 guardians.

World War II Memorial, Washington, D.C.
Thursday was a full day with visits to the memorials for World War II, Vietnam, Korea, Iwo Jima, Women in the Military, and Air Force. We also watched with awe the changing of the guard at Arlington Cemetery.  I stood at the Korean War Memorial by one veteran with tears in his eyes as he recalled how alone and scared he had been during combat and remembered his fallen comrades.  Many others told stories of flying bombing missions or being hit by shrapnel.  Memories, once buried, came flooding back.  We guardians were there—to listen, offer comfort or just be with them silently.

Everywhere the veterans went they were greeted with applause and cheers, which again brought tears to their eyes – long awaited recognition for their service to our country.

With as many tears that were shed (by all of us) there was just as much laughter and camaraderie.  This is my second Honor Flight, and I am again amazed by the strength, determination and passion these folks have, both for life and country.  Most are in their late 80s and there were five over 90 years old on the trip.  My veteran, the only female, was a WAC and Captain – almost unheard of back then.  She will soon be 92. 

I am humbly honored to have been in their presence and feel so very fortunate to have taken this walk through history with them. The Greatest Generation?  Absolutely. This Honor Flight trip again reminded me why.

For more information on Honor Flight, go to www.honorflightsaz.org.

by Jana Davis, QAPI department

Friday, November 11, 2011

Friday Five: Caring for Veterans

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

1. Veteran's Day is a day to honor and recognize the men and women who have served and sacrificed for our country. Take a few minutes today to read this short fact sheet from the Hospice Foundation of America about Veterans & End of Life Care. Let's work together to better the care we offer to this unique patient population.

2. Here's an article from the Des Moines Register about how Iowa veterans volunteer to help veterans in hospice care. The shared camaraderie between a veteran volunteer and a veteran hospice patient can help create a safe environment for the patient to share their military experience.

3. The Department of Veterans Affairs has recently expanded their efforts to recognize caregivers of veterans. If you are a family caregiver for a veteran, visit the VA Caregiver Support website for information, resources, and to find your local Caregiver Support Coordinator. We recognize that family members and loved ones of veterans often make great sacrifices too.

4. We suggest that all veterans take the time now to register with their local VA. People in the Southern Arizona area can register with the Southern Arizona VA Health Care System. Did you know that every veteran enrolled in the VA system is entitled to hospice care paid for or provided by the VA, regardless of category or service connection?

5. Every day, hospices around the country are caring for people facing the end of life. Roughly a quarter of all deaths in the U.S. are veteran deaths. As services, people, and organizations around our country today recognize Veteran's Day, those of us in the hospice community need to remember that "Honoring Our Veterans Includes Caring for Them at the End of Life."

Wednesday, November 9, 2011

The Wednesday Image: First Snow

Snow dots the Catalina Mountains, Tucson, AZ, Nov. 2011
Image taken 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 featuring images that represent what we love and appreciate most about life in Tucson.

Monday, November 7, 2011

Remembering Veterans

This Friday Nov. 11 is Veteran’s Day. On this day I ask that you take the time to remember our country’s veterans, the brave men and women who served in our military.

Did you know that Veteran’s Day actually started out as Armistice Day? The day recognized the ending of World War I fighting at 11 a.m. on Nov. 11, 1918, and Congress recognized it as a national holiday in 1926. Congress proposed changing the word Armistice to the word Veterans after World War II, and President Eisenhower signed the bill approving the change in 1954.

Now, each year Veteran’s Day is an opportunity to honor and recognize our nation’s veterans, for their hard work, their sacrifices, and their devotion to the military and the United States. 

I mentioned several entries ago that I am only just beginning to learn about veteran and military culture. In recognition of this week’s holiday, let me give you a little bit of the information I have already learned.

The projected veteran population from the Department of Veterans Affairs as of 9/30/2010 is 22,658,000, and 28 percent of all deaths in the United States are veteran deaths.

Last week, the Tucson community had the opportunity to listen to Deborah Grassman, a respected hospice nurse with 30 years of experience with a VA hospice in Florida. She wrote a book, Peace At Last: Stories of Hope and Healing for Veterans and their Families, and shared the experience and knowledge she’s gained in working with veterans at the end of life. Her presentation helps hospice professionals understand the varied perspectives veterans have, and in understanding how the war experience can help shape a veteran’s end of life journey. 

Within hospice, we’re seeing a lot of World War II veterans, as well as some Korean and Vietnam War veterans. Each war era left unique effects on its veterans. For example, World War II veterans were celebrated for their efforts. They are also at risk for infectious diseases, suffered frostbite, and were exposed to nuclear weapons. However, this was not the case for the soldiers who served in the Vietnam War. These veterans experienced a very negative atmosphere when they returned home, and many talk of the solitude of being a soldier in the Vietnam War. As a result, these veterans often suffer from significant mental health and substance abuse issues. 

These are just a couple examples of veteran experiences, and it should be noted that not every veteran suffers from these post-war issues. Grassman defines three possible trajectories for veterans after a war: successful integration, apparent integration, and not integrated. As professionals, we need to tread carefully to discover the trajectory that our patients are on. We need to continue to educate ourselves about this unique patient population, and strive to give them the good death each person deserves.

If you have the opportunity this week, if you know a veteran or just bump into one at the store, remember to say thank you for your service. 

By Carrie Bui, Communications Specialist

Friday, November 4, 2011

Friday Five for Family Caregivers

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

1. The National Hospice and Palliative Care Organization proclaimed November National Hospice and Palliative Care Month. Read their proclamation on the NHPCO website.

2. It's not easy being a family caregiver, especially as your loved one nears the final phase. This article, "Caring for Someone Who is Dying" from the Hospice Foundation of America, can offer some information and guidelines that can help you during this difficult time.

3. You know your parents can no longer live on their own. They need more attention, and your house is too small, and you work full-time, and you'd feel better knowing they're under professional eyes. But where do you start? The Assisted Living Federation of America can help give you a listing of facilities in your area and the Senior Living Options section will help you understand what you're looking for, and the questions to ask when choosing a community.

4. Do you know a video-savvy teen, a filmmaker to be, who has also been affected by Alzheimer's? The Alzheimer's Foundation of America has made it a goal to bring more attention to the fact that as more people suffer from Alzheimer's, the effects reach farther out into families, and ultimately, more and more teens. The AFA Teens division is launching their second video competition and inviting teenagers to submit video submissions about a moment in relation to Alzheimer's disease. Learn more about the competition at the AFA Teens website.

5. This is a wonderful written op-ed piece from the Helena Independent Record this week explaining why accepting hospice care does not mean giving up. This is a common reaction from most people; we can't help it. We're a nation that fears death, but being open to hospice care can give us the space to look at death in a whole new way, as a final phase, as a journey, as a peaceful process.

Wednesday, November 2, 2011

The Wednesday Image: Hidden Wonder

Caterpillar perches among the branches at Tohono Chul Park
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 featuring images that represent what we love and appreciate most about life in Tucson.

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.