Friday Five: Serious Illness for the Caregiver Perspective

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

1. I was really touched by this article in the Atlanta Journal-Constitution this week, "Caregiver's anguish: I need to be 2 people." Family caregivers who have struggled with the question of whether or not to put a loved one in a care facility and/or have juggled the demands of elderly parents with the needs of their children will respond to this article and Alicia Beckett's story.

2. We know that plenty of misconceptions about hospice exist, and so it's always a pleasure to read a news story that gives an accurate portrayal of hospice care. This article, "Mary Carlson, hospice nurse, eases final journey for patients and their families," by David Stabler of The Oregonian, does a really nice job of painting a picture of what happens when hospice becomes involved. If you're looking to understand what hospice care is, or how it might help you or your family, this personal story offers a little insight into the perspective of a hospice nurse and a family receiving hospice care.

3. One of the leaders in the hospice and palliative care community is Dr. Ira Byock, author and director of palliative medicine at Dartmouth-Hitchcock Medical Center. He was on NPR's Talk of the Nation this week discussing his new book, The Best Care Possible and end of life care. Learn more about how we can approach end of life care, and how we can discuss death and dying through this article and interview, "Best Care: We Make Death Harder Than It Has To Be."

4. Many people find it helpful to talk with others who are facing a similar situation or circumstance. If cancer has affected your life, you can find support group options from CancerCare. They offer online and telephone support groups, and they provide face-to-face support groups in the New York City, Long Island, New Jersey, and Connecticut areas or will connect you to groups in your area.

5. Are you caring for a parent or a spouse with Alzheimer's disease? How's your stress level doing lately? It's always good to do a mental check-in with yourself every once in awhile. Take this stress check questionnaire from the Alzheimer's Association, and then based on your answers, they'll provide you with a list of helpful resources.

The Wednesday Image: Spring Flower

A flower blooms in Marilyn Hansen's garden.

Marilyn Hansen is the Assisted Living Liaison for Casa de la Luz Hospice.

Image taken by Marilyn Hansen

Casa de la Luz Hospice Reaches Level 2 in We Honor Veterans Program

Casa de la Luz Hospice is pleased to announce that it is now a Level 2 partner in the national We Honor Veterans program. The hospice joins 91 other hospices in the country at this level.

To fulfill the Level 2 requirements, the hospice continued to expand its veteran-specific educational offerings to employees and volunteers. Hospice staff also continued to honor veteran patients through an appreciation ceremony, presenting the patient (or family, if a ceremony was conducted posthumously), with a framed certificate of appreciation and a blanket representing the patient’s branch of service. 

As a partner in the We Honor Veterans program, Casa de la Luz Hospice recognizes the unique needs of veterans facing the end of life. The military’s strictly defined culture, the dangerous assignments, including combat experience, prolonged family separations, and other factors can affect the veteran’s perspective at the end of life. 

Casa de la Luz Hospice is committed to expanding veterans’ awareness of the benefits of hospice care, and to continue educating employees and volunteers about the veteran population. We are honored to have the opportunity to provide care to our former service members. 

We look forward to reaching levels 3 and 4 through community outreach, staff in-services, the development of a vet-to-vet volunteer program, and implementing policies and procedures that recognize our veteran patients.

If you have any questions about the national We Honor Veterans program, visit the website at www.wehonorveterans.org. For questions in regards to the We Honor Veterans program at Casa de la Luz Hospice, contact Carrie Bui at 520-544-9890.

Friday Five Cares About Caregivers

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

1. We encourage family caregivers to acknowledge any need for assistance. Caregiving is hard work, but it's not something you have to take on by yourself. Caring Connections offers this great bullet point list of ways you can make your needs known. Acknowledge your need for help, then turn to this list for an easy way to figure out where you can utilize the assistance of another loved one.

2. This link will take you to a short series of videos about caregiving from Be Smart. Be Well. Learn more about what you can do as a caregiver, and watch the stories of other individuals who are providing care to a loved one. You're not in this alone.

3. We're always interested to hear about the new ways people prepare in advance for aging and serious illness. The New Old Age blog, always on the edge of aging-related news, reported this week about "Care by Consensus." It's a method just barely being used and being suggested to those with few family members and no children to care for them in the later stage of life. There are some interesting pros/cons suggested in the article based on some personal anecdotes. The way we see it, you should always be prepared and you should be updating your healthcare plans at least annually, to accommodate any changes.

4. NHPCO and Caring Connections also have teamed up to launch a new campaign, LIVE Without Pain. You can find resources about pain management, caring for others, and storage and disposal of medications. This is a brief, but great article about talking to your doctor about your pain. The article lists not only the questions you should ask your physician, but also the questions your doctor might ask you about your pain.

5. Are you trying to explore if hospice care is the right option for your loved one? Do you want to know what kinds of services hospice might provide? Casa de la Luz Hospice serves the Tucson metro area and its surrounding communities, including Oro Valley, Marana, Catalina, Rita Ranch, and Vail. We offer a complete array of hospice services, including Tucson's only residential hospice home. Learn more about Casa de la Luz' hospice services at our website, then call us at 520-544-9890 with any other questions or to schedule a meeting with one of our nurses.

The Wednesday Image: March Madness

Snow-capped mountains in March, Oro Valley, Arizona

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

Hospice Experience: An Honor, Privilege to Serve Families

Working with patients and families who are living with dying has taught me so many valuable life lessons.  I have the privilege of coming along side a family at a sacred life passage.  I have found this to be a time that people are processing their life and relationships. Things that loomed large in their life change in scope as they face profound change.  Hospice offers such tremendous support for the patient and family on physical, emotional, and spiritual levels.  We are able to come along side a family, embracing and acknowledging people in their own unique culture or tradition. We are able to promote a higher quality of life for the whole family system as they work on the most fundamental issues together. 

I have had the honor of watching a family of sisters honoring their mother by sitting vigil.  Taking turns in pairs recounting stories of their childhood in the presence of their mother.  And a son, coming in each evening after work to sit with his father, sharing with hospice staff the values he credits his father with instilling in him.  And the mother, so torn by grief that she cannot bear the undertaking of sitting with her dying son so hospice volunteers share the weight for her. 

In these and all the stories in my memory, I have come to realize that it is important to embrace our differences and give ourselves permission to experience the journey of dying in our own unique way.  Quiet our minds, deepen our breathing, and allow love to flow unconditionally between us and our loved ones.

By Bonnie Fouts, Social Worker, Manager of Kanmar Place

Friday Five: Aging-Related Issues

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

1. There was a sweet article in this week's Tampa Bay Times about an 11-year-old girl who donated handmade birdhouses to patients at Suncoast Hospice. The fifth-grader's grandfather died under the care of hospice before she was born, but she remembers him by giving to the hospice. It's always a pleasure to read about how people give to hospice, especially when the gift is from such a young person.

2. Family caregivers might appreciate the free monthly webinars that Lotsa Helping Hands offers. This month, you can listen to the director of early stage initiatives at the Alzheimer's Association and a woman who is a caregiver to her husband, who is living with Alzheimer's. The webinar is March 22, and you can register for it on the website.

3. It probably comes as no surprise to you when I tell you there's some paperwork involved when someone dies. There's the stuff you can probably already guess at, like the will, maybe a trust, and some bank accounts, but have you realized how much paperwork there is? Paula Span writes about one family's experience in the New Old Age Blog, and gives a short list of what to deal with and tips on how to deal with it all. The family even penned a cute name for it all: administrivia.

4. If you haven't figured it out yet, we like checklists and easy to fill in forms that help guide caregiving responsibilities. Let's be honest, you can't remember everything in your head, and sometimes in appointments, you can get all spun around and lose track of what you wanted to ask. The AARP Caregiving Resource Center is full of helpful articles and lists, and this week, we found this handy checklist for what to ask when looking at an assisted living facility. Print the form, make a few copies, and take it with you to your appointments so that you get all of your questions answer and a place to make notes.

5. If you're new to Medicare, surf your way through the Medicare website for helpful information about getting started with Medicare, things you should do now, and information about how to choose and change coverage. The site also includes a wealth of additional resources including recent health news articles, a resource locator, and more.

The Wednesday Image Promotes Literacy in Tucson

A panoramic picture from the 2012 Tucson Festival of Books

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.

Tech Tools for Family Caregivers

When my grandparents were still alive, my parents and my extended family were always negotiating care of my grandparents. My mom worked the night shift, leaving her free during the day. It often fell to her to take her in-laws to doctor’s appointments, with my youngest sister (not even preschool-aged yet) in tow. Eventually, my grandparents moved in with one of my uncles, and he and his wife became the primary caregivers, balancing full-time work and caregiving, and then after the birth of their son, parenting.

Recent studies and articles have pointed out the financial, physical, and emotional toll caregiving can have on a person. The average family caregiver for someone 50 and older spends an additional $5,531 per year on out-of-pocket caregiving expenses, according to an AARP 2008 study. Caregivers also suffer from higher levels of depression, stress, and are at increased risk of heart disease, according to the Family Caregiver Alliance.

How can you balance caring for your family, your elderly parents, and your professional work life? I’m a big fan of figuring out how to utilize technology to help in everyday responsibilities.

Websites like Lotsa Helping Hands or Hospice Journey are caregiver-specific sites that allow you to create a website to track a loved one’s progress, manage multiple caregivers, and keep long-distance friends and family up-to-date. And speaking of keeping in touch, new tools like Hangouts by Google+, Skype, and Apple’s FaceTime  make it easy to see family members during a long-distance conversation. Long-distance caregivers might use these tools to keep an eye on Mom and Dad, or maybe it’s just a way for siblings to stay in touch with the primary caregiver. These would have been great tools for my parents several years ago, after we moved out of state, away from the rest of our family and my grandparents.

Has your elderly loved one filled out their advance directives yet? Have you filled one out yet? Last year, the Casa de la Luz Foundation also began offering the option to fill out the Five Wishes, an advance directive, online.

Search through your smartphone’s app market to find free or low-cost applications that can help you manage care. Utilize your phone’s calendar to track and remember appointments, or use the alarm function to set medication reminders. Use a business card reader app to keep track of your loved one’s various doctors. Do you fill prescriptions through Walgreens or CVS? Both of them offer apps that make it easy to refill prescriptions by just scanning the barcode. 

Make managing your household easier with a shopping list app, a budget app, and a bill pay reminder. Use a recipes app, like AllRecipes or Epicurious, to find new and healthy recipes to make at home. I’m sure my family would have appreciated quick tools like these when creating meals that were appropriate for my diabetic grandmother.

Take advantage of your tablet’s note-taking app, or download one like Evernote, to take notes at doctor’s appointments. You could also use an FTP service like Dropbox to upload your notes and share the files with other family members. It makes shared caregiving easier because you’ll all have access to a record of visits and contacts. Another great option is using Google Calendar and Google Docs so family members can know when appointments are, who’s going, receive reminders, and create and share notes about appointments.

Not every tech tool out there will be for you, but give them a whirl. Find the tools that help you stay organized, or the ones that make your life just a little more efficient. 

By Carrie Bui, Communications Specialist

Friday Five Talks About Dying

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

1. When it comes to hospice and palliative care, Dr. Ira Byock is a leader. He's the director of palliative medicine at Dartmouth-Hitchcock Medical Center, and he's preparing to release his third book, The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life. The Atlantic offered a wonderful, articulate excerpt from Dr. Byock's new book this week, "Making the Best of What is Often the Very Worst Time of Our Lives." The most striking sentence for me was in this article was "Dying is hard, but it does not have to be this hard." Share your thoughts in the comments below.

2. When you think about all the people out there, surfing the Internet, and then you think of broadcasting your feelings, personal thoughts, and personal experiences, it's two big things to weigh against each other. But there are tons of people out there, blogging everyday, and I'm always impressed when I stumble across such a personally written blog as this one, Dying Digitally. Doug Gosling is a 58-year-old man who has spent years fighting prostate cancer. He's made the decision to discontinue treatments and last month he entered the Dorothy Ley Hospice program and the Toronto Grace Palliative Doctors program. In his entries, he shares his end of life experience and his thoughts on life, death, and what might be next.

3. The March 2012 edition of the Living with Serious Illness newsletter was released this week. Read about 2011 tax breaks for family caregivers, how to deal with criticism, and recognizing and dealing with frequent infections in persons with dementia.

4. When your family member is facing the end of life, you may feel uncomfortable around them or uncertain what to do together. This is an opportunity to spend quality time together. If you are uncomfortable, perhaps it can help you both to focus on doing an activity together. This article offers just a few suggestions on activities to do with the dying, all of which are meaningful ways to honor the time you have left together and can help you honor your loved one after his/her death.

5. Are you a Pima County resident and interested in learning more about available hospice services. Casa de la Luz Hospice would be happy to answer all of your questions. You don't even need a physician to make a referral. You are welcome to call us to refer yourself, a family member, or a friend to our hospice services, and a nurse will evaluate your needs.

The Wednesday Image: Riding Through the Desert

A cyclist pedals through the Arizona desert for the 

Kona 24 Hours in the Old Pueblo bike race. 

Race proceeds are donated to the Arizona Cancer Center.

Image provided by Brandie Kiracofe

Hospice care teaches us not only how to approach death with dignity, but 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.

Facing Our Fear of Death

Recently, I arrived at a patient’s home for the first time and was greeted by her husband. He warmly welcomed me in and then asked me to remove my name badge that said hospice. He went on to request that I not mention the word hospice and that I not talk about death or dying. This caring and incredibly loving spouse felt that even the words hospice or dying might be too difficult for his wife emotionally, and he wanted to protect her. These feelings are not unusual and the desire to save our loved ones from unnecessary suffering is natural. But often by avoiding the very issues we most fear, we prevent the possibility of healing and wholeness that is possible even as we face the end of life.

We are aware that each person will face death. Most of us also, find ways to not think or talk about that reality. But when an individual is given a terminal diagnosis, there’s also an opportunity for open and honest dialogue with loved ones. By admitting that we are afraid, by naming our fears, we can begin to lessen death’s power to control us. Living with a terminal illness can bring a range of emotions from shock and sadness, anger and resentment, depression and hopelessness. All of these feelings deserve compassion and care; all deserve to be honored and nurtured. But only by first facing your prognosis can the hospice’s community of care begin the miracle of finding meaning and purpose that we all seek.

When we are told you only have weeks or months to live, we can feel stripped naked and vulnerable. But this experience of complete vulnerability can be the very gift we most need as we near the end of life. Letting go of the desire to protect and control opens the door for true and heart-healing dialogue. We realize that the gift of our total presence with loved ones is the most precious medicine we have. When we wash away all of the other distractions and protections, we can listen to each other and share with new openness. This gift of presence allows for the possibility of times remembered, love expressed, regrets acknowledged, forgiveness extended, and meaning revealed.

And by talking with our loved ones with compassion and loving kindness about the end of life, we also create a sacred space where faith can be present and where the spirit lives. In this sacred space we can ask the questions that are on our hearts, share beliefs that we hold, and raise understandings that may cause us anxiety. For when we are vulnerable to ourselves, to our loved ones, and to our faith, we see that our life can never be defined by a diagnosis or prognosis; it is defined by the life and love we share.

By David Fife, Casa de la Luz Hospice Chaplain

Friday Five: About Hospice and Caregiving

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

1. Have you ever considered what it means to live a day in the life of a hospice nurse? Here's an awesome story about Kim Crinella, a hospice nurse manager for an inpatient unit. "Hospice nurse manager earns trust of patients, families" is a lovely profile about a compassionate hospice nurse. For Crinella, "the goodness far outweighs the sadness" in hospice nursing.

2. The Deseret News is featuring a wonderful series, titled Life's Final Journey with six articles discussing death and dying. The second article, "How will I die: Finding hope in hospice" is a great story about how hospice can care for patients and their families. We would recommend this article for those who are trying to understand what hospice services include and if it's the right decision for you and your loved one.

3. The Hospice Foundation of America has a great audio webinar for family caregivers featuring advice on how to cope with the regular challenges of caregiving. The webinar is only 20 minutes, and there's an option to download an mp3 file. Download the mp3 and listen to it at your convenience.

4. A few weeks ago, we posted a link to an article by Sandra Tsing Loh in The Atlantic. If you read the article or if it touched a note, you might be interested in this NPR interview with Loh, "A Caretaker's Conflict: Love, Resentment Collide." It's a nice follow-up to the issues raised in the article.

5. We always try to recommend a couple resources for family caregivers, and this week, I want to recognize caregivers whose first language might not be English. As a Tucson-based hospice, it's not unusual for us to have non-native English speakers on our service. The Family Caregiver Alliance offers fact sheets for caregivers in Spanish and Chinese.