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, April 1, 2013

Our Blog Has Moved!

Please visit our blog at its new home, http://casahospice.com/news/, and make sure to reset your bookmarks.

Thanks for reading!

Monday, March 25, 2013

The Benefits of Hospice Care

Most individuals are a little fearful of hospice services. They fear dying, or of giving up on life. Here are some thoughts from hospice workers about how individuals can benefit from hospice care.

"I am in awe of the unique and compassionate care that hospice brings to families facing the end of life." -Carol Clark, Director of Volunteers

"By focusing first on what's most important to our patients, we can give them the opportunity to live their life while on hospice." -Lisa Daniels, Social Worker

"Working with the hospice team, we manage patients' complex medical issues, while also bringing compassion in order to meet each family's unique emotional needs." -Pam Aronson, RN

"It's all about the patients. We allow this person to be a human being and respect them where they are, and respect the families' differences and their grief." -Patsy Ticknor, Chaplain

Wednesday, March 20, 2013

The Wednesday Image: The Mountain View

Gates Pass
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, March 18, 2013

Tips for Managing Stress

Being someone's primary caregiver can mean putting a lot of additional stress on your life. Family caregivers are shown to have increased risk for depression and other physical health issues. Look for ways to manage your stress level so you can remain healthy and be the best caregiver you can be. Here are a few online resources with helpful stress management suggestions.

1. The American Psychological Association Stress Tip Sheet doesn't provide you with ideas for how to manage stress, but it does state a couple obvious tips that can be overlooked. Before you can fight your stress, you need to know your stressors and stress signals. Knowing these in advance gives you a little preemptive strike before you become overwhelmed.

2. The American Heart Association has a wonderful list of healthy habits to help fight stress. Maybe you can't fit all of them into your day, but applying just one or two could be just what you need to make the day a little easier. Simple ones to incorporate include numbers 3 and 4--accept what you cannot change and remember to laugh. Add more laughter into your day by hanging funny comic strips on the fridge or a funny Internet meme to your bathroom mirror.

3. The Benson-Henry Institute for Mind Body Medicine shares some benefits of eliciting your body's relaxation response. The relaxation response counterbalances your internal stress response. "The relaxation response is a physical state of deep rest that changes the physical and emotional responses to stress..." (Benson-Henry Institute for Mind Body Medicine). They offer two main steps for the relaxation response and some additional suggestions.

Compiled by Carrie Bui, Communications Specialist

Friday, March 15, 2013

Friday Five Links

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

1. CNN shared an excellent opinion piece from Joan Teno about giving patients their end-of-life options. As an hospice organization, we're continually asking ourselves about the points Teno makes in this piece. How can we give patients and their loved ones our full support when the patient dies within three days of the hospice referral? How do we change the focus from quantity of life to quality of life? The answers are complex and the problems won't be solved tomorrow, but we do hope we can continue to educate individuals about end-of-life options and continue to have a discussion about end-of-life care.

2. Recently some projects have popped up centering around how to encourage individuals to engage in discussions about end-of-life wishes. Here's another one that looks interesting: Death Over Dinner. They're still developing the site, but the idea sounds interesting and what's up is very visually appealing. We think this will be worth keeping an eye on.

3. What would you want written about you in your obituary? This obituary about Harry Stamps went viral due to its quirky tone. Death is sad; saying goodbye to the ones we love is sad. However, this daughter didn't let her dad's death change how people would remember her father.

4. Are you using Pinterest yet? The fast-growing network offers a visual and virtual bulletin board for almost everything, including tips for caregivers. We're impressed by The Caregiver's Survival Network's collection of boards and pins, with great suggestions for books for caregivers, a toolbox, inspirational quotes and images, and more.

5. Do you provide care to a loved one with Alzheimer's? Use this Caregiver Guide from the National Institute on Aging to help you with your caregiving duties.

Wednesday, March 13, 2013

The Wednesday Image: The Formation of History

Colossal Cave
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, March 11, 2013

Hospice Care FAQ

Who are the members of the hospice care team?

The hospice philosophy centers around the idea of whole patient care, provided by a team of professionals. The hospice care team includes a physician to oversee the team's care plan and an RN case manager to provide medical direction and care. A social worker and chaplain are also on the team to offer counseling as well as practical and spiritual guidance. The home health aide provides personal care assistance, such as bathing and grooming, and patients can also enjoy visits from a hospice volunteer for additional companionship. The family caregiver and other loved ones also benefit from the team, through education, emotional support, and some relief from caregiving duties. After the patient's death, bereavement support is also provided to the family and other loved ones as needed.

Is there any relief for the family caregiver of a hospice patient?

If the primary caregiver for a hospice patient is a family member or other loved one, respite care is available through the Medicare Hospice Benefit. Respite care offers the family caregiver a break from the daily responsibilities of caregiving. To give the caregiver relief, respite care may be provided in a Medicare-approved facility. This includes a freestanding hospice facility, a nursing home, or other long-term care facility. Respite care is covered by Medicare for up to five days at a time.

Why would a patient stop receiving hospice care?

A hospice patient has the right to stop receiving hospice care at any time, for any reason. If the patient chooses to stop hospice care, health care benefits from the standard or Medicare Advantage plan continue. On occasion, a terminally ill patient's health improves or the patient's illness goes into remission while receiving hospice care. A patient's condition may become stable to the point that the hospice team and physician(s) believe the patient cannot be certified as terminally ill (having a life expectancy of six months or less), and therefore, is no longer eligible for the Medicare Hospice Benefit. At any point in time, a patient can return to hospice care, so long as the eligibility criteria are met and certification by physician(s) and hospice team are received.

For information about hospice services in Tucson, Arizona, contact Casa de la Luz Hospice at (520) 544-9890 or visit www.casahospice.com.

Wednesday, March 6, 2013

The Wednesday Image: Office Visitors

Two bobcats strolling through Casa de la Luz Hospice's parking lot.
Image taken by Sarah Kelley

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

Monday, March 4, 2013

Frequently Asked Questions About Hospice Care

1. How do we pay for hospice care?
Hospice care is usually covered by your healthcare insurance. Individuals with Medicare can utilize the Medicare Hospice Benefit to cover the cost of care. The Hospice Benefit covers visits by the hospice care team as well as the cost of medical equipment and supplies and medications related to the hospice plan of care. Most private insurance plans will also pay for hospice care. To confirm, check with your insurance provider or with the hospice agency.

2. Will the Medicare Hospice Benefit pay for care in a facility?
The Medicare Hospice Benefit will reimburse for hospice services that are provided in long-term care facilities, such as assisted living homes and skilled nursing facilities. However, the benefit does not cover expenses for room and board. Long-term care insurance can help shoulder the cost of room and board in a long-term care facility, or individuals can investigate options for long-term care assistance from their state Medicaid.

3. How long can a patient receive hospice care?
A patient can continue receiving hospice care as long as the hospice physician continues to recertify the terminal illness. Patients receive two 90-day periods of care followed by an unlimited number of 60-day periods as long as the patient continues to meet Medicare criteria for eligibility. Hospice care is provided only to patients who have been certified by two doctors as terminally ill with a life expectancy of six months or less.

4. Can a hospice patient continue seeing his/her primary care physician?
Some primary care providers or specialty physicians may choose to follow their patients' care while the patient is on hospice. Others defer primary/attending physician care to the hospice physician. If the hospice physician serves as the attending physician, a patient may continue to see their PCP or specialist for care not related to the hospice diagnosis.

5. Will someone from the hospice be with the patient 24 hours a day?
Hospice support is available 24 hours a day, but a hospice worker does not stay with the patient 24 hours a day. Hospice patients should have a primary caregiver, usually a loved one or a paid caregiver, and hospice workers will supplement the care and support the patient and the caregiver. The hospice can be contacted 24 hours a day, 7 days a week if you have questions or are in a crisis situation.

If you have more questions about hospice services in the Pima County area, contact Casa de la Luz Hospice at 520-544-9890.

Friday, March 1, 2013

Friday Five: Links that Help

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

1. We've mentioned The Conversation Project in previous Friday Fives, and now there's a companion piece to the project about how to talk to your doctor. The toolkit of information offers worksheets, scripts, key terms, and more. Learn more about the project and the toolkit in the linked article.

2.  Not only is it important to do something, but it's usually even better if you can do it effectively. This blog article explains how that applies to end-of-life plans too. Your plans become more effective when you have a meaningful conversation with loved ones about your choices, when you choose a healthcare agent or medical power of attorney who would be willing to stay true to the choices you've outlined, and when you prepare for end-of-life needs before a crisis situation develops.

3. Given our work, you can imagine how glad we are to see End-of-Life Care recognized as a Great Challenge by TEDMED. Part of finding a solution to a problem is through open discussion. Check out the discussion that's happening on the TEDMED section, Coming to Grips with End-of-Life Care.

4. The official government website for Medicare offers a small handful of downloadable pdfs of helpful caregiver resources. The handouts cover the basics, from what you need to know to finding community resources to self-care. Caregiving is hard, but arming yourself with knowledge about it can strengthen your abilities.

5. We love these communication tips from the American Heart Association. Aside from just general communication tips, their tips are organized by who you're trying to communicate with. We appreciate that the association recognizes that your communication needs are different, depending on if you're talking to a family member or a healthcare professional.

Wednesday, February 27, 2013

Monday, February 25, 2013

Free Informational Event for Tucson Residents

Individuals interested in learning more about the planning process of creating a will or trust, as well as about planned giving, will be able to attend a free informational workshop on March 6.

Susan Villarreal, attorney at law and vice president of the Casa de la Luz Foundation board, will lead the discussion. Her presentation will highlight current law changes as well as introduce leaving a legacy to a charity of choice. The event, Write a Will: Leave a Legacy is hosted by the Casa de la Luz Foundation in partnership with the Community Foundation For Southern Arizona.

The workshop will take place on March 6 from 11:30 a.m. to 2:30 p.m. at 7740 N. Oracle Road. The workshop is free of charge and open to the public. A light lunch will be served at 11:30 a.m. Individuals are asked to call 544-9890 to register by March 1.

Friday, February 22, 2013

Friday Five: Caregiving and End-of-Life Planning

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

1. What's wonderful about the handful of writers out there who focus on caregiving is they always present a good picture of what it means to be a family caregiver. In this blog article, Paula Span points out that some individuals become caregivers because of duty, obligation, and lack of options. She refers to them as reluctant caregivers. We know that no matter the reason for becoming a caregiver, we admire these individuals all the same.

2. It's always good to take a few notes from someone who knows. This list of 9 tips for caring for the family caregiver is written by a healthcare professional and more importantly, a family caregiver. He offers some valuable advice for accomplishing caregiving tasks and maintaining physical, mental, and emotional health as caregiver.

3.There is a movement to recognize the burden family caregivers carry every day. Our healthcare system is relying on these individuals to provide daily care, often without training, unexpectedly, and for years. That's why TEDMED has named The Caregiver Crisis as one of our Great Challenges. Read Examined Lives: A young caregiver helps three generations to see a personal picture of a family caregiver's struggle.

4. There will come a time in every person's life when you realize you're not immortal and the people you love are not immortal. For most people, that time comes when someone becomes seriously ill. And then many individuals depend on their doctors to guide them in making healthcare-related decisions, treatment decisions, medication decisions. We know how much an individual relies on the person with the expertise, and for that reason, we agree with this article. Doctors should discuss end-of-life planning with their patients. Planning ahead and open discussion can ease the difficult decisions that arise at end of life.

5. We usually provide you with a lot of articles to read about caregiving and end of life, but we stumbled across this series of videos from the American Health Lawyers Association about the importance of advance health care planning. It's a bit dated looking, but the information is still relevant. It's an interesting perspective because the series follows a fictional family discussing health care planning issues. The videos could help guide you in your own planning, or if you're a healthcare professional, might help you figure out how to discuss it with your patients.

Wednesday, February 20, 2013

The Wednesday Image Plays Golf!

Practice for the 2013 Accenture-MatchPlay Tournament at 
The Ritz-Carlton, Dove Mountain
Image taken by Marilyn Hansen

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

Monday, February 18, 2013

Three Misconceptions About Hospice Care

Myth: You need a doctor's referral before you can talk to the hospice.

Anybody can call a hospice agency and ask for information about care services. If you, or someone you love, is terminally ill and would like to know your options, a hospice provider would be happy to answer your questions about comfort care. If you believe you, or a loved one, is eligible for hospice services, contact a local hospice provider and ask to schedule an evaluation.

We encourage individuals to empower themselves in their health care knowledge and decisions. We are happy to provide information as well as take self-referrals or referrals from individuals' family members and friends. If we believe an individual meets the criteria for hospice care, our staff members are happy to contact his/her physician and take care of the necessary paperwork.

Myth: You are required to use the hospice that your healthcare provider referred to you.

We encourage individuals to exercise their power of choice. If your healthcare provider only gave you the name of one hospice organization, feel free to ask your provider for the names of other area hospice agencies or research other hospices in your area. You should double-check and be sure your hospice of choice works with your insurance. When you're letting individuals care for you, or your loved one, in your home, during this sensitive time of life, you should feel trust in and comfort with your hospice care team.

Myth: Hospice care is only for individuals dying of cancer.

Because hospices used to provide care to terminal cancer patients most often, there's a lingering belief that hospice services are only for cancer patients. However, hospice care is not based on a specific disease; care is provided to individuals who are expected to live six months or less. Hospice organizations can provide support to patients suffering from cancer as well as diseases such as dementia, heart disease, kidney failure, and more.

If you, or your loved one, reside in the Tucson and Pima County areas, and would like more information about hospice services, contact Casa de la Luz Hospice at 520-544-9890.

Friday, February 15, 2013

Friday Five: Links We Liked This Week

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

1. Do you like to give people cards to express your congratulations, sympathies, and other well wishes? It's not uncommon to give and receive cards for all the big moments in life, and even cards just because. But, there are no cards for when an individual you know goes on hospice. Here's a Forbes article about the lack of hospice-relevant cards by Hallmark, and information on how you can help encourage the creation of hospice cards.

2. What are your suggestions for dividing the "workload" among family members? Here's an article about the "Sandwich Generation" that offers some suggestions on how family members can discuss care and financial support,and hopefully avoiding some ugly confrontations.

3. If you've discovered Pinterest, we'd love to recommend checking out the National Hospice & Palliative Care Organization's Pinterest boards. We love their inspirational images and the variety of photos they've gathered of people showing their support for hospice.

4. The American Heart Association maintains a great resource section on their website for caregivers. Check out these top 10 tips to refresh yourself. We're especially fond of the tips 6 through 10. The first few are ones you hear pretty frequently, and the second half of the list are ones you should probably hear more often.

5. We discovered a new blog on the Boston Globe website called Mortal Matters. Judging by the first few entries, we're pleased that there's another person arguing for a broader discussion on what end-of-life care means in this country and for encouraging individuals to be open about what kind of care they would want at the end of life.

Wednesday, February 13, 2013

The Wednesday Image: Holding Hands

Sculpture at The University of Arizona
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, February 11, 2013

Organizing Your Personal Affairs, Just in Case

Maybe you're a little less organized than you should be. Or maybe you are organized, but it's a system that works for you and that you've memorized. What if something happened to you, and your parent/spouse/child/sibling had to go through your paperwork, pay bills for you, talk to your bank? Would they be able to? If the answer is no, or not sure, use this helpful checklist to guide you in organizing your important information and putting your affairs in order.

Place these important documents in labeled folders in safe place, but still easily accessible to your loved ones. Make sure you tell him/her where these documents are kept. You may choose to also provide copies of some of this information to your loved one, such as a spouse or child. If there's a lot of information, including some that may require explanation, consider scheduling an annual meeting with the person you've designated to manage your assets. Take the meeting time to review information, such as ownership of property, list of assets, debt and loan statuses, etc.
  1. Last will and testament, and contact number for your attorney and executor
  2. Safety deposit box information, including contents, bank name and address, and a list of individuals allowed access
  3. Instructions for your loved ones, including contact information for any advisers and relatives, friends and other loved ones
  4. Funeral or memorial service information and instructions, including pre-payment information, name and location of selected mortuary/funeral home
  5. Birth certificates, marriage certificates, divorce decree, and/or separation agreement
  6. Social Security card or number
  7. Military discharge papers
  8. Federal and state income tax returns for the last several years
  9. Insurance policies, including company name, policy number, and beneficiaries
  10. Titles, deeds, and leases to all property
  11. List of assets and locations
  12. List of debts, including outstanding loans, amount owed, etc.
  13. Securities and investments, including records of trusts, stocks, bonds with broker names/numbers
  14. Credit card account numbers, cards, and statements
  15. Loans payable and receivable, and any other contracts and agreements to which you are a party, including names, addresses, and conditions of these
  16. Other business records
  17. Appraisals, receipts, or estimates of valuables
  18. Usernames and passwords of online accounts, including online banking, e-mails, social networking sites, etc.

Friday, February 8, 2013

Friday Five: Caregiving and Hospice Care

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

1. If you're interested in statistics and numbers, these Pew Research Center studies are always interesting. We found this new release on "the sandwich generation" particularly appropriate for the topics we're always discussing on our blog. We're well aware of the many individuals out there who are struggling to juggle aging parents and children.

2. Speaking of caregivers, we found quick read article with some survival tips for individuals caring for a loved one with Alzheimers. They're three common tips, but that doesn't make them any less important.

3. If you follow hospice and healthcare news, then you already caught this news about a Brown University study of end of life care. The researchers learned that despite an increase in the use of hospice care, there's also still huge numbers of people spending time in the ICU in the last months of life. It amazes us still that despite what we know about how most individuals would choose to die at home, so many are still being sent to the ER and intensive care units.

4. For individuals looking for some understanding about hospice services, we liked this article, "Hospice care is geared toward maintaining quality of life long before death is near." We can't agree more that hospice provides support, not only to patients, but also to family members and other loved ones. Oftentimes, hospice comes into the picture after years of caregiving and treatments, and many families find it a relief to have people to turn to with their questions, fears, and needs.

5. If you'd like to explore more about the services a hospice provides, visit the National Hospice & Palliative Care Organization for a description of services, the hospice team, and answers to frequently asked questions. NHPCO can also assist you in finding a hospice in your area.

Wednesday, February 6, 2013

The Wednesday Image: Is That A Wildcat?

University of Arizona Cactus Garden in front of Henry Koffler Building
According to university stories, the Koffler building is supposed to resemble a wildcat.
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, February 4, 2013

Hospice Enhances Quality of Life for Patient & Caregiver

As a hospice social worker, I find it so gratifying to provides resources and supports to enhance a patient's quality of life and to strength his/her caregiver(s).

I recently worked with a patient who was cared for at home by his wife. The couple had a vacation home in northern Arizona, and was able to travel there from time to time while our patient was under hospice care. Since he needed his hospice services to remain in place while he was away from his Tucson home, we arranged hospice oversight for him in northern Arizona.

While under hospice oversight, our patients remain under the care of Casa de la Luz, and we partner with another hospice in the area where the patient is visiting. The other hospice will respond to a patient's needs for the duration of the vacation. For example, while my patient and his wife were in northern Arizona, if he needed hospice attention, his wife would call Casa as usual. Then, a Casa staff member contacted the oversight hospice for follow up with the patient. This arrangement works well for patients who are able to travel. Patients enjoy an enhanced quality of life while still receiving the benefits of hospice care.

Hospice oversight also helped our caregiver. The wife frequently told me that when she was able to get away from Tucson to their vacation home, she could "feel the stress melt away." Those breaks from the norm allowed our caregiver to rest and relax and focus on time with her husband during his last days.

This couple was also able to utilize the hospice respite benefit. Hospice patients are periodically entitled to five days of respite care in an approved facility so the caregiver can have a break to rest or travel or attend to other important matters.

The respite benefit allowed the patient's wife to visit and spend time with grandchildren while her husband was cared for in a skilled nursing facility. By arranging respite care for our patient and his wife, she was able to rest from caregiving and enjoy special celebrations with her grandchildren.

She said, "The supports of hospice respite and oversight allowed me to have the energy to care for my husband all the way through to the end of his life. The breaks were available just when I needed them. I couldn't have done this without hospice support!"

By Lisa Daniels, Social Worker

Friday, February 1, 2013

Friday Five: Caregiving for the End of Life

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

1. One of our favorites, the New Old Age blog, had this great story about how a group of women rallied around one of their own. For the Love of Sunny is a sweet story about how a group of friends caught the signs of their friend Sunny's decline from Alzheimer's, and how after Sunny's diagnosis, they remained, supporting Sunny and her husband. It's a lovely story about how friends can approach illness. It can be difficult to watch a friend change, but continued support of friends makes a difference for the seriously ill individual and for their caregivers.

2. Our second suggestion for links to read this week is a lot like the first. "A hospice visit: We will sing together again some day" is a doctor's article about visiting a dying friend. At the end of life, it's our relationships with others that matter.

3. When it comes to dying, it's going to happen to all of us. We encourage end of life planning because we know most of us will die from some kind of long-term, chronic illness. It's hard to know where to start the conversation, though, and that's why we like these questions in this LeadingAge article, "End-of-Life Planning: Starting the Conversation."

4. We admit it, we're suckers for a good checklist. These easy tools can be so helpful in identifying needs, making sure personal items and documents are in order, and just offering a good starting place. So of course we like this Where to Begin Checklist from AssistGuide Information Services. Not only is it an easy to read format and in a file format that you can save to your computer, but it also offers suggestions of how to tackle each item on the checklist.

5. Casa de la Luz Hospice is excited to have reached Level 3 in the national We Honor Veterans program. Learn more about the program and what hospices around the country are doing to better their care of veterans at end of life.

Wednesday, January 30, 2013

The Wednesday Image: Rolling Mountains

The view at Colossal Cave Park, Vail, 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, January 28, 2013

Time Management Tips to Help Family Caregivers

They're called the sandwich generation. They're family caregivers who are caught caring for two generations of family--their elderly parents and their still growing kids. They're probably also working outside the home.

When it comes to busy, today's family caregivers are the very definition, and that's why we're offering a few thoughts on time management today. We hope you'll find these tips helpful in getting through your to-do list.

1. Write it down. Use a calendar or planner and create a schedule. Write down your regular appointments and meetings to give yourself a clearer picture of your time commitments.

2. Ask for help. Do your care duties include cleaning up after your teenagers? Are you responsible for cooking the nightly meal every day? It's time to delegate some tasks. Ask others to pitch in around the house. Have a sibling spend a few hours with Mom and Dad. Look into options for hiring assistance. Contact an in-home care service provider to assist you with your elderly loved one.

3. Prioritize. Look at your to-do list and determine what's important and what's urgent. In an article on Time Management from Sue Chapman and Michael Rupured, they suggest focusing and spending more time on activities that are important. "Focusing on these important activities allows you to gain greater control over your time and possibly reduce the number of important tasks that do become urgent."

4. Organize yourself. Gain more time back by spending some time organizing your life. Do you lose time looking for items or documents? Do you just have too much clutter? Take a few minutes each day and see if there's something you're holding onto that you can toss. Make the effort to organize important documents, such as birth certificates, living will, advance directives, and insurance information.

5. Say no. Every time someone asks you to do something for them or go somewhere with them, it takes away a little bit of your time. Don't be afraid to say no. Make commitments that you're interest in, are of value to you, and can meaningfully contribute to your life right now.

Sources: Time Management: 10 strategies for better time management by Sue W. Chapman and Michael Rupured, The University of Georgia Cooperative Extension
Time Management from Family Caregiving 101
Time Management Tips from Holden Leadership Center at The University of Oregon

Information compiled by Carrie Bui

Friday, January 25, 2013

Friday Five: Helpful Resources for Caregivers

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

1. We stumbled across this great caregiving blog this week. Caregiving Cafe offers its readers, family caregivers, support information, tips, and the latest articles on caregiving issues. Click your way through the site to see if some of the topics can help you.

2. A large part of caregiving is figuring out how to navigate the healthcare community. "How to Communicate with Your Parent's Medical Team" is a recent article on care.com that provides a handful of excellent tips for managing an elderly loved one's care. We especially like the tip that you shouldn't assume doctors are sharing information and to switch doctors if necessary. The first is a reminder that you have to be vigilant about tracking health information, and the second is a reminder that an individual has the power of choice.

3. Sometimes, caregiving is a job, and sometimes, as a job, it can become very stressful. Among the many great resources on the Alzheimer's Association website is this information on Caregiver Stress. It gives you a list of stress symptoms to watch out for, as well as tips on managing stress. Part of being a great caregiver is also being able to recognize when you're overwhelmed.

4. It's always great to know when there's someone helping you fight the good fight. For family caregivers, one of those fighters is Rosalynn Carter. Read this article from Forbes to learn about how Carter is championing caregivers through the Rosalynn Carter Institute for Caregiving. When you read her three insights into caregiving, you'll be assured that she gets it; she gets what caregivers need from our country.

5. There may come a day in your caregiving journey when you're ready to bring in reinforcements, a little extra support. If you've been caring for a loved on with a life-limiting illness, that support might be hospice care. It can be difficult to let strangers in to your home and your personal lives, and that's why you want to choose the hospice that's right for you and your loved one. Let this Choosing Hospice worksheet from Caring Connections help you make your decision.

Wednesday, January 23, 2013

The Wednesday Image: Sunny Day at the Lake

Silverbell Lake at Christopher Columbus Park, Tucson, AZ
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, January 21, 2013

Tools for Family Caregivers

As a family caregiver, numerous tools are available to help make life easier, more efficient, or just to give you a little extra information and support. Here are a few tools we found. Some may work for you, and some may not. Apply what does, discard what doesn't.

Caregiver Self-Assessment
The American Medical Association offers a free, downloadable Caregiver Health Self-Assessment questionnaire in a pdf format in English and Spanish. Research shows that many family caregivers experience a decline in their own health. Take this self-assessment to determine if you might be at high risk for distress, and then consult with your physician or local resources that assist family caregivers or elderly adults.

Digital Calendars
Sometimes, caregiving duties are split among family members. If that's the case in your family, a good shareable calendar tool, like Google Calendar, can help you manage responsibilities, tasks, and appointments. Use the calendar to input your loved ones' appointments, and as a way to keep track of whose day it is to fulfill caregiving duties. Digital calendars can also send reminders, perhaps as an alert via your phone or email. There are multiple digital calendar options, so if Google doesn't work for you, we suggest finding one that does. We appreciate that it's a free option and should sync with Android smartphones.

AARP Care Provider Locator
It's OK to ask for help sometimes, especially if you are the primary family caregiver. A multitude of options exist for aging adults. The difficulty is in deciding what kind and how much assistance you might need. The AARP Care Provider Locator defines a few of the care options available, including home health, assisted living, and adult day programs. You can find what's available in your area by using the zip code search tool.

Menu Planner
We know that sometimes even the most basic tasks, like eating, can get away from a family caregiver. Sit down for a few minutes at the beginning of each week with a menu planner so that every meal isn't a burden or easy to skip. A menu planner can also make grocery planning simpler, faster, and cheaper. You might choose a digital one to keep on your smartphone or computer, or choose a calendar printout that you can hang on the fridge. Fill it with meals that are quick, easy to prepare, or make-ahead. Think slow cooker meals, sandwiches, salads, or freezer meals.

Friday, January 18, 2013

Friday Five: Caregiving Responsibilities

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

1. This short USA Today piece about a Delaware hospice volunteer made us smile. She sounds like a spunky lady, offering kindness to people during the last stage of life. We are so grateful to all of the hospice volunteers around the country who sit with dying people, listening to patients' stories and providing a comforting presence.

2. If you are in the Tucson area, and interested in volunteering for a hospice, take a look at our website to learn more about our volunteer opportunities. Casa de la Luz volunteers provide companionship to patients, office support, event support, and bereavement support. It's not too late to submit a volunteer application and join our February volunteer training group.

3. Family caregiving is often an emotionally taxing and physically draining responsibility. It is also often a financially stressful situation, and that burden is not necessarily easier if more people are in the picture. This week, TIME offers a series of tips for adult siblings who are trying to balance finances and caregiving of elderly parents.

4. When caregiving responsibilities end due to a loved one's death, there can be a sort of double whammy of grief. Family caregivers grieve not only for the death of their loved one, but can also feel a sense of loss because they lose a sense of purpose. The Hospice Foundation of America has a helpful article, After Caregiving Ends, with some insights on what to expect and how to address these issues of loss and grief.

5. It can be helpful to people to take the time to write out their thoughts, and many family caregivers have taken to the Internet to blog about their experiences and frustrations. Here's another family caregiver blog, from Angie, whose husband was diagnosed with Alzheimers in 2008.

Wednesday, January 16, 2013

The Wednesday Image: Saguaros Dot the Landscape

View from Colossal Cave, Vail, 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, January 14, 2013

Hearing & Sound at End of Life

Hearing is the first sense we develop in life, and it is the last sense to go. We hear when we are sleeping, and even when we are otherwise non-responsive. Some sounds can be soothing, while others can be disruptive.

A patient does not need to be awake or responsive for music to be helpful to breathing and relaxation. A patient who has difficulty hearing voices may still be able to hear an instrument or feel the vibration of the music.

If you choose to play music, choose something that you feel might be supportive of the patient or whatever the patient might be requesting. When playing music for a patient, spend a few minutes watching him/her. Look for signs of increased relaxation or potential tension in the face, hands, extremities, or in breathing.

Some sounds that may once have been enjoyable to a patient can be startling or agitating near the end of life. We recommend cell phones be kept on the vibrate setting when visiting with a loved one, and phone calls should be made or received outside of the patient's presence.

Television and radio might have been used daily to provide news, sports, entertainment, and distraction. This may not be needed at end of life. Offer your loved one the choice to have the TV on. It is empowering to let decisions be made by the patient if at all possible. While the TV is on, observe your loved one occasionally. Is he/she engaged and enjoying the programs? When leaving the room, ask  your loved one if he/she would like the TV on/off.

The familiar sound of your voice can be of great comfort to your loved one, even if a patient is non-responsive. When entering a loved one's room, announce your presence gently with voice and touch, so as not to startle him or her unnecessarily.

Speak words of love. Tell stories. Remember the times spent together. Come to closure. Speak even of the future. Let the individual know that he/she will be remembered. Understand there can sometimes be too much of a good thing. Observe your loved one to know when he/she may need you to be with them without speaking.

We often assume silence is bad and sound is good. We think in silence there is nothing, while sound provides at least something. Yet silence or quiet may be exactly what a patient needs to process his or her journey, and what we as loved ones may benefit from as well. Each patient, and each patient's loved one, deserves the opportunity to process what is happening inside. Sometimes, silence provides that opportunity.

Information compiled from "The Breath of Sound," a Casa de la Luz publication. "The Breath of Sound" was written by Carolyn Ancell, certified music practitioner.

Friday, January 11, 2013

Friday Five: It's Tough Being A Family Caregiver

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

1. Glad to see more and more resources popping up to help individuals and families have important discussion about planning for the end of life and medical crisis situations. And, we appreciate national media coverage like this USA Today article, "Projects get people talking about end-of-life care," because it gives us and these projects the opportunity to reach and help more people.  

2. Our newsletter for family caregivers is published on the second Thursday of every month, covering topics such as depression in seniors, family and medical leave, and healthcare options. Visit our Living with Serious Illness website to sign up for the newsletter, read articles in our resource library, and search our community programs directory.

3. Chris Gardner wants family caregivers to know they're not alone. Read his post on AARP about how he was caregiver to his spouse for years while she suffered and lost function due to an inoperable brain tumor. Read "Caregivers, You're Not Alone" to know there are millions of other individuals, like yourself and like Chris, providing loving care to family members and friends.

4. We've often shared resources from the National Family Caregivers Association, and they have a great new site, Caregiver Action Network. Explore the new site to find resources, learn how you can volunteer, and make a donation, which will continue to help other family caregivers find resources, information, and education.

5. The Consumer Electronics Show is technology's annual opportunity to show off its newest innovations, gadgets, toys, etc. While most people are probably directing most of the attention to car, computer, and television technology, the show offers a lot more than just innovation in those categories. AARP's caregiving expert Amy Goyer was at the show and found two family-friendly apps that she can use in her personal life, for herself and to fulfill her role as a caregiver for her aging parents.

Wednesday, January 9, 2013

The Wednesday Image: Studying Life

Deer, Arizona-Sonora Desert Museum
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, January 7, 2013

Honoring Veterans at End of Life

For all of the social workers in the field as well as in the Inpatient Unit, one of our most special times is when we have the opportunity to offer recognition to our veterans as part of our We Honor Veterans program. All of our patients who are veterans are offered this recognition ceremony after they come onto hospice services. Casa de la Luz has been officially offering recognition ceremonies through this national program for a year and a half now, and as one of the IPU social workers, I have had the opportunity to witness this event many times.

During the short ceremony, the veteran is presented with a plaque and a token of our appreciation for his or service. Often words such as the following are read (as drafted by one of our social workers, Judith Kent):

All soldiers go into service with the hope of defending what they hold most dear: freedom, liberty, and the chance to live life joyfully among loved ones, in the security of a peaceful homeland.

We remember the human cost to each soldier, regardless of where and how he or she served. With this, we bear witness to the patriotism, devotion to duty, and courage of all veterans.

Please accept this token of our respect as an expression of American gratitude to you as one who has served to defend this dream.

We have found that these presentations are often very moving and may bring the patient and/or loved ones to tears. (Us too, sometimes!)

Recently, we had a patient who was unresponsive. When asked about an honor ceremony, the family refused it because they did not think the patient would comprehend or be able to appreciate the service. When I suggested the service could be for the family as well as the patient, they gave it some more thought and then accepted our offer. They called other family members and encouraged them to attend the brief service, scheduled for later that afternoon.

At the scheduled time, the nurse, volunteer, chaplain, and I went into the patient's room where a large group of the patient's family members had gathered. Words of gratitude were expressed to the patient, even though he was unable to respond. A plaque stating Casa de la Luz Hospice and Foundation is proud to honor ***** for his service in the United States Air Force and a hanging with the Air Force insignia were presented to the patient and family. The family members beamed with pride for their loved one. Afterwards, family members told the staff they were so glad they decided to accept the service because the patient had loved his time in the military, and the family knew that the patient was grateful for his presentation.

*****Name removed to protect privacy of patient and family

By Kimberly Bingham, Social Worker

Friday, January 4, 2013

Friday Five Finds Helpful Internet Resources

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

1.We found this article, "Study finds spiritual care still rare at end of life," interesting since the spiritual counselor is considered an integral part of the hospice care team. As end of life experts, we understand that the end of life and dying is not just a physical, medical event. It can also be one of great spirituality, an opportunity for individuals to reconnect with faith or religion or to just weigh what is most important in their lives. Once we have opened the door to a discussion of death and dying, perhaps our next challenge is having a conversation about how dying affects individuals physically, mentally, emotionally, and spiritually.

2. The San Jose Mercury News ran an excellent yearlong series about the cost of dying, and the final piece, "Cost of dying: Discovering a better way for final days" is an excellent summary of the year's articles and how we can change the end of life in the United States. I am reminded of Dr. Byock's message that dying doesn't have to be this hard.

3. For elderly residents in Pima County, stay up to date on events from the Pima Council on Aging by checking their online calendar. PCOA offers excellent workshops and events designed to meet the needs of aging adults and their caregivers.

4. Stay on top of Medicare news and understand the Medicare system a little better with the help of the official Medicare blog. The Medicare Blog offers information about coverage, open enrollment, and strengthening and improving Medicare.

5. Have you explored the AARP Caregiving Resource Center yet? The website features helpful articles, tip sheets, forums, a blog, and the occasional webinar. It's a wealth of resources for caregiving individuals.

Wednesday, January 2, 2013

The Wednesday Image: Overlooking the Horizon

Arizona-Sonora Desert Museum, 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.