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

Wednesday, 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.