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

Friday, June 29, 2012

Friday Five: Suggestions for Elder Resources

1. We enjoyed the entry posted this week in the San Diego Caregiver's Blog, "A Caregiver's Story: Art Inspired By Brother's Hospice Journey." Eva Valadez's story reminds us that there are many ways to being with people, and ways to offer them comfort that aren't just physical. We're sure that Valadez's art gave many individuals a little bit of comfort for their souls.

2. We always encourage you to use the resources available specifically for family caregivers or patients facing the end of life. A great resource for people caring for a loved one is Lotsa Helping Hands, a site that helps you set up a free community website. This website is a great tool to help coordinate care with multiple caregivers, keep long-distance family and friends in the loop, and offer support to one another.

3. Have you recently taken on a caregiving role for an elderly or seriously ill loved one? Family Caregiving 101 is a great place to get started with suggestions on how to manage, assessing your abilities, and understanding the stages of caregiving.

4. The National Hospice and Palliative Care Organization kicked off a national summer tour to educate individuals on the benefits of hospice. They've partnered with music festivals across the country to increase information and public awareness. The HospiceFest press release lists the music festival partners with cities and dates.

5. The website for the National Institutes of Health Senior Health has a great collection of videos covering a variety of senior health topics. One great series for family caregivers and patients to watch is the Talking with your Doctor series. It's easy to walk into a doctor's office, be flooded with information, and then leave without having any actual understanding. Use these videos as a way to prepare yourself and not end up overwhelmed with information.

Wednesday, June 27, 2012

The Wednesday Image: The View from the Top

A bird admires the view from the top of a cactus.
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, June 25, 2012

For Family Caregivers: What to Expect When Someone Is Dying

Hospice care serves to help patients and their loved ones understand the dying process. Members of the hospice interdisciplinary team serve as guides for an individual’s end of life journey. Here are some things you, as a family caregiver, can expect from and offer to your loved one during his/her dying process. Your hospice team can offer you further insights and suggestions.

Final Months to Weeks
We encourage caregivers to practice acceptance of the patient’s withdrawal, including a declining appetite and thirst. 

Know that a loving presence is the greatest gift you can offer to your loved one. 

Please remember to take care of yourself. Do not hesitate to accept respite from others, such as caregivers, volunteers, and friends. 

Honor your loved one’s spiritual experiences and beliefs. Discuss any supports or practices that the patient may find comforting.

From Weeks to Days
The dying process can be a very spiritual and otherworldly event for the dying person. She/he may see, hear, and speak to those who have died before, re-live other times, see things we cannot, and pick at the air or bedclothes. They may also speak symbolically, using wording about needing to pack, taking a trip, or boarding a train. It is more helpful for you to meet them at this spiritual level and use their language to gain understanding, to comfort, and to affirm their needs.

We believe hearing is the last sense to leave us. Maintain a calm environment and presence for your loved one, and speak in a quiet and natural way to him/her. Explain when you are going to do something, and reassure your loved one if he/she is frightened.

From Days to Hours
Now is the time for you to focus your attention on caring for your loved one’s spirit. We encourage you to continue providing care for the body, but to be aware of your loved one’s inner needs. 

Say what you need to say to your loved one. Be open to tears and your feelings. Choose what is right for you and your loved one. You might consider saying any of the following. I love you. I will miss you. It’s okay for you to go; we will be alright. Please forgive me. I forgive you. Thank you. 

Know that death will come in its own time. Some individuals may wait to see or speak to a specific person. Other people choose a moment to die when they are alone. Still other individuals will die surrounded by loving faces.

Moment of Death
Take your time to say goodbye. 

Call the hospice to let them know the patient has died. A nurse will come out to pronounce, and will assist with death arrangements. 

If you have questions about how hospice can help you during the end-of-life process, contact your local hospice provider. To find a provider, visit the National Hospice & Palliative Care Organizationwebsite.

Information adapted from Casa de la Luz Hospice Safe Passages booklet

Carrie Bui, Communications Specialist

Thursday, June 21, 2012

Friday Five: Notes of Interest for Elderly Individuals

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

1. We know we usually post links to a lot of serious articles, even the occasional tearjerkers, so it's nice to be able to post something a little more lighthearted. "Aging Gracefully: What Percentage of Americans Find Getting Old Is Better Than They Expected" is a summary of a survey asking individuals aged 18-65+ about aging. I thought the slide show was particularly fun. How do you feel? Is aging better than you expected?

2. When the time comes that an aging adult can no longer live alone, it's not easy on anyone. Most individuals struggle against the need to give up some of their independence, and family members grapple with where Mom or Dad will live and how they'll be cared for and how they'll pay for the new residence. Leaving Home was a great article on the AARP site and from the magazine this week about one family's story of moving Mom. The Cawthons shared their difficulties, and all of the solutions they tried in order to make sure Doris, the mom, was happy. The article helps to demonstrate how there can be multiple solutions to a problem, and that sometimes those solutions also need to evolve over time.

3. How did you celebrate Father's Day this year? We appreciated this op-ed by Sue Horton in the Los Angeles Times. "A Father's Day gift: Having the end-of-life talk" is an honest depiction of the writer's experience with a father who was failing physically and mentally. Her ability to be honest with her father about needing more than his trust in her, and his ability to share with her, in clear terms, his end-of-life wishes, were their gifts to each other. That should serve as an example to all of us that honesty and clarity will serve us well in the end. We do admit to being alarmed at the ER physician's not initially following the daughter's instructions, but we hope that kind of attitude will change, too.

4. We're always looking at veteran's stories, and we appreciated this one from our own community about a veteran with PTSD. We like Tucson Weekly's The Story of Mac & Jill for the attention it brings to the need to help veterans with post-traumatic stress disorder, and offers one possible solution--rescued service dogs. We hope that Jill's conflict between her service dog and her workplace is resolved soon, too.

5. If you're caring for an aging loved one, and you can feel yourself drowning in the paperwork and the jargon and the cross-care coordination, resources are available to assist you. It's very common now for individuals to hire geriatric care managers to help them navigate the waters of elder care. Find a care manager in your area by searching the National Association of Geriatric Care Manager's member database.

Wednesday, June 20, 2012

The Wednesday Image: Spring Flowers

Image taken by Carol Heil

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, June 18, 2012

Tips for Living in the Summer Heat

Summer weather has arrived in Tucson, and it looks like it’s here to stay. The heat can be especially hard on people aged 65 and older and those with chronic illnesses. Here are our tips for managing the hot summer weather.

Stay hydrated. It’s especially important to drink water, even more than you normally would, is the CDC’s recommendation.

Avoid using the stove or oven. These appliances will only make your home warmer. Try meal options such as salads, chilled soups, and sandwiches.

Keep in touch. If you live alone, ask a neighbor, family member, or friend to check on you. Do the same for them or another person. 

Remain indoors. Once the temperatures reach the 90s, it’s best to try and remain in an air conditioned setting. The CDC says even a few hours spent inside a shopping mall or public library can help you stay cooler. The local health department can also direct you to any heat relief shelters.

Take cool baths/showers. This will help cool your body down, and according to the CDC, can be more effective  than electric fans in times of very high heat.

Apply sunscreen. Wear a lip balm with SPF 15 and choose a sunscreen that is at least SPF 15 or higher. 

Know the symptoms of heat-related illnesses. Symptoms of heat exhaustion include heavy sweating, feeling weak and/or confused, dizziness, nausea, headache, fast heartbeat, and dark-colored urine.
Heat stroke is defined when the internal body temperature reaches 104 degrees Fahrenheit. 

Symptoms of heat stroke include vomiting, high fever, severe headache, lack of sweating, muscle weakness or cramps, nausea, and more. Heat stroke is much more dangerous than heat exhaustion, and can cause damage to the organs and the brain.

The weather becomes more dangerous as temperatures rise, and we encourage you to stay safe this summer.

Information compiled from the Centers for Disease Control and FamilyDoctor.org

Carrie Bui, Communications Specialist

Friday, June 15, 2012

Friday Five Talks About Care at the End of Life

The Friday Five is our weekly roundup of links to smart articles and helpful resources for family caregivers and individuals dealing with serious illness.

1.We loved this article from the Sun-Sentinel, "The Unsung - Hospice nurse stays upbeat in face of heartbreak" because it was such a great portrayal of an often misunderstood community. This nurse helps point out that hospice care is not all sadness, and we hope it gives individuals an understanding of how hospice can support terminally ill patients and their families at the end of life. We might be biased, but we think the education and support that a hospice interdisciplinary team can offer is invaluable.

2. This Sunday is Father's Day, and we choked up a little while reading "A Bittersweet Father's Day" in the Chicago Sun-Times this week. It's one daughter's story of caring for her father near the end of his life, and it's her story of her most memorable and worst Father's Day. Holidays can be especially difficult as you remember times past, when a loved one was healthy. But you're not alone, and it's important to take joy in a memory's small details, such as the day writer Marlen Garcia describes in her article.

3. We'll be curious to hear the results of the trial described in this article from American Medical News, "Checklist approach to be tested in end-of-life care planning." We always encourage more discussion for end of life planning, and we know that many individuals have not laid out their end of life wishes. If physicians can begin this conversation with patients sooner, we believe it will relieve some of the stress and guilt that family members experience when trying to make decisions for a loved one who is no longer able to express their wishes. It also helps ensure that a patient's wishes are fulfilled.

4. We found a nice boomer woman lifestyle site this week called ThirdAge.com. It's one of those all-around sites with articles geared towards baby boomer women. Because we know that most of our family caregiver readers are probably women, we thought you might appreciate the site, especially the Caregiving section under Aging Well.

5.  Are you on Facebook? This social networking site is a great way to find and share information with other caregivers like yourself. The website Caring.com keeps an active Facebook page with information and a steady stream of conversation among caregivers.

Wednesday, June 13, 2012

The Wednesday Image: Natural Beauty

Catalina State Park, Arizona
Image taken by Shanna Hoskinson

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, June 11, 2012

Turning the Ordinary into the Extraordinary

We know that if you have stumbled onto our blog, you are probably one of millions of individuals in the U.S. who is struggling with a serious illness or caring for a loved one with a serious illness. Neither of those tasks are easy, and we can get caught up in the difficulties, the mundane, the appointments, the medication reminders. 

This is why we believe in educating individuals about general wellness—physical and emotional wellness. Today, we consider the ways in which we can turn the ordinary everyday into an extraordinary day.

Part of finding the extraordinary is awakening and remembering our opportunities to enjoy living and life. We can become so used to the ordinary that after awhile, we don’t see it anymore. Sometimes, extraordinary moments are ordinary actions with a new perspective. We need to be open to the life experiences that give us pleasure. 
Think about how you feel when you prepare a meal at home, when you water the plants in your garden, when you sit with a beloved dog or cat and pet them. These are actions that are small events, ones that happen frequently. Let’s apply a new lens to them. These are also actions that are sustaining and transforming life. You prepare a meal to sustain the life and energy in you or ones you love; watering your garden encourages the growth of your plants; petting your animals sustains their emotional energy as well as your emotional well-being.

As we age, we are challenged to redefine pleasure. Think back. Are your pleasures at age 20 the same as those today? Some of them are probably different. Our challenge as human beings is to find the things that are pleasurable to us. In order to do that, we need to know the qualities within ourselves that help us enjoy and cope in life. These qualities might include a sense of humor, an appreciation for natural beauty, or our love for family. 

Take the time to nurture these qualities. It can be difficult to find the time, especially with the many responsibilities on our shoulders. Train your attention to focus on one thing at a time. Look to be fully present in the moment, and know what helps you to be present. Set priorities. Make a list. Tackle one thing at a time. We have a choice in how we interpret life and its events. We choose what we focus our attention on. Attention is a precious commodity. 

Keep the creative intelligence alive within yourself. Focus on learning. Read. Interact with others. Listen to books on tape. Paint. Draw. Write. Commit to an activity that engages your mind and gives you joy. These activities might also be your stress reducers. It’s important to be aware of stress-relieving methods that work for you.

Lastly, take the time to let others show you the extraordinary in life. It used to be that families would sit down together each evening around the dining table. Today, we’re often too busy and running around too much. Return to this habit. The time spent around the table offers the opportunity to share, connect, and learn. Share your stories with your families and friends; listen to their stories.
In order to capture the extraordinary, we have to train our lens on actions and relationships that will bring delight into our lives. And, we also have to believe there’s wonder in the ordinary. 

Turn your ordinary into extraordinary today.

Information provided by Marianne Schloss, RN, M.Div.

Friday, June 8, 2012

Friday Five: Reading for Caregivers

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

1. When you tell people you work for a hospice, they often ask you if it's sad, or make a comment about how difficult it must be. People assume that death is only sad, without realizing that one can be both sad and at peace with this inevitability. This profile of a Baltimore hospice nurse is a great way to understand hospice work, and how "It Doesn't Have to be Sad."

2. This article shared an experience of the healthcare arena and the hospital space that is unfortunately all too common. "Communication Vital to End-of-Life Care" is a piece we hope gets some actual attention from hospitalists and other physicians. Families seek the guidance and support of healthcare professionals. And, in order to help patients and families make healthcare decisions, healthcare professionals need to provide all of the options in a clear manner.

3. The New York Times Magazine has a lengthy feature piece this week about Alzheimer's disease, "How Do You Live Knowing You Might Have The Alzheimer's Gene?" For individuals caring for a patient or family member with Alzheimer's disease, it's heartbreaking to watch a once vibrant and intelligent individual struggle to remember the name and face of a spouse, child, or other loved one. However, research on the disease continues, and we can only hope that scientists will uncover more information about how Alzheimer's changes the make-up of our brains.

4. We hope family caregivers find our sponsored site, Living with Serious Illness, useful for information about how to manage emotional issues, physical care issues, financial issues, and more. The site also has a community resource directory to connect caregivers with support services in the Tucson, Marana, and Oro Valley communities. Subscribe to the site's monthly e-newsletter for articles related to caregiving, aging, and dealing with serious illness.

5. It's another day of triple-digit heat in Tucson, and it's only getting hotter from here on out. We encourage you to take a minute to read these tips for extreme heat from the CDC for people aged 65 and older.

Wednesday, June 6, 2012

The Wednesday Image: Night Blooms

Night blooming cereus at Kanmar Place, Tucson, Ariz.
Image taken by Liz Curry

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, June 4, 2012

Three Things to Know about Hospice Care

When it comes to hospice care, plenty of myths still exist about what services are provided and how patients are cared for by the hospice. So, what is hospice? Here are three things you should know about hospice care.

You do have some choice in hospice providers.
Would you like to know what you’re getting when it comes to the care of your loved one, or even perhaps, yourself? Before we make a big, and sometimes small, purchase—cars, houses, televisions, cell phones—we research. We read reviews online; we check out the company’s website; we ask others for their opinions. You can do the same thing with hospice providers. Medicare, Medicaid, and most major insurance carriers cover hospice services. However, insurance carriers might not contract with all hospices. Learn which providers are covered by your insurance, then research and compare providers so you can make an informed decision. 

You don’t have to go anywhere to be cared for by a hospice.
Hospice isn’t a place you go. Hospice is a philosophy of care, and part of that philosophy is to care for people in the place they call home. Your hospice care team will visit you in your place of residence, and provide care to you there. That includes visits from your nurse, visits from a home health aide, and if you choose, social worker, chaplain, and volunteer visits.

Sometimes, hospice patients will require more care than can be provided in the home. A symptom can become unmanageable by the family caregiver, and the hospice will recommend moving the patient to a hospice inpatient unit. The patient will only remain in the inpatient unit until the symptom is stabilized.

Hospice provides 24-hour support, but not 24-hour supervision.
Hospice care does not provide round-the-clock care in the home. The hospice empowers you with the education you need to care for your loved one. What hospice care does offer is 24-hour support. Hospice staff is available 24 hours a day, 7 days a week in the event of questions or if a crisis situation arises. Should you need assistance, you should be able to call your hospice, and a staff member will answer your question over the phone, or if necessary, will visit your loved one.

For more frequently asked questions, visit the Hospice Services page of our website. If you have a loved one in need of hospice care in the Tucson area, call us at 520-544-9890.

By Carrie Bui, Communications Specialist

Friday, June 1, 2012

Friday Five Reads About Different Ways to Care

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

1. This article was no surprise to us. The New Old Age blog included a post by Susan Seliger last week about Managing Care Online, and how caregivers are utilizing online tools to help coordinate care and to look for health information. As technology moves ahead, it will take all facets of our life with it, including family caregiving responsibilities. We think it's a great way to share news with far-away family members, to offer support and comfort to one another, and to manage a care schedule.

2. It's uncomfortable attaching a price tag to the care of another person, but there is a cost for care. Family members will see some of that cost, insurance will see more, and healthcare providers will see some of it too. But let's look at it another way. Is all this cost worth the end result? Does it ultimately benefit the patient or the provider? Is all of that costly care the kind of care the patient wanted? Amanda Bennett considers these questions in the piece, "Why Did Her Husband's End-of-Life Care Cost So Much?," an adaptation from her book, The Cost of Hope: A Memoir.

3. There are no rules as to how one is supposed to grieve and remember the dead. And as we mentioned just a few sentences ago, technology is pushing itself into all aspects of our lives. According to an article in USA Today this week, "Mourning becomes electric: Tech changes the way we grieve." The article looks at new techy ways to grieve, including memorial Facebook pages, live-streaming memorial services, and permanent online funeral home guestbooks.

4. Each day, thousands of family caregivers around the country provide care to a seriously ill loved one. These family caregivers often discover that caregiving responsibilities can quickly take over their lives, and many decide to turn it into full-time work. However, it's work that can come at a cost. This article, "Think before you quit your job to care for Mom," cites that caregivers, 50 and up, lose an average of $303,880 when they leave work early to care for an elderly parent. This is a good read for those who are trying to plan ahead for elder care costs.

5. We recommend long-distance caregivers take the time to watch this videocast from the National Institutes of Health, "Caregiving from Afar." When you're caring for a loved one who lives in a different city or state from you, it can be more difficult to understand the individual's needs. Many also struggle with the guilt of not being nearby. Watch this videocast to understand more about long-distance caregiving.