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, May 30, 2012

The Wednesday Image: Waiting Deer

Image taken by Bob Ondercin

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

Monday, May 28, 2012

Why I Have a Living Will

When you’re in your 20s, most often the things that concern you are whether or not you’re going to go to graduate school, what do you want to do for a career, who you’re going to marry, and if or when to have kids.  In your 20s you have your whole life ahead of you, and you don’t often think of what you will do if you get sick – very sick – because you’re still “invincible.” 

When I was 25 a friend was diagnosed with cancer.  After being in remission for over a year the doctors discovered the tumor that had been on her spine had now come back and spread to her lungs.  While in remission Amy* and her fiancĂ© Justin* decided not to wait any longer and got married. Now she was told she might not make it to her one-year wedding anniversary.  The chemo and radiation treatments would likely leave her sterile – if she survived – so she was told she would never have children.  Amy had to leave her position at work and in order to be at her side, Justin left his job also, and they moved in with her parents.  In a matter of months, her whole life changed. 

Amy didn’t want to give up on her dreams – didn’t want to give up on the chance of having a one-year anniversary – so they tried an aggressive treatment approach which left her tired, bloated and with her hair falling out.  Her doctors tried everything in their power to cure her cancer. With their help, Amy and Justin celebrated their first anniversary.  A few months later, however, they made the decision not to continue treatment. The cancer was too far spread in her body and the doctors could not control her pain.  For the last two days of her life they elected for hospice care where she passed away without pain and with her family by her side.

At 25 years old someone who was a few years younger than me was sicker than I ever thought I could be at that age.  I had stood by her side and watched her fight, and when she was finished fighting I had to say goodbye.  Lucky for Amy there was never a point in the process where she wasn’t able to speak for herself and relay her plans. (She and Justin openly talked about what she wanted and did not want at her funeral service.) But, what if I wasn’t that lucky?  What if I didn’t have the ability to communicate?  I told my parents the briefest of wishes. (I wanted to donate my organs – if possible, and I wanted to be cremated and not placed in a cemetery.) 

A few years later I found out about the Five Wishes – a legal document that, once notarized in the state of Arizona, acts as a living will and will carry out the wishes of a dying patient when they are unable to speak for themselves.  So before making wedding plans or career plans, I made arrangements for how I was to be taken care of if I ever needed it.

You can request a copy of the Five Wishes or fill out a copy online by visiting the Advance Directives portion of the Casa de la Luz Foundation website. This living will form is provided by the foundation free of charge.

*Names have been changed to protect privacy

By Brianne Pekar, Administrative Support

Friday, May 25, 2012

Friday Five Discusses Aging Issues

The Friday Five is our weekly roundup of links to smart articles and helpful resources covering topics such as aging, elder care, family caregiving, hospice, and grief issues.

1. We liked the feel-good feeling that this New Old Age blog entry left us. "Therapy of a Different Sort" is a look at how a trained social worker/psychoanalyst has created a positive support group in her home for women discussing aging topics. The group is called "Vibrant Seniors," and the gatherings sound like a lovely way for these seniors to add some companionship, to have a space to ask questions, and to share their feelings about some major life changes. It'll be interesting to see if this model could be replicated across the country.

2. It's always a great thing to read about people discussing end of life topics, especially people with influence and reach, like Tom Brokaw. Award-winning journalist Brokaw, along with his daughter Jennifer, had just that kind of discussion at TEDx Stanford, "Brokaws talk end-of-life decisions." Not only did they share the national facts, how unprepared most of us are in case a loved one becomes unable to share their health care wishes, but also how the Brokaws have discussed end of life options. It's a great opportunity to expand the national discussion on advance directives and healthcare planning.

3. Those who have a loved one with Alzheimer's, or work closely with Alzheimer's patients and their families, have been abuzz over the news of the National Alzheimer's Plan. Learn more about the plan from this op-ed piece to CNN, "The end of Alzheimer's can start today," by the Alzheimer's Association's senior director of medical and scientific relations. It is an exciting to imagine being able to understand this disease better, and to help millions of affected individuals.

4. Are you considering hospice care for your terminally ill loved one? NHPCO's Caring Connections program offers this hospice checklist to help you prepare for calling the hospice.

5. Hospice care is a covered healthcare service under Medicare, but patients and families often need additional assistance and support. Foundations, such as our Casa de la Luz Foundation, rely on donations from the community to provide supplemental services that are not covered by insurance. Make a donation to the Casa de la Luz Foundation to show your support for hospice care. Supplemental services might include rent or mortgage assistance, funeral arrangements or cremation assistance, groceries, utilities, or more.

Wednesday, May 23, 2012

The Wednesday Image: Solar Eclipse

2012 solar eclipse
Image taken by Brianne Pekar

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, May 21, 2012

Caring for Parents with Dementia

Note to readers: This story is not meant to be a guide, self-help list, or how to re: moms getting ready to die. It’s one individual’s recollection, a dabbing of love on a not so fresh yet hopefully healing wound.

The assisted living facility was on an unassuming tree-lined street, opposite a neighborhood park.  Its front door opened to an anteroom of sorts, complete with two loveseats forming a popular “conversational grouping.”  The space was not fancy or impeccably furnished, but was clean and functional for the residents and staff.  The venue, however, familiar to me due to previous visits, was of minimal importance. 

On this visit, my sister Linda and I travelled together from Tucson, flying into Chicago’s Midway airport.  On the south side of Chicago we rented a car and left Illinois, entered and left the northwest corner of Indiana into Michigan.  We crossed Michigan from west to northeast to arrive at our parent’s vacant home late one April evening in 2007.  Their winterized cottage sat on a cliff overlooking Lake Huron, on the outskirts of a small tourist town.  Our parents’ “home” was now in the above mentioned assisted living facility, called adult foster homes in Michigan.  

We were making a semi-annual visit to see them.  I can’t recall now why we chose April.  Most likely it was a matter of convenience, since Mom and Dad were reported to be doing “about the same” per the facility staff.  Whatever the reason, I am forever grateful that the Universe/our Higher Power conspired to support this springtime travel. 
The following morning Linda and I set out for the facility, about 25 miles away in (another) rural Michigan town.  We called the facility en route, letting staff know we were on our way. 

We rang the doorbell, and a caregiver greeted us. Mom and Dad were ‘awaiting’ our arrival in the anteroom. My mouth fell open upon seeing them. Within 10 minutes I was fighting back tears and having a difficult time not bolting from the facility.  

Historical perspective #1:  My dad had been diagnosed with Alzheimer’s in 1994 and moved into this foster facility in early 2004 after a brief and horrific initial placement experience elsewhere.  I had been involved in looking for facilities for Dad in the summer of 2003 and had vetoed this facility for its lack of aesthetic appeal.  How wrong I was, and how grateful I was for the staff and their care as Dad’s stay lengthened into years. 

Historical perspective #2:  Mom was diagnosed with multi-infarct dementia in 2005, and I had actually been the one to ‘move’ her to dad’s facility in spring of 2006. I refer to the 175-mile moving trip as a “Thelma and Louise” adventure for Mom and me—minus the convertible, alcohol, hot guys, and full consciousness of my travelling partner.  Other than that, a movie remake!

As I “took in” my parents seated on the loveseat that morning, my brain was desperately trying to correct the information my eyes were providing.  My dad’s decline had been gradual yet steady, so I had more or less adapted to the progression of his Alzheimer’s visit to visit.  What I couldn’t seem to grasp was how significantly Mom’s status had deteriorated.  Multi-infarct dementia has a much less predictable disease progression, and while my head held that fact somewhere or another, my heart was definitely experiencing a delayed ‘understanding.’ Mom’s eyes were closed, and the few times they did open, no true focus was evident.  She engaged minimally in the conversation, and showed no animation when any of her ‘favorite’ things were mentioned.  She could no longer walk unassisted, taking halting steps while leaning backwards.  Walking assistance for her consisted of holding her hands and pulling her along.  

Historical perspective #3:  My mother was one of the most grounded aka spiritual people I’ve known, in fact, irritatingly so.  She was totally about her husband and four daughters. She loved music and sang in some choir or another most of her life. She enjoyed reading and ballroom dancing. She believed in and lived a ‘body in motion’ life.  Lake Huron was her holy land, and she loved to garden.  Oh, and she napped most days after lunch, which made her ridiculously cheerful in the evenings.  

The woman, the mother just described, was not in the anteroom that April 2007 morning.  That mother had begun a process both internal and external, one unique to her.  Linda and I were privileged to have witnessed a small part of it.  OK, that morning we didn’t feel privileged.  We were horrified, frightened, indeed feeling very vulnerable and small.  When one of the caregivers announced that lunch was ready to be served, we couldn’t make our excuses fast enough.  We would leave and return mid-afternoon.   

The good news is that Linda and I are sisters in more than the biological sense.  Most certainly our biology and growing up together dovetail with our current powerful ‘sisterhood’ relationship. That evening, on the way back to our parent’s home, we stopped for take-out-something at the local bar/restaurant. Yes, we picked up some wine, and Linda insisted on a DVD.  We sat laughing and crying watching Little Miss Sunshine.  That evening of wine and entertainment and being with a sister/best friend did not change my mom’s course. However, it did seem to help Linda and I start to get our heads around what was happening to Mom. 

We did return to the AFH after lunch that first afternoon, and continued daily visits (not always together) until we careened off to Midway and back home to Tucson.  During those visits, no surprise, Mom wasn’t suddenly bustling about asking about the grandkids.  However, our initial shock took a backseat to an attempt to be present with both parents.  The key word here is ‘attempt,’ as the impulse to engage them, especially Mom, on a more familiar (and functional) level was powerful.  We had to remind ourselves, “This is where she’s at now…be with her where she’s at…” That was pretty much our mantra. 

Respectfully submitted by Patti O’Keefe-Downs, RN

Friday, May 18, 2012

Friday Five Cares

The Friday Five is our weekly roundup of links to smart articles and helpful resources for family caregivers.

1. I stumbled across a blog this past week titled, Alzheimer's - My Mom My Hero, and the entries will make you smile even as tears come to your eyes. Lisa Hirsch, the blogger, writes about her experience having a mom with Alzheimer's. Lisa also offers perspective as a long-distance caregiver. Her entries are sad, heartwarming, touching, and just all-around compelling. I think it's an interesting read for anyone who had/has a loved one with Alzheimer's, or for anyone who's just interested in learning more about Alzheimer's.

2.  Speaking of Alzheimer's, did you know that 5.4 million Americans are living with Alzheimer's, according to the Alzheimer's Association? Learn the 10 warning signs of Alzheimer's. An early diagnosis offers more treatment options, and more time for you and your loved one to plan for the future.

3. It's so easy to get caught up in caring for your elderly parent or your seriously ill spouse, but research shows that family caregivers end up putting their own health at risk. U-T San Diego featured an article on just this issue earlier in the week. "Don't forget to care for the caregiver" cites studies that found "20 percent of employed female caregivers over 50 years old report symptoms of depression, and younger female caregivers say they experience stress at home." It's important to know the symptoms of caregiver burnout, and how to respond appropriately. We hope you find this article to be a good reminder why.

4. Speaking of caring for the caregiver, we always encourage family caregivers to locate resources in their community. Local agencies on aging, such as Pima County's Pima Council on Aging, offer information to services, workshops or classes, referrals, and more. These agencies are a great resource for aging adults, or for caregivers of an elderly adult.

5. Casa de la Luz Hospice has made a commitment to honoring our nation's veterans, and we are always interested in hearing great veteran stories. This week, our very own Tucson12 posted a great YouTube video with a veteran who shared his story as a former prisoner of war. Watch Remembering Our Heroes to listen to Lew Sleeper's story.

Wednesday, May 16, 2012

The Wednesday Image: Office Wildlife Surprise

Gila monster at Casa de la Luz Hospice offices
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 featuring what we love and appreciate most about life in Tucson.

Monday, May 14, 2012

Tips for Providing Long-Distance Care

Unlike our grandparents, and maybe even parents’ generations, most of us are not born, raised, and living in the same home—or even city or state—as we grew up in as children.  School, jobs, and other opportunities take us across the country and around the globe from where our parents and loved ones live. So what happens when someone we love gets sick? How can we care from a distance?

Keep in Touch.
It’s important to keep in regular contact with your loved one and those who are caring for him or her – especially if you are not the primary caregiver.  By talking regularly with the primary caregiver, you not only know how caregiving is going, and what concerns there are, but you are able to talk through issues together and alleviate some stress. The primary caregiver will also appreciate your interest and support.

One way to easily keep in touch with your loved ones is by using Skype, which allows you to make free video calls over the Internet.  Not only will you be able to talk with your loved one, but you’ll have the extra comfort of being able to see them too. Plus they can see you!

Get Educated.
There is a wealth of information online and at your local library concerning cancer, Alzheimer’s and other diseases.  Take the time to do some research to understand the diagnosis your loved one has been given.  Since you can’t be at every doctor’s appointment, it is good to get a basic understanding of what to expect.

Our sponsored site, Living with Serious Illness is a great website that provides information on how to cope with a serious diagnosis. The site also offers resources for many illnesses as well as tips on how to handle them.

Know You’ll Have to Make Difficult Choices.
Caring for a loved one from a distance will involve difficult choices.  Knowing you will have to balance work, family, and finances with your dying loved one will not always be easy.  First know that you’re not alone!  There are many people out there who are struggling with these same concerns.  Second, know that you can’t do it all, and that’s okay!  Make a list of priorities and tasks and only do what you’re able to do. 

Caring from a Distance is an organization for long distance caregivers that give helpful tips for those not close to their loved ones.  There are even tips and resources for military service members who are caring for their loved ones while stationed abroad.

Know your company’s time off policy as well as the regulations for the Family and Medical Leave Act (FMLA). Don’t be afraid to ask if your company offers flexible work options in case you need to be with your loved one for an extended period of time, or if the company provides assistance to family caregivers.

Caring for your loved one from a distance is not an easy task, but there are people and resources to help you during this difficult time in your life.

By Brianne Pekar, Administrative Support for Casa de la Luz Hospice

Friday, May 11, 2012

Friday Five Faces Caregiving Issues

1. There's a lot of information to keep track of, take in, and report when you're a family caregiver. The doctor wants to know how the individual is doing with medications; hired caregivers need instructions; there are multiple medications to manage and dispense. Checklists, maintaining organized files, and other information-tracking tools can help caregivers stay on top of all the information. This checklist for communicating with health care providers from Family Caregivers Online helps you stay on top of medications, symptoms, allergies, and more. It offers a guideline of questions to ask the doctor, and keeps your notes organized in one spot.

2. Are you a single boomer adult, still independent, but starting to plan for the next phase of life? You don't have any kids and you never married, and you're asking yourself, who will care for me if I can no longer care for myself? Who will look out for me to make sure I'm alright? Sally Abrahms wrote about this issue, "No Kids, Who Cares?" in the AARP blog last week. She explores some of the solutions today's independent boomer women are coming up with, including co-housing and pocket neighborhoods.

3. Family caregivers are very often women, and they are very often spouses. The New York Times Well section acknowledged that earlier this week in an article from Jane E. Brody, "Caregiving as a 'Roller-Coaster Ride From Hell.'" The article shared the trials and tribulations of a couple caregiving spouses, and offered a lengthy list of tips to help with caring for a spouse. The main takeaway point is to ask for help when you need it. Caregiving is a heavy burden, and you shouldn't try to carry it all by yourself.

4. I think the New York Times knocked it out of the park with this May 5 article, "When Illness Makes a Spouse a Stranger." The article and accompanying video, and the story of the French couple, brought tears to my eyes. Michael French suffers from frontotemporal dementia. His wife was his primary caregiver before finally putting him in a nursing home because caring for him was putting both of them at risk. These are the tough battles that millions of family caregivers face every day.

5. A home can become a bit of a battlefield when someone becomes disabled or no longer has a full mental capacity. In order to accommodate changing needs, and making sure the person you're caring for remains safe, this Home Modification Checklist from the National Caregiver's Library can help you go through your home and spot potential safety problems.

Wednesday, May 9, 2012

The Wednesday Image: Spring Awakening

Baby quail
Image provided by Fred Zimmerman

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

Monday, May 7, 2012

How To Prepare For Your Hospice Evaluation

Hospice care is a service, covered by Medicare, designed to serve patients in the last six months of life.  The holistic approach to care ensures that a patient’s medical, emotional, and spiritual needs are fulfilled. The hospice team also addresses the needs of the caregiver and family supporting the patient. To learn more about hospice care, contact your physician for a referral, or visit Caring Connections to search for hospice providers in your area.

Here are some suggestions to help you prepare for your hospice evaluation. 

Once you call the hospice provider, you’ll make an appointment to meet with the hospice representative. He/she will be determining whether or not you are eligible for hospice services.

Be ready to give the hospice provider some of your healthcare basics. They’ll need the full name of the patient, the patient’s address, and a telephone number for the patient’s medical power of attorney. The hospice is also likely to request the name and phone numbers of your physicians and the patient’s primary diagnosis. The primary diagnosis is the reason you’re requesting hospice services, such as cancer, dementia, congestive heart failure, etc.

Just like you might research a big purchase before buying, or research a neighborhood before moving, you can research and compare hospice providers. Medicare requires providers offer the same core services, so you’ll want to focus on the quality of care that will be provided to you and your loved one.

Look for data. Ask questions.

  • When was the hospice established?
  • How soon did the hospice respond to your request for an evaluation?
  • How many patients, on average, does the RN case manager see?
  • What is the hospice’s average response time to a call—during office hours and after hours?
  • How many hospice physicians are on staff, and what is their experience and qualifications?
  • How many nurses are certified hospice and palliative care nurses?
  • Can the chaplains connect you and your loved one to your preferred faith community?
  • What is the experience level of your social worker?
  • Is there an inpatient unit? Where is it located, and how is it staffed?
You can also use this helpful, downloadable pdf from Caring Connections to guide your meeting with hospice providers. The Choosing a Quality Hospice pdf was developed by the National Hospice and Palliative Care Organization, and provides a number of questions and space for you to take notes. 

The end of life is a sensitive, emotional time. You want to choose the hospice provider who can respect and support your loved one’s needs and your needs. The goal is to offer your loved one comfort, peace, and dignity in the last months of life.

Learn more about the benefits available to you with this pdf download of the Medicare Hospice Benefits booklet, provided by the Centers for Medicare and Medicaid.

If you are seeking hospice in the Tucson, Arizona area, Casa de la Luz Hospice would be happy to offer you information regarding our services or answer any questions you might have about hospice care. We can be reached at 520-544-9890 every day of the week, any time of day.

Information provided by Jane O’Mahen, Admission Nurse for Casa de la Luz Hospice

Friday, May 4, 2012

Friday Five Cares for Others

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

1. We believe in honoring veterans at the end of life. Casa de la Luz offers an honor ceremony to our veteran patients, and we participate in the national We Honor Veterans program. If you're looking for a way to give back to these servicemen and women, there might be volunteer opportunities within your regional Veterans Affairs center. Learn more about VA volunteer services through their website.

2. Aging in our society isn't easy, on the person who is getting older and perhaps less able, nor is it easy on the family member(s) who have to provide assistance. Here are a few tips in this article from The Atlantic, "How to Care for Your Aging Loved Ones While Still Taking Care of Yourself." It's interesting to note that the research mentioned in this article shows that it's really the little things that seem to matter most in the end.

3. Have you consider how you'd like to age? Maybe you're still healthy and independent today, working full-time. Chances are it won't be this way forever, and when it isn't, how would you like to go about with your life? If you can't take care of yourself, who will assist you? This article from the Vail Daily News, "Boomers want to age in one place," raises these questions. If you're anything like most people, chances are you would prefer to remain in your own home. Are you prepared to do that?

4. Family caregivers are an oft-mentioned topic on this blog. The hospice team relies on the assistance of the primary caregiver (often a family member) to alert us if the patient is having a crisis episode, if the person's appetite has changed, if the person is experience symptoms more frequently or with more intensity. This week in the Lotsa Helping Hands blog, they wrote a great entry about Caregiving Youth: A Hidden Population. When it comes to family caregiving, it can be an all hands on deck situation, including the hands of that teenage grandson or granddaughter. If this sounds familiar to you, remember to recognize the needs of that young caregiver, too, with words of thanks or a couple hours of respite.

5. We hope that when you read this blog, it offers you insight--into caregiving issues, hospice care, dealing with grief, advance planning. These are the issues that surround our work. And as you read, we hope it empowers you in your own life. You can be your greatest advocate, or perhaps you are the advocate for a loved one--mom, dad, husband, wife. Utilize your resources, ask questions of the experts, seek out help. If you, or someone you love, is facing the last six months of life, don't be afraid to ask your physician about how hospice care can assist. You can also just call us for a hospice evaluation. Learn more about Casa de la Luz Hospice's services and how to contact us for information or an evaluation.

Wednesday, May 2, 2012