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, December 30, 2011

Friday Five: Aging and Caregiving

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

1. For a thorough online resource about aging and end of life issues, MySeniorCare offers information, education, and support. Their End of Life section includes a question and answer section, and links to articles explaining what hospice care is, the insurance options, and the levels of hospice care.

2. A common concern for everyone as we age and/or if we become terminally ill is the matter of finances. NHPCO's Caring Connections Planning Ahead section includes quick, easy-to-read advice about identifying sources of financial help. There's also a handy pdf of a Financial Inventory Worksheet to assist you in evaluating financial assets.

3. The New Old Age blog from the New York Times always offers interesting content to help drive the conversation about aging in the U.S. This week they discuss the question of whether or not physicians need to discuss overall prognosis with elderly patients, regardless of whether or not a terminal illness is present. The discussion is being sparked by an article the New England Journal of Medicine, from a palliative care specialist, a geriatrician, and an internist. I don't have to tell you that we think it's a great idea for individuals to talk to their doctors about probable prognosis, and that a conversation such as this would encourage advance health planning and discuss an individual's quality of life in their final years.

4. Have you recently become a caregiver for someone with a heart-related illness or condition? The American Heart Association has several resources to help support you in your caregiving journey. Consider downloading and printing their Journal Pages, designed to offer caregivers inspiration and help you through the process of caring for a loved one. For many, the keys to not letting caregiving overwhelm you mentally, emotionally, and physically is to stay organized and remember to care for yourself and give time to rejuvenate your spirit.

5. Are you or a loved one fighting COPD, chronic obstructive pulmonary disease? Living with Serious Illness offers a great resource page to help improve your daily life with COPD. Articles include avoiding crises, relaxation techniques, how diet affects breathing, and more.

Tuesday, December 27, 2011

The Wednesday Image: Hawk

A hawk rests outside the offices of Casa de la Luz Hospice
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, December 26, 2011

Determing Your End of Life Goals

As we approach a new year (already!), many of you might be thinking about resolutions. Every year, we welcome a new year with expectations, goals, resolutions. “I resolve to save more money.” “This year is the year I will lose that extra 10 pounds.” “I resolve to be less addicted to Facebook.” 

In hospice, we set goals too, and we encourage our patients to consider what their goals are. These goals are the things that will give us hope at the end of life. The hospice team, the nurses and social workers and chaplains, go in and they ask patients, what do you want for the end of your life? They ask you to define your wishes, your goals, and they strive to create a care plan that achieves what you want. 

What does a hospice patient’s goal look like? “My goal is to die without pain and in peace.” “My hope is that my family is taken care of after I am gone.” “I want to leave this world without any anger or regrets.” These resolutions emphasize the quality of our life . They emphasize respecting our dignity and individuality, our beliefs, and they give us comfort in the final phase of life. 

There’s a terrible myth out there that by choosing hospice care, people are giving up. Defining our goals for the end of life, though, helps us realize that we’re not giving up. We can still accomplish something during the end of life journey, and choosing hospice care means letting a team of people support you and help you accomplish your final life goals. So far, during my short time working in hospice, I have heard wonderful stories from hospice professionals about reuniting families, providing much-needed relief and support to primary caregivers, and supporting hospice patients and loved ones through the end of life journey into a peaceful death. That is our goal—to provide you and your loved ones with superior hospice care.

What are your goals for the end of life? How can hospice services help you achieve those goals?

By Carrie Bui, Communications Specialist

Friday, December 23, 2011

Friday Five Focuses on Family Caregivers' Needs

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

1. If you're a caregiver, or a family member of a caregiver, remember these points from this Nevada Appeal article this holiday weekend, "Caregiving Over the Holidays." Perhaps the best gift you can offer a caregiver is a little extra support, a good ear, and some respite from their daily duties.

2. Speaking of gift ideas for caregivers, AARP Caregiver blogger Amy Goyer compiled a two-part Christmas wish list. The first part of her Caregiver's Christmas Wish List offers the more intangible gifts she would like as a caregiver for her aging parents. Use this list to help inspire the thanks you offer to the caregiver in your life, and let's remember that this wish list is probably good any time of the year, not just Christmas.

3. There's always going to be day when it feels like just a little too much. The National Family Caregivers Association offers some messages to live by. When it gets a little hard, when you're not sure you can do it, read NFCA's Believe in Yourself.

4. Dementia is a complicated and heartbreaking disease, especially hard on family caregivers. Read the Family Caregiver Alliance's Guide to Understanding Dementia Behaviors for helpful suggestions on communication and managing difficult behaviors.

5. Subscribe to our monthly e-newsletter, Because Every Day Counts! The newsletter offers lots of handy tips for family caregivers.

Wednesday, December 21, 2011

The Wednesday Image: Happy Holidays!

Winterhaven Festival of Lights, 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 that represent what we love and appreciate most about life in Tucson.

Monday, December 19, 2011

Six Steps to Dealing with Grief During the Holidays

The holidays are supposed to be joyful and cheery, filled with family and friends.  Grief does not fit with this picture.  The losses that we experience after the death of a loved one thrust us into a painful, difficult, lonely journey.  Even if we feel we are moving forward and mourning with some sense of normalcy, it is as if our journey is stalled at the holidays.

What I know about this time, however, is that the journey continues.  Unless we are ready for what will occur, we can get swept up in the turmoil and chaos of the holidays, and we feel overwhelmed and more lost.

So what can help us through this time?

1. Be aware of what is happening.  Don’t avoid the holidays, but pay attention to the experience happening around you and most importantly, in you. Just as importantly, don’t try and do the holidays as if what is happening to you is not happening. To try and pretend that everything is the same as in the past can be harmful.
The feelings at this time are often very intense, even greater than you may expect. Don’t hide from your feelings.  Let yourself cry if you feel like crying; laugh if you feel like laughing; yell if you feel like yelling.  Feel your feelings and know that they are ok, and don’t let other people tell you what you should or shouldn’t feel.
2.  Plan for the journey through the holidays.  Even over-plan your time.  Prepare in advance for what you think may be a stressful time.  The past with all of its memories will propel itself into your experience. There will be times of panic when you are not sure what to do. Be willing to talk with others – your family or a close friend or a counselor and let them hear your plans.  Be flexible with your plans.  Give yourself the leeway to change them.
3. Don’t go alone during this time.  Seek out the company of others who support you.  Let this company be those who will talk about your loved one, who will acknowledge the absence and will let you express your feelings, tell your stories, share the memories and who will be willing to express their own.  Ask for what you want.  This is often hard to do, but your willingness to be open with your needs and wants will help you and others around you to be of support.
4. Take a new path that is different from what you traveled in past holidays.  You do not have to do the same things that you have always done to honor your loved one.    Seek out new ways of doing past traditions. Do something different. Reflect on the past traditions and rituals. There may be some that you want to continue and have the energy to do.  The important thing is for you to be in charge of your decisions. It is best not to make major changes during this time, but even small changes may help to make yourself comfortable on this new path.
5. Rest on the way lest you are physically worn out by the holidays.  Be gentle with yourself. Accept your physical limitations and that the energy it takes to mourn is still a part of this time.  Don’t get caught up in hectic holiday activities.  Get plenty of sleep, and take breaks away from the overstimulation of these days. Take a walk or take a nap and remember to breathe.
6. Be ready to be surprised by what might come your way.  It is possible you will be surprised by the pain of the holiday journey.  But it is just as likely that you will be surprised by the small bits of joy that creep in when you least expect it: the surprise telephone call or note from an unexpected source or an unanticipated invitation.  Be ready for those surprising moments of delight because you never know when they will come

 By Frank R. Williams, Director of Social Services

Friday, December 16, 2011

Friday Five: Health Planning

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

1. The Los Angeles Times' Steve Lopez did a wonderful article this week about the importance of advance directives. His article, "Having to think about the unthinkable" points out the need to discuss our final wishes and offers some advance directive resources.

2. I'm sticking with a theme for today, and that's advance directives. We continually encourage individuals to make sure they've considered how they would want to spend the end of their life, and then to share that information with their loved ones. And, then you need to go even further, and you need to write that information down, using a legal document, and share it with your physician and your attorney. Here's an FAQ on Understanding Advance Directives so you can know where to start and why to start, today.

3. One of the big things, and seemingly simple things, is the need to designate a medical power of attorney, healthcare agent, the person who will make your medical decisions when you are no longer able. It's important to choose someone who knows your wishes, who will follow your wishes, who will take responsibility for them. And, if you are the medical power of attorney for someone else, those are the points you have to remember too. Caring Connections offers a thorough and helpful article on their website, Healthcare Agents: Choosing One and Being One. Use this a resource to help guide your decision.

4. For a little less reading today, how about a video to help start your advance directives conversation? Lindsay from Aurora Health Care in Wisconsin leads a series of videos about Five Wishes and advance directives. The videos are all about a minute to a minute and a half in length, and she answers some of the questions you're probably asking yourself. Try starting with this one: How does an advance directive help my family?

5. I'm hoping you're ready for this link now, that you have a clearer understanding of advance directives, why they're important, and you're ready to discuss your end of life wishes now. Let the Casa de la Luz Foundation help you out by providing you with a free copy of the Five Wishes. You can submit a request online to have a hard copy mailed to you, free of charge, you can call the Foundation at 520-544-9890 to ask for a copy, or you can use the link on our website and fill out the Five Wishes online.

Wednesday, December 14, 2011

The Wednesday Image: Foggy Morning

Sun trying to break through the fog, 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.

Monday, December 12, 2011

Explaining Hospice Services

Hospice care is a philosophy of care dedicated to treating the patient as a whole person. This means that hospice services are designed to meet a patient’s medical, emotional, psychological, and spiritual needs. They also provide support to the patients’ loved ones through education and bereavement counseling.

Hospice care is covered under the Medicare Hospice Benefit, and is also covered by Medicaid and private insurance plans. Patients are considered hospice appropriate when a physician has certified that a patient is terminally ill with six months or less to live, if the illness runs the expected course. Patients who choose hospice agree to forgo any treatments designed to cure the terminal illness. 

Hospice care focuses on providing comfort care, by providing pain relief and managing symptoms. (Medicare continues to pay for covered benefits for health problems that are not related to the terminal illness.) Hospice services are not limited to a set amount of time; care continues as long as the hospice physician recertifies that a patient is terminally ill.

What do hospice services include?

A hospice patient receives regular visits from a nurse who works closely with the hospice physician to manage symptoms in order to ensure the patient is comfortable. Hospice services also include social services support from a licensed social worker, and spiritual counseling is available, if the patient desires it. 

The hospice benefit includes the medications necessary for pain relief and symptom control, and the medical supplies and equipment needed for the patient to manage their terminal illness in the comfort of their own home. Home is defined as wherever the patient resides, whether it’s a private residence, assisted living facility, adult care home, or a nursing home.

Casa de la Luz Hospice also offers Arizona’s first residential hospice home, Kanmar Place. The home is licensed as an assisted living home, but all of the residents at Kanmar are hospice patients. They receive care and support from the interdisciplinary team as well as Kanmar’s certified caregivers.

A home health aide is available to make regular visits and assist with personal care needs such as bathing and grooming. A hospice volunteer can be provided to offer companionship to the patient and respite for the caregiver.

When symptoms are too difficult to manage at home, many hospices have an inpatient unit available to provide acute symptom management. If the symptoms are stabilized within the inpatient unit, the patient can return to the comfort of their home. The Casa de la Luz Hospice Inpatient Unit offers nine private patient rooms and is conveniently located adjacent to Northwest Medical Center.

Grief support services are available to the family and loved ones after the patient’s death. Casa de la Luz Hospice offers a variety of bereavement services, including one-on-one counseling, grief and loss support groups, and a public memorial service twice a year to remember the patients who have died in our care.

If you’d like more information about hospice, please talk to your physician or contact Casa de la Luz at 520-544-9890 or info@casahospice.com.

by Carrie Bui, Communications Specialist

Wednesday, December 7, 2011

Friday Five for Caregivers of Elderly Parents

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

1. In today's tech-heavy and tech-savvy world, people are finding new ways to connect with one another, utilize resources, and make tasks easier or more efficient. American Medical News posted an interesting article this week about "How technology can connect doctors and caregivers." As a family caregiver, have you ever considered what it would for your responsibilities if you could use technology to supplement care and stay organized and connected to your loved one's physicians or the other individuals who might provide care to your loved one? This article explores the concept. Do you already use technology to do that? Leave us a comment and share your tips for utilizing tech tools to manage caregiving.

2. My constant favorite blog, The New Old Age from the New York Times, had an entry this week about this fun sounding project called The Legacy Project: Lessons of Living from the Wisest Americans. The project comes from a Cornell professor who collected advice for living from America's elders. Individuals, seniors in their 70s and beyond, share their advice, their tips, their wisdom. You can check out the website with stories, audio interviews, and videos of the elders or you can pick up the book version, 30 Lessons for Living: Tried and True Advice from the Wisest Americans.

3. AARP recommends that now, the season of holiday get-togethers, is a good time to check in and see how your older relatives are doing. The article, "Holidays are a good time to assess how your elderly parents are faring," addresses four key areas to observe. Your relative or parent may not have noticed or acknowledged that there could be a potential need for additional assistance.

4. There was a fascinating article this week that's been passed around the hospice and palliative medicine community on Twitter. It comes from Zocalo Public Square and is entitled "How Doctors Die." It's an interesting look into what doctors choose for themselves in regards to the end of life, and how that differs from what the end of life looks like for the average Joe patient. The article states, "Of course, doctors don't want to die; they want to live. But, they know enough about modern medicine to know its limits." If that's the case, then why do so many physicians go to the extreme measures to prolong a patient's life, often at the expense of quality of life? Education and awareness will be the key to helping patients and physicians discuss death.

5. We're always looking for useful resources online to recommend to family caregivers. This week I found this PBS website, Caring for Your Parents. Those who are new to caregiving, especially for an aging parent, will appreciate the site's Caregiver HandBook. You can read through the quick guide online or just to download it as a PDF document.

The Wednesday Image: Fresh Fruit

Pomegranate tree at Tohono Chul Park, 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.

Monday, December 5, 2011

Tips for Caring for an Ill Loved One at Home

The veteran home care nurse and the rookie nurse entered the home of a woman who needed daily IV antibiotic therapy.  As he washed his hands, the nurse asked about the patient’s garden, and they shared garden secrets while he got a wire hanger from the closet, attached the IV bag and hung it on the curtain rod.  As the two debated fertilizer versus compost, the nurse hooked up the IV and then turned the conversation to the woman’s health.  I, the rookie, was in love…with home health. 

Home health and home hospice are about the patient and family, and about bringing services into their home.  The goal is to discover what people need, to empower patient and caregiver, and to give them what they need in the least invasive and most respectful manner possible.

Family caregivers need wipes, gloves, and skin cream.  They also need to be taught skills and given the tips to make living with illness and caregiving easier.  Here, in no particular order, are some helpful hints and tips from a nurse who fell in love with home care 15 years ago.

  • Olive oil is a great lip balm.
  • A box of baking soda absorbs odors.
  • Have hand sanitizer near the front door and tell everyone to use it.
  • Buy a dozen or more washcloths at the discount store.  Cheap ones get softer faster.  They’re great for cooling a hot brow, wiping a sweaty back and cleaning the diaper area.  Launder in hot water with soap and bleach.
  • Sippy cups are handy and less messy than straws.
  • Call bells.  Jingle bells.  School bells.  Whistles.  There are so many choices.  Consider a wireless door bell.  The caregiver can carry the bell in a pocket anywhere in the house and often in the yard. 
  • Designate shelves or drawers for supplies and health care paperwork. 
  • Keep a notebook or whiteboard to write down needs and questions for the nurse, social worker, or home health aide.
  • Take pain medicine when pain starts.  Most pills take about 45 minutes to work.  When you wait until “it really hurts,” it usually takes more pain medicine over time to get you comfortable.
  • Children often feel scared and helpless around sick people.  Give them a job and let them know how it helps Grandma or Tio.  Tiny children can fetch a washcloth or pat a hand.  Little children can draw pictures and put lotion on Auntie’s hands.  Older children can keep cool water at bedside or make a sign telling everyone to use hand sanitizer.  Teenagers can get a cup of ice chips at the convenience store and do nail care.  Assign tasks according to the age and temperament of the child.
  • Music that the patient likes is soothing.
  • Every time you turn the patient, use a damp washcloth to wipe their back.  If they need it, apply lotion, cream, or powder.
  • Laugh.  Laugh with one another at all of the awkwardness and absurdities.  See the humor in mistakes and misunderstandings.  Allow jokes to help you deal with the horror of disease (one family called Mom “Lefty” after her mastectomy) and the messiness of illness. 
Life is messy.  Illness, caregiving, dying, and grieving are some of the messier parts of life.  None of us can do it alone.  Not even you!  So please, do the people who want to help you the honor of asking for help.

By Mary Toren, RN

Friday, December 2, 2011

Friday Five for the Family Caregiver

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

1. I was completely absorbed by this article in Salon, "The dilemma of taking care of elderly parents" by Lillian Rubin. It's a wonderful article, written by an elderly parent with a middle-aged daughter who tries to stick close by and call more often as her mother ages. Thanks to the writer's personal perspective, the article highlights the struggle between the still healthy, but aging parent, and the sandwiched son/daughter balancing work, family, and the worry of keeping an eye on that aging parent.

2. The Chicago Tribune took some time this week to recognize that caregiving is not always a responsibility left to blood relatives. Their article, "In caregiving, bond is often more important than blood," highlights the fact that many of us might rely on help and care from neighbors and good friends, people we're close to and who might feel like family, but aren't actually related. The article includes some good advice on putting caregiving agreements into writing, so that both parties can be protected later.

3. Open enrollment for Medicare ends December 7. If you have not yet enrolled, and are trying to navigate your way through what it will cost you, how to apply, and the benefits of the Medicare plans, visit Medicare.gov, the government's official website for Medicare. On the site you'll find videos, articles, and you can fill out your application online.

4. Family caregivers typically are juggling multiple responsibilities, and may not have the time or the freedom to stay home with an aging loved one. Many choose to hire outside assistance, but when you're inviting someone into your home, to care for your elderly mom or dad, you want to know you're making the right decision, trusting the right person. This Pathfinders fact and sheet, "Managing Care Helpers in the Home," is a simple Q&A format with valuable guidance about what information to convey to a care helper and warning signs of abuse, neglect, and/or exploitation.

5. It must be the holiday season because the weather in Tucson went from gorgeous to gloomy overnight. Have you started your gift shopping yet? (Don't worry, I'm not finished shopping yet either.) Here are some good gift suggestions for the family caregiver in your life from Caregiving.com. This year, why not give them a gift that will really help them?