Friday Five: Caregiving for the Terminally Ill

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

1. Because we all love a feel-good, heartwarming story, we especially loved this video from NBC Nightly News about a terminally ill woman getting her last wish granted. She's one lucky grandmother.

2. No one would ever say working in hospice is easy, but it is incredibly rewarding work. If you ever wonder what it takes for hospice workers to do what they do, this is a lovely article, "A Day in the Life of a Hospice Worker" by Rev. Amy Ziettlow.

3. For many family caregivers, this isn't a role they spent a lot of time studying and researching. It's a role you're thrust into as parents or spouses age, and you learn along the way. This list of Caregiver Tools by the Hospice Foundation of America can help you.

4. There's a wonderful slide show on AARP's Caregiving section of their website, 9 Secrets of Caregiving. These are some valuable tips to remember as you take care of your loved one. I especially like the first secret, keep your own medical records.

5. It's not easy meeting with your doctor. Sometimes, it's hard to get in for an appointment, and then once you're there, you're never sure what you need to ask your doctor. Inevitably, you feel as though you've forgotten one of your questions. Here's an article from Living with Serious Illness about Talking with Your Doctor to help you feel a little more prepared for that next appointment.

The Wednesday Image: Woodpecker

A woodpecker visits a backyard tree.

Image taken by Deborah Cassolis

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

Death Comes At Its Own Time

“What is she waiting for?” “Why won’t he just let go?” These are questions that are sometimes asked by the family and friends of a person who is dying. Making the decision to choose hospice care and not seek curative treatment is extremely difficult for patients and their loved ones. For some, the hard part may be just beginning.

Hospice strives to help people die with dignity and be comfortable. We also want to do whatever possible to make sure that family and friends understand everything that is happening with their loved one. Sometimes people follow a well-traveled and fairly predictable path during the dying process. Other people create a completely unique road that leaves loved ones confused. Once someone has accepted their own or their loved one’s impending death, often the difficulty turns to the period of waiting for death to come.

In many respects, entering this world is very similar to leaving it. Everyone knows what is coming, but they don’t know when it will occur. Even when the dying person is kept completely comfortable, waiting can be agonizing for family and friends. It also can make loved ones second guess some decisions they have made along the way.

I had a gentleman say after days of waiting for his wife to pass, “Maybe she should have had that surgery…I never knew her will was that strong.” In her case, she and her husband had lengthy discussions about what course of action they should take, and the patient decided she did not want any further procedures or tests. Her husband was following her wishes, and he was struggling because in his opinion, end of life was not coming at the pace he thought it should.

Many believe that some unresponsive hospice patients are conducting a “life review.” Many people live long and colorful lives, and they may choose to take a long period of time to reflect on their experiences, relationships, and travels. Many healthcare professionals believe, and studies have shown, that even when a dying person is not responding, they can hear much of what is said around them, if not everything. They recognize familiar voices, and they wish they could respond. During this time, I suggest family members tell stories and include their loved one in the conversation. Say, “Remember that time, Dad, when we all went to the lake…” Telling stories will help pass the time, and can be a form of therapy for the family.

If your loved one is dying, but the waiting is causing you distress, take comfort in the belief that they are reflecting on their own journey in this world. Help your loved one in his/her mission and on his/her journey, and it may help you also with the waiting.

By Kim Bingham, Social Worker

Friday Five

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

1. Sept. 21 was Alzheimer's Action Day. Learn more about Alzheimer's disease by taking the brain tour on the Alzheimer's Association website. The tour is available in a variety of languages including Vietnamese, Bosnian, and German.

2. The Villas Blog offers helpful links about healthy living and aging well. It's run by The Villas at La Canada, a Tucson assisted living and memory care neighborhood.

3. One of the challenge's in hospice is explaining to others that terminally ill patients who choose hospice are not giving up. "Go Ahead. It's Okay to Die" by Janice Van Dyck is a well-written piece that explains why families and patients need to understand that for a terminally ill patient, letting go can be the more peaceful choice. Van Dyck writes, "Never underestimate the power of letting go. Likewise, never forget the price of holding on too long." 

4. Have you done a BenefitsCheckUp yet? This tool is a service from the The National Council on Aging, and it can help connect you to public and private benefits programs. It could be a good opportunity to discover additional resources.

5. Have you liked us on Facebook yet? The Casa de la Luz Facebook page offers a morning inspirational quote, links to articles and resources, and tips on caregiving, dealing with grief, and what to expect during the dying process.

The Wednesday Image: Sunset Reflection

The sky reflects off of a backyard pool at sunset

Image taken by Nancy James, northwest Tucson

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

Hospice Misconceptions: It's Not Just About Dying

One of the misconceptions I often encounter is that hospice is only about dying. While it is the case that hospice cares for people at end of life, hospice workers want to help our patients live the time they have remaining to the fullest. I’m reminded of two patients who had the chance to experience this while receiving assistance from hospice.

The gentleman met me at the door and welcomed me into his home. On that first visit we talked about his youth on his family’s farm in the Midwest prior to World War II. He had been drafted into the army during the war, and through an assignment with the military he came out West and fell in love with the desert.

He worked as a mechanic after the war, in a town near where he had grown up. He worked and saved until he could move his family to Arizona. He always talked about how active he had been in his work. Like many of his generation, work was life, and work was dignity. Also, like many in his generation, he did not quit working when he retired, he just changed his focus. He owned an old classic car and kept it in the driveway in mint condition. Keeping the car and his home in good condition were signs of his dignity as well. After the first visit was over, he walked me to the street and retrieved his mail while saying good-bye.

When the illness that ended his life began to limit his daily activities, we were able to manage his symptoms successfully. He was so pleased that he felt well enough to cut back the trees and bushes in his yard and shine up the car a little. He told me, “I’m sick, but I never knew there were people like hospice to help me keep going.”

I knew the end was near when he could no longer meet me at the door, or walk down to the end of the driveway when our visits were over.  He knew it as well, when he asked me to pick up his mail for him.

He expressed fears that he would have to leave his home. In the end, he moved into the veterans’ hospital, but as he said, “Hospice kept me home and independent for most of my illness.”

This emphasis on living and dignity was well understood by another patient and his wife. When cancer began to limit his activities and life expectancy, they made the decision together that hospice was their best option. She called their friends to tell them that hospice was now going to help care for her husband.

She laughed when she told me how almost everyone expressed sympathy at that point because hospice was involved. She said, “I told them, don’t tell me you’re sorry, this is a good thing.” She explained that they all knew that her husband had a terminal illness prior to hospice involvement; what they did not know, was that comfort care and support provided by hospice would make his remaining time the best it could be.

At first, because his symptoms were well controlled, her husband was able to walk around his neighborhood and meet friends for lunch. His friends were then able to understand that while they were losing their friend, hospice indeed was good for him. As his illness progressed, he was confined to his home, but was still feeling well enough to receive friends and family. His wife expressed her gratitude for the quality of life he had and how they experienced quality time together up until his death.

Hospice exists to manage the pain and other symptoms that come with life-limiting illnesses. We also serve the patient’s family members with grief support and other issues that may occur at the death of a loved one. Because hospice serves at the end of life, it is easy to understand why there might be misconceptions about hospice care. Hospice serves the dying, but it is truly about helping patients live their lives with care and dignity.

By Tom Saunders, Chaplain

Friday Five

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

1. I always enjoy catching up on the New York Times' New Old Age Blog. The entries are always well-written and engaging, with insightful comments or helpful suggestions for family caregivers. Thursday's entry, "When It's Time to Hit the Road" discusses the challenges of traveling when you're caring for an elderly loved one. The writers offer an extensive list of suggestions for the situation of traveling with your loved one or for leaving a loved one at home while you are traveling.

2. I discovered a new family caregiving blog this week written by an LCSW (licensed clinical social worker) in New York. Christine M. Valentin is a geriatric social worker, and previously an elder abuse specialist. Her most recent blog entry talks about "Hiring the Right Caregiver" for your family member or loved one. We know that sometimes a person's needs can extend past what the average person can offer, and when that happens, you want to make sure you find your loved one the best care possible. We'll definitely keep following Christine's blog for more valuable articles.

3. A great resource for seniors in Tucson is the Pima Council on Aging. Their website lists programs and services, volunteer opportunities, and it has a calendar of local events.They also produce a monthly print publication called Never Too Late.

4. It can be hard to know where to start when looking for care for an elderly loved one. The U.S. Administration on Aging offers this Eldercare Locator tool to assist you in finding services for you and your aging family member.

5. The Hospice Foundation of America's Hospice and Caregiving Blog included an interview with Elizabeth Clark, Executive Director of the National Association of Social Workers. She discussed the organizations end of life care initiatives and the social worker's role for a patient facing the end of life.

The Wednesday Image: Monsoon Season

Owl Head Buttes, north of the Tortolita Mountains

Image taken by Agnes Poore, July 31, 2011

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

Family Testimonial: Hospice Care Helped Us Say Goodbye

My mother-in-Law Mae Chimblo had been suffering from Alzheimer’s disease since 1999 and had lived in several nursing homes since 2003.  Her daughter, my sister-in-law, Arlene, was also in the last stage of cancer.  My husband and I live in Tucson, and Mae and Arlene were living in Connecticut.  We knew Mae and Arlene needed our care and attention, and so we made arrangements to have both women moved to Tucson.

I tried to find a nursing home in Tucson where Mae could live for the rest of her days.  Arlene was going to live with my husband and me for as long as we could take care of her. The homes I called were not very interested in Mae because she was bed-ridden and unresponsive. We asked Mae’s doctor in Greenwich if she would be eligible for hospice care, and the doctor told us yes, she definitely would be.  On August 1, I found the telephone number for Casa de la Luz Hospice via an Internet search.  The first person I talked to was Sandy. She immediately asked pertinent questions and started contacting the nursing home in Connecticut and Mae’s doctor. I then talked to Bonnie at Kanmar Place (Casa’s residential hospice home), who gave us all the information we required as well as all the help and support we could possibly need. 

Within a week, on August 8, we were all in Tucson, and Mae was admitted into Kanmar Place. We were all so happy to see her there in such a beautiful setting and to know that she was received with love and professional care. Mae lived for 12 days and passed peacefully in comfort, respect and dignity. During her stay at Kanmar Place we could not have asked for better care. Every time we saw Mae she was clean, in a different color nightgown and had clean colorful sheets; nothing drab as we have all seen in hospitals and other nursing homes. Sometimes it is these little things that make a big difference. Arlene was also very happy and pleased to see her Mom in such a beautiful, caring place. Nothing was too much for any of the nurses, aides, and caregivers—they all have so much compassion. And even though it’s a hospice home, Kanmar Place is alive and happy when appropriate, not depressing or sad.

Arlene stayed with us in our home, and we decided she should sign up for home-based hospice care.  This way, she could live with us and still have the support of the Casa hospice team. On August 9, Jane, a nurse from Casa de la Luz, came to our home to assess Arlene. When Jane noticed the many medications Arlene was taking and heard Arlene still had a pain level of 8 to 9, she arranged for Arlene to be moved to Casa’s Inpatient Unit that day. There, Arlene was given a Dilaudid infusion pump and was observed for three days to get her pain down to a 1-3 level, which Arlene indicated she could live with. Dr. Kligman took great care of her.

In the next week we called on Casa de la Luz many times for deliveries of home equipment—walker, wheelchair, commode, hospital bed, etc., and also for emergencies when her pain level went up too high or when she had concerns. The responses to our requests were immediate, professional, and very satisfactory. We even let a Casa volunteer, Peggy, sit with Arlene for two hours when my husband and I went for our anniversary dinner. Our nurse Shirley was also very helpful and kind. The rest of the team: Pat, Coral, Lisa, Terry, Leslie, Fritzi, Mary, and our social worker Cynthia were also of great help to us.  We thank them very much.

On August 18 Arlene felt that it was now too much for us to help her at home because she could no longer use her legs. Even though we told her otherwise, she insisted on moving to a nursing home. We called Bonnie at Kanmar Place who told us there were no available rooms. Arlene, Rick and I felt that Kanmar was the only place Arlene should be. Bonnie then told us that Mae’s room could be the first one available. Miraculously, Mae died on August 20, so that her daughter Arlene could take her room on August 21. 

Arlene was very happy and relieved to be at Kanmar Place for the remainder of her days.  Just like Mae, she received excellent care and felt safe. Thank you to the caregivers at Kanmar. Bonnie has been kind and supportive to all of us, helping us through everything. Kathy took very good care of Arlene, making sure she never had any pain and was comfortable at all times. Martha, Dominga, Liz, Bella, Maria, Monica, the night nurses Linda and Gloria, and the weekend nurse Penny all were so helpful, kind, and professional. It was also an amazing experience for Arlene to have Ron give her cranial-sacral massages. The massage gave her the opportunity to relax within herself.  She also enjoyed the harp music played by a music practitioner who visits the home regularly.  Arlene died on August 27.

We will recommend Casa de la Luz Hospice to everyone needing this important end-of-life care.  Although we had to lose two loved ones in one week, we could not have had a better experience in the way we were able to say good-bye.  Thank you all so very much!

Sincerely,

Rianne Chimblo

Rick and Rianne Chimblo, family members of two Casa de la Luz patients

Friday Five

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

1. U.S. News posted a great article titled "5 Steps to a Family Caregiving Agreement" in their blog The Best Life. If you haven't picked up on it yet, we here at Casa de la Luz Hospice strive to encourage people to plan ahead, before a crisis situation happens. Creating a family caregiving agreement is just one more way for families to plan ahead and make a difficult situation a little bit smoother.

2. Have you recently lost a loved one? In addition to hospice services, we provide bereavement care for individuals grieving the loss of a loved one. Register for one of our support groups, or drop into our weekly Friday support group. Grief support groups can provide understanding as to how grief affects us and help identify coping strategies and new methods to help ourselves through the grief experience. (Note: All of our bereavement support groups are open to the public, and you do not need to have had a loved one on our service.)

3.  You're ready to start planning ahead, but you're not quite sure where or how to start? After you fill out your Five Wishes, why not make a financial inventory. Caring Connections, an NHPCO program, offers worksheets to organize your finances.

4. In recognition of this Sunday, 10 years since the World Trade Center towers were attacked, many publications are running 9/11 features, articles, etc. Here is just one of the many powerful pieces. The NY Times presents 9/11: The Reckoning, a slide show of images showing what various people kept from that day. We offer a moment of silence to remember those lost that day and in the days that have followed.

5. Sunday (or the days prior or the days after) will be a difficult day for many. The San Diego Caregiver's Blog offers strategies for coping with grief and loss during this 9/11 anniversary weekend.

The Wednesday Image: Solitary Quail

Image taken by Crystal Cannon, outside Casa de la Luz Hospice's offices


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

Honoring Veterans

Before joining the Casa de la Luz Hospice team, I can’t say I knew much about veterans (or about hospice—these weren’t topics I covered in journalism school). That said, I have spent the past several months learning about hospice and veterans through the We Honor Veterans program. 

It’s difficult for me to imagine a time when we never thanked our veterans, when people even spit on soldiers upon their return, as they did during the Vietnam era. But, as I’m quickly learning, it’s never too late to say thank you. 

The We Honor Veterans program is a partnership between the National Hospice and Palliative Care Organization and the Department of Veterans Affairs. The program encourages hospices around the country to enroll as a partner in order to increase access to hospice care for veterans, to strengthen relationships with veteran organizations, and to build a stronger model of care that recognizes the unique needs of veterans.

The early stages of the We Honor Veterans partnership focuses on veteran education, helping hospice professionals recognize the unique needs and traits of our former service members. NHPCO offers veteran-specific webinars and practical resources as training for hospice workers. I read Peace At Last, by Deborah Grassman, a hospice nurse at a Florida VA Medical Center, and gained an incredible amount of knowledge, not only about recognizing psychosocial issues in veterans, but also in how to help a veteran at the end of life resolve his/her war-related issues. Through positive, proactive education, hospice professionals can offer veterans a death with comfort and dignity.

Casa de la Luz Hospice is excited to be a Level 1 partner in this national program, and grateful for the opportunity to offer our veteran patients a peaceful death. Continue to follow our blog for updates about our We Honor Veterans activities as well as information about caring for veteran patients.

Visit the We Honor Veterans website to learn more about the program. 

By Carrie Bui, Communications Specialist

Friday Five For Family Caregivers

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

1. We work with family caregivers on a daily basis, striving to provide superior care to patients and families. Especially in Arizona, we find that many of our elderly patients moved here from elsewhere, and some, if not all, of their children live in other cities and states. It's a difficult situation, and that's why we were glad to see U.S. News and World Report's article this week, "For Many Americans, Caregiving a Long-Distance Burden." We hope that more attention will lead to more resources for this population.


2. Could you use some help finding local community resources that offer programs and assistance for the elderly and their family caregivers? Living with Serious Illness offers community programs listings on topics such as elder abuse, caregiver resources, and local nutrition programs.


3. The family caregiver role is one a lot of people are thrust into, often with little knowledge. Suddenly, they're being confronted by how to physically care for a loved one and how to negotiate with doctors and insurance, all the while trying to balance their personal needs, such as other family members and work. It's a lot of stress, but luckily, there are resources available to assist. This article on "Navigating the Healthcare Maze" from Family Caregiving 101 offers a list of things you should know when it comes to insurance, doctors, and patient rights.


4. One of the most common misconceptions about hospice is it's a service that is only there for you in the last days and weeks of life. The Medicare Hospice Benefit guidelines say that hospice care can be provided to patients as long as a physician believes they have six months or less to live. This video from the Hospice Foundation of America explains how one woman learned hospice can be called in sooner rather than later.


5. Caring for veteran patients facing the end of life is sometimes a very different experience than caring for a civilian patient. Veterans can return from war with significant emotional, physical, and mental distress, and these issues, even if dealt with years ago, can return to haunt the patient at the end of life. Learn more about the issues facing specific veteran populations through materials provided by NHPCO's We Honor Veterans program.