Category Archives: hospice

Part Two: “Let’s Talk Turkey” Here’s a real life example

Giving Thanks for My Father’s Death
By Rev. Rosemary Lloyd, 11/22/2016

[Permission to publish]

This Thursday, there will be an empty chair at the table for our family Thanksgiving gathering. My brothers and I made plans months ago to come from the many corners of our busy lives to be together for what we suspected would be my father’s final Thanksgiving on earth. But he won’t be with us. He died October 16, 2016.

It’s okay.

Don’t misunderstand: I’m sad; I will miss him forever.
And I am grateful for his death.

My father was 95 in August. For more than two years, we witnessed the mental diminishment that came with the unforgiving progression of late-onset dementia. Ultimately, the man who was a navigator during World War II—who could fly through night skies with stars as his guides—would say, “I’m lost. Where am I? Where are we going?” Untethered from the circadian rhythms of the household, he would wander restlessly at night and doze on and off through the day.

It became more and more difficult to understand what made him comfortable or uncomfortable. What he would want to eat instead of push away. Whether he would agree to take a walk or get dressed or simply refuse.
So, when he died quietly, sitting in his favorite chair, waiting to be called for dinner, I was, of course, sad. And grateful.

Grateful that his death was what so many of us dream for ourselves: It was peaceful, seemingly without pain, at home, near his beloved wife, the smells of his favorite dinner wafting from the kitchen. We are grateful for the mercy that he still knew his bride of 63 years, and recognized his children and grandchildren. The twinkle is his eyes still ignited when he saw a baby or a pretty woman. And he was still saying, “Thank you,” “I’m sorry,” and “I love you.”

I am so grateful that we had some crucial conversations along the way. Dad convened his adult children after Thanksgiving dinner some years ago to explain his finances to us all. He designated who was to have Power of Attorney for financial matters, who would be executors of his estate, and who his back-up health care agent was, after our mom.

Early last year, having outlived the battery in the pacemaker/defibrillator that slept under his skin, he opted to have just the pacemaker replaced, saying he didn’t want his heart “shocked” if it was ready to stop. We gently pushed the conversation to the next level: What if your heart stops beating in the hospital or at home? Do you want us to attempt CPR to try to restart your heart? “No,” he answered softly. “I don’t want that.”

He asked his doctor for a DNR order and it was placed on the refrigerator at home. I am so grateful for his courage, and for my mother’s and brothers’ tender compassion that allowed us to talk openly. And for the doctor’s humanity in receiving Dad’s request. Those conversations were a gift that gave everyone peace of mind on October 16th.

Though he “graduated” from hospice in August, I am grateful for the dedicated and compassionate people who supported my parents for six months. If you ask her, my mother will tell you how “Wonderful!” were the world-expanding visits from the chaplain, and social worker, and nurse—for both of them.

I am grateful for the many years that my father was our guiding star, and for the gift of words that expressed his love for us and his faith in a God who would be his eternal rest. I am grateful for the many family, friends, and strangers-to-me who expressed their condolences, sent food, came to the house and the funeral parlor, to the church and the graveside. I am grateful for the co-workers who allowed me the time to be with my family and who understand that grief isn’t over just because the funeral is.

As I look around the table this Thanksgiving, I will, no doubt, see eyes that twinkle like my dad’s, and eyes that sparkle with brimming tears. And I will feel so much gratitude for the gift of my father’s life and his death. May his memory be a blessing for generations.

Emma's Battle of the Q's

The “Battle of the Q’s” PART ONE

Emma's Battle of the Q's

 Recognize three new acronyms: NED; MBC; + AND?

It’s easy to be an armchair quarterback, and intellectualize QUALITY of life vs QUANTITY of life until an accident or a terminal disease catapults you to the business end of a buzz saw. Don’t become complacent like I did.

I had STAGE IIIA breast cancer in 2004, after multiple surgeries, chemo and radiation. I was anxious before every six-month checkup, and after five years, the annual visits. What a relief to be told: “No Evidence of Disease (NED).” I took NED for granted. Excruciating headaches in late 2015 led to a diagnostic cervical CT scan, which identified hairline fractures in my cervical spine. A second CT scan, plus a deep needle biopsy of my Iliac crest, verified that I’d leapt over STAGE IIIB—and landed in STAGE IV cancer, which is where the bus stops. Totally blindsided, NED was replaced with a new acronym: Metastatic Breast Cancer (MBC).

Treatment plan: Ten doses of cervical radiation in December; six months of wearing hard and soft neck collars 24/7; daily Femara pills, and a monthly injection of Exgeva to strengthen my bones. June CT scan–no new tumors. While intermittent bone pain in my legs and ongoing fatigue punctuate my daily activities, now’s the time to reinforce my End of Life (EOL) discussions, i.e., My Exit Strategy that I’d designed with my website in 2013. Research on bone metastasis shows a five to ten year life expectancy, so it’s a perfect time to rev up this conversation, again.

If you were buying a car, you’d check out the dealership’s reputation, right? Why not do the same, and investigate your future EOL needs like geographically desirable hospice facilities, caskets, cemetery plots, funeral homes or cremation services, now, before you need it?

I remind my adult children that just as the citizens of Chicago were told to vote early and often, when my health goes downhill, they should use the same approach with the Hospice I have chosen. Start early and ask often: “Is my Mom ready to go into hospice yet?” Every patient will decline, and the doctors will be asked: Would you be surprised if she died in the next six months? I don’t want to be cheated out of one day! Give me hospice!

Here’s the third acronym: Allow Natural Death (AND). My directions are simple and clear. Be prepared for the time when my cancer becomes aggressive, or stops responding to treatment. If a medical crisis develops, my condition could deteriorate very quickly. Don’t panic. Keep my POLST* and Advance Directives visible. Focus on comfort care—only give me the best QUALITY of life possible. No heroics, last-ditch surgeries or attempts to prolong my life—which in reality just prolongs a patient’s suffering. DO NOT send me to the ER or the ICU. Keep me at home. Re-read my Directives. Review our state guidelines for paramedics. If I can’t breathe, don’t call 911. Never allow anyone to crack my ribs, or surgically open my airways. Stay calm. My goals have changed—I’m looking forward to my eternal life. As soon as I am Absent from the body, I’ll be present with the Lord. I’ll get there sooner if you remember AND –Allow Natural Death.

POLST*    Physician Ordered Life Sustaining Treatment. States use different terms. Find yours on this map www.polst.org

The linchpin to End of Life (EOL) planning is to stay in control. Make your personal Exit Strategy air tight. Clarify your wishes now, and keep talking about it until your family understands the blueprint you’ve outlined for them. Research demonstrates that when the family is at peace with your advance decisions, they can concentrate on mourning and remembering your legacy—which keeps you alive in their hearts and minds.

Coming soon:  PART TWO   Building your own Quality VS Quantity charts.

 

 

 

Q and A with Kara Dolce, Founder of Fighting Pretty www.fightingpretty.org

Sample box from FIGHTING PRETTY

Common Denominator for Cancer Patients (CDCP)

                 Appearance = Self Image (SI)

Elizabeth:  Speaking from personal experience, losing my hair, my eyelashes and eyebrows was one of the most devastating consequences of chemotherapy in 2004. The stress of radiation and multiple surgeries contributed to my losing 30 pounds: I looked emaciated! The American Cancer Society (ACS) sent a Reach to Recovery volunteer to share her cancer experiences, and give me a post-mastectomy Teddy Bear pillow. She urged me to attend a Look Good/Feel Better (LGFB) session held at the U S NAVY Hospital in Bethesda. A volunteer demonstrated how to work around the ravages of cancer, and sent us home with a bag of free (donated) cosmetics. http://lookgoodfeelbetter.org/

Flash-forward to September, 2015, when my former SOWER* volunteer friend, Betsy McGuirt was enrolled in home hospice care. Betsy and her husband had battled brain cancer for fourteen months. Their goal was to have as much quality time as they could, with their family and friends.

I think many of my readers know the frustration of wanting to help a friend with cancer, but don’t know what to do, particularly if you live in another location. I called ACS to schedule a “Look Good/Feel Better” program for Betsy, but they had no programs in rural North Carolina.

I don’t remember how I found www.fightingpretty.org, but as soon as I ordered her package, they sent it immediately.

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Betsy left me a tearful voice message: “You made my day!” She loved everything in the box, including the Pink Boxing Gloves which reminded her of her father’s life as a boxer. Her husband passed the gloves on to me, now that my breast cancer has metastasized to my bones. They are a constant reminder, always positioned above my desk.

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Q:  What’s been the biggest surprise since you incorporated Fighting Pretty Inc. as a 501(c)(3) non-profit organization in 2013?

A: The biggest surprise has been the impact that Fighting Pretty and our Pretty Packages have had on the women who have received them. We have received thousands of thank you letters from women who have received our Pretty Packages ranging in all ages, all types of cancer and from all over the world. Our Pretty Packages are really making an impact on women battling cancer and in some cases, continue to make an impact on their families even after their loved ones may have lost their battle with cancer.

Sample box from FIGHTING PRETTY

 The outpouring of generosity and love from friends and loved ones requesting Pretty Packages for women battling cancer, companies donating thousands of products and cosmetics, and individual donors supporting the cause has been incredible! We are so grateful for all of our supporters – big and small. Your strength gives us strength!

Q:  What’s been the most effective way to let people know about FIGHTING PRETTY ?

A: Most people are finding out about Fighting Pretty through social media and word of mouth. There are many referrals that come from women who have received Pretty Packages; however, we are working on attending more cancer walks in 2016, and partnering with even more cancer hospitals around the country to distribute literature about our programs and even donate or give away Pretty Packages to current patients getting treatment.

Q:  FIGHTING PRETTY is now three years old. Tell us those amazing statistics of how you’ve managed to help so many women!

A: Fighting Pretty started very organically. I was given a pair of mini pink boxing gloves as a symbol of strength and hope. And when I finished battling cancer, I not only sent on my boxing gloves to a newly diagnosed “fighter,” but I wanted to help all women battling cancer feel strong and beautiful, like my friends and family had done for me. I started by sending one care package to a friend. Then another package to someone else’s friend. And it got to the point where I realized I should send these to everyone, even if I don’t have a direct connection. I started a Facebook page, created a logo and the next thing I knew, I sent 11 in my first month. Then I doubled that, then tripled that, and finally reached the highest month – October – when we sent over 100 Pretty Packages. Next came a request from Australia, then France, then the Philippines. And next thing I knew, with the help of my mom, we sent over 2,500 Pretty Packages to 49 states (no one in New Mexico!) and seven countries in three years.

Because the Pretty Packages are personal, contain quality items that have been carefully procured, and are generally sent from a friend or family member, recipients of the packages absolutely love them. And because friends and family members don’t really know what to do to help their loved one who is battling cancer, they turn to us!

Q: I just asked all of my Facebook friends to “Like” the Ohio State University FIGHTING PRETTY college chapter. It is alarming how many young women are being diagnosed with breast cancer. How can we get more colleges to join this movement?

A:  As a young breast cancer survivor myself, it is alarming, but a real issue. My personal opinion, not backed by research, is that more women are aware of breast cancer now, so they are finding it younger, but living longer because of developed research. Only 15-20 years ago, not as many younger women were aware of the disease, and so they were less likely to do self breast exams, resulting in more advanced breast cancer later in life. Again, this is my personal opinion – not backed by research.

I am very passionate about spreading awareness of Fighting Pretty, but also the promotion of self breast exams.  I know that when I was 26 years old – only a few years out of college myself – the last thing I thought about was getting breast cancer. It was my grandmother’s death that triggered me to do a self breast exam, to find out I had Stage 3 breast cancer that spread to my lymph nodes. I’m happy to say at 34, after surgeries, extensive treatment, and hormone therapy, I am cancer free!

The partnership with OSU came about very organically. A student, Hope Farabee, was doing a class project and wanted to help cancer patients feel beautiful. She found us online and wanted to help. Together, we developed a 3-step pilot Fighting Pretty club: (1) Fundraise (2) Make Pretty Packages (3) Distribute to a local cancer hospital. The OSU team is starting their fundraising step this month!

Q: What’s the best way for potential cash donors or IN-KIND corporate donations to reach you?

A: Visiting our website is where you will find the most information about how to donate. We are always looking for financial donors to back our mission so we can continue to grow and spread awareness of our cause across the nation. In-kind donations help us send quality items to the women who need it most – the women who are Fighting Pretty. We have worked with really big brands like Maybelline, OPI, Revlon and Mary Kay, and smaller brands like Alima Pure and Inspyr Socks. We love making new partnerships because it not only helps us to grow our business, but it helps to spread awareness to help even more women around the world feel strong and beautiful during their cancer journey.

For cash donations, people can donate right through our website:www.fightingpretty.org or send a check to: 2645 SW Maple Lane, Portland, OR 97225. For in-kind donations, please contact us atinfo@fightingpretty.org. We are excited to hear from you!

Q: How often do you need volunteers to help build your FIGHTING PRETTY packages for mailing?

A: Right now, we are sending on average 50-75 Pretty Packages per month. So we typically only meet once every month or every other month, depending on how many Pretty Packages we have “in stock.” However, as we grow, we may be hosting more Pretty Package development events! It’s not the building of Fighting Pretty Packages that we need the most help with, it’s sourcing the materials and spreading awareness so we can help even more women battling cancer feel strong and beautiful during the toughest time of their lives.Screen Shot 2015-07-07 at 6.35.05 PM

Kara Dolce, Founder, www.fightingpretty.org

 

How The Mesothelioma Center Can Help Someone With A Terminal Diagnosis of Mesothelioma  

The value of a good support team can’t be understated when facing a terminal diagnosis. A network of supportive family, friends and health care professionals is the greatest asset someone can have when coping with a terminal disease like mesothelioma cancer.

Mesothelioma is an incurable cancer caused by exposure to asbestos. The five-year survival rate is less than 10 percent, and mesothelioma life expectancy is between 12 to 21 months. However, advancements in treatment are helping people live longer and more comfortably with the disease, and rare cases do go into remission, but the vast majority diagnosed with mesothelioma will succumb to the cancer within three years. Continue reading

I’ll Never Stop Volunteering! Need a body for medical research? Take mine!

Last year I explained that my God-given soul returns to Him, eternally, when I die, in my Blog post, My Life in Three Ice Cubes: …Whenever Death comes, as you can see, the third ice-cube (my corpse) will be a mere puddle, like the cocoon abandoned by the butterfly, or the shell discarded by a cicada.

I’ve heard other survivors declare that “Cancer is the gift that keeps on giving,” because late stage effects extend our suffering. I say organ or whole body donation is the only gift that can keep on giving. If I can’t use my body anymore, why shouldn’t someone else benefit from it? Continue reading

GUEST POST

Sue Montgomery, RN, BSN, granted me permission to link to her article, “WhenMed-Surg Nurses Care for Dying Patients” in Working Nurse magazine.

Here are some medical acronyms and terms that were new to me:

  • Med-Surg = Medical-Surgical.  This refers to a sub-specialty of nursing that cares for patients with medical and surgical needs.
  • ICU  = Intensive Care Unit
  • ATC = Around The Clock
  • PRN = As needed
  • IV = Intravenously

TUG of WAR

Tug-of-War-about-YOU

Click image to enlarge

I hope this Mind Map is legible! I am trying to show, with a few pictures, what can happen to a person who is terminally ill. The patient has had enough: “NO MORE TREATMENT. Just let me die, at home, with my family, in a calm atmosphere. Keep those Hospice folks busy–tell them I just hate pain, don’t interfere with my medications–it’s too late for me to get addicted to pain killers. Talk to me about my life, our life, and share with me how you feel about my dying. And let me talk about my feelings too. Death is inevitable, now it’s my time to go. Give me permission. Tell me you will see me later, when we meet again in Heaven. Kiss me goodbye.”