Category: Care Partners News

A Very Long Goodbye

Sharon Graugnard-Fall
April 2017

Dementia is all around us – but not something we prepare or plan for. It may begin with a crisis or more likely an insidious yet subtle descent. The little deaths as I call them – the last time someone can drive, cook a meal, go out to dinner, live on their own or even remember their loved ones.

Dementia remains taboo, as our youth centric culture fears addressing issues of aging and dying head on. I have learned so much over the past twelve years, as my parents fell into the throws of Lewy body dementia and Alzheimers.

The first thing you learn is there is no guidebook, no 24-7 help desk and that nothing about this is going to be easy and at times it will bring you to your knees. But in my case it also gave me some of the most loving and tender moments of my life.

My mother’s onset of dementia was like flipping a light switch – July 3 she was mom and by July 5 her brain had clearly undergone a trauma for which there was no turning back. My Dad who was a saint and adored my mother – soldiered on as her caregiver – as he had been before her onset of dementia. He had sailed through open heart surgery just prior – with no pain – he said – and lovingly and devotedly took on this latest phase of caregiving. But as we learned over the next several months, Lewy body dementia is a fierce demon – causing hallucinations and bouts of anger during which someone can get hurt. When I arrived a month and half later, I could not believe how my father was surviving much less still sane. We needed help and we needed it yesterday. Half crazed at this point myself, as my mother was trying to sit on me, I tore out the yellow pages for assisted living facilities went out and sat on the side of the street and started dialing, crying and praying.

The choices are always limited and generally expensive but thankfully my parents were big savers and were able to self pay, so amazingly I found a place with an opening – and at that point you don’t ask a lot of questions. Now I know what to ask and can at least offer that to others. But at the time it was a safe place with a bed and caregivers whom we assumed knew what to do.

But mom’s dementia had other ideas. We had the most beautiful evening that night, as I was able to slip her an ativan in some applesauce which brought her temporarily back to us. We had a joyful night – mom was mom – but it would be her last night ever in that house and the last time she and my father would share a bed. The first death.

The next morning mom was unresponsive and her eyes were glazed. We called 911 and she was taken most unwillingly and painfully for all of us out of the house – and where do you take an elderly woman who is acting a bit crazy, probably has a UTI and an undiagnosed case of dementia? Well in this case it was to a psych unit in a hospital – really – and it was every bit one flew over the cuckoos nest and worse. The caregivers were heroic, the administration not. I invited the CEO to come down to the basement where the psych unit was and take a tour to see if this is where he would want his mother to be – he declined my invitation.

So began the next twelve years of learning the ways of doctors without answers, medicine with no cure, electro-convulsive therapy, anti-psychosis medications, assisted living facilities, foster homes, the blessings of Ativan and Exelon, a deep love for my mother and extraordinary bond with my father and moving them from Florida to Portland, Oregon to better manage the inevitable crises to come.

The numbers are startling. According to the World Health Organization there are 47.5 million people with dementia and 7.7 million new cases diagnosed every year. The most challenging part of this disease is that you don’t just go to a doctor for treatment – which doctor do you see? A primary care physician who is not specialized in geriatrics, a geriatrician of which there are few, a geriatric psychiatrist of which there are even fewer? And while you may get medicines to slow the progression and manage the bouts of extreme behavior – you still are facing the daunting issues of finding and most of all being able to afford the care you need. Treatment means a change in the way your parent will be living not just taking a pill. It requires hours and hours and hours of work to find day to day care, deal with the costs of care, arrange care coverage if your parent is not in a care facility, navigate family dynamics of who is and who is not able to deal with this, help care for your other parent if they are still living and living with the afflicted parent. And I can assure you insurance companies at this point are not your friend.

But while I certainly don’t have all the answers there are many lessons I learned which may help others. First, sit down literally or virtually as a family if you can and discuss the situation and start to implement a plan. Talk about finances, its hard but you need to understand what is and is not possible regarding caring for your parent in the home or outside the home. Find out what if any insurance policies exist, such as long term care. Understand what funds are available for care – either from your parents or you and your siblings. Put together a list of all important documents and where they are located. If your parents don’t have an Advance Directive – get one, they are available online and sit down with your parents and fill it out and make sure everyone knows what it says, so there are never any questions about the level of care your parent does or does not want. If your loved one is able, talk to them and the other parent about what they do and do not want should they need care outside the home, become incapacitated or unable to make decisions about their care needs. Get a Health Care Directive in place so that care decisions can be made by a responsible family member if your parents are unable to talk about their care. ER visits are dangerous and can inflict horrible pain on your parent so try to avoid them at all costs.

If you think your parent is ready for care outside of the home start visiting facilities and if you like one – get on the wait list. When you check out a facility the most important questions are about the staff – how long has the administrator been there, what are the qualifications of the nurse, what is their staff turnover rate, get the names of relatives of others who live there to talk with them about their experiences and the care of their loved one. Obviously the conditions of the facility matter but it doesn’t have the be the newest to be the best. Eat a meal – food matters – A LOT when you live in a facility. Walk around and talk to the staff and see how they interact with residents. All nursing homes, assisted living facilities and foster care homes are licensed by the state and you can look online to see if there have been any complaints filed against any facility you are interested in.

Every state is also required to have an elder care ombudsman program to answer questions about facilities, locate community services to stay in the home and provide education on residents’ rights. There are also individuals and organizations who you can hire to help you find the best facility for your parent. Their fees are generally paid by the facility not you. If you are trying to keep your parent in the home as long as possible there are services such as care.com. home instead and others that help you find private care givers for the specific tasks you need help with. All of this takes time and money and you need to have a family member in charge and able and willing to coordinate. Skype and FaceTime can be a godsend to check in from afar and you can make that a condition for anyone coming in to care for your parent that you will contact them anytime to check in. Technology is providing important advances but treatment is still hi-touch rather than hi-tech.

When my mom finally passed – 8 years into her dementia – my Dad had already been diagnosed with Alzheimers and was actually living in the same assisted living facility where my mom had been before we moved her to foster care. He was even assigned to same chair as her in the dining table by chance. Luckily he knew the facility well, as he spent 6-7 hours with her everyday when she was there and he was still able to drive to see her. The twelve years of life with one or both parents with dementia or Alzheimers was undeniably painful but also beautiful.

The best night of my life was my wedding because mom and dad were both there – physically, mentally and literally. Two weeks prior to my wedding, mom wandered out of her facility and fell down a steep embankment, smashing her eye, breaking her arm and ending up in ICU. I was ready to cancel the wedding but as she often did – mom recovered quickly and courageously.

The night of our wedding Mom, whose disease made her suspicious and delusional, was not at all certain where her nurse was taking her but when she saw me getting ready for my wedding she lit up and was truly with us that night. It was a perfect night. The most beautiful, magical and memorable moment was when my frail little mom and dashing father got up to dance – to a salsa tune no less— we all were silent at first, unsure where this might go and then everyon burst into a standing ovation. Applause for love, applause for life and applause for joy even in the face of dementia.

Care Partners Non-Profit Selected to Receive $25,000 Grant for Cancer Symptom Outcomes Study

  • One of six Tier 2 Grants funded in part by the OHSU Knight Cancer Institute Community Partnership Program
  • Objective is to generate data that supports expanding service coverage for hospice patients

HILLSBORO, OR Jan 31, 2019 – Care Partners Hospice & Palliative announced today that their project: Impact of Access to Single Fraction Radiation Therapy on Cancer Patients Enrolling in Hospice was awarded a grant supported by the Community Partnership Program.  Single fraction radiation is included in standard of care for patients enrolled in a palliative benefit, but is not currently available to hospice patients without revoking enrollment.  This novel effort to document single fraction radiation outcomes in people with advanced illness will evaluate impact on daily functioning, quality of life, and pain management including need for opioid pain medications.

Care Partners CEO Andy Kyler commented: “We are honored to receive this grant, which we hope will show the benefit of palliative radiation in patients with advanced cancer.  Patients enrolled on our hospice will have access to single fraction radiation and associated medical transportation at no cost.  As a non-profit founded over 35 years ago to care for people with cancer, we have expanded our services but continue to focus resources on this complex, high-need population and their families.”

Timur Mitin, MD, Radiation Oncologist who serves as Medical Director of the Tuality/OHSU Cancer Center added: “It is novel for hospice patients to have an opportunity to participate in a clinical study, particularly one that includes several important near-term outcomes.  We appreciate Care Partners’ interest in collaborating with us on this research, and we have redesigned our clinic flow so that hospice patients can be evaluated and treated on the same day, within a period of a few hours, to make the process as patient-centered as possible. ”

For medically eligible patients on service with Care Partners who choose to enroll in the study, single fraction radiation will be provided primarily by Tuality/OHSU Cancer Center.  Outcomes will be documented by Care Partners nursing staff.  The study is planned to start at the end of the first quarter, and will be offered in Care Partners’ five county service area.  Comparing outcomes of those who elect treatment with those who do not will generate new information to help future patients.  If the study meets its objective of demonstrating benefit in the hospice population, the data will be shared with payers, with the goal of adding palliative radiation to the covered hospice benefit.

About Care Partners

Care Partners offers both palliative care and “open access” hospice, with specialized options for cancer patients such as image-guided fluid removal and proprietary kits for managing specific symptoms.  For over 35 years, their non-profit mission has been to provide “Exceptional Care, without Exception”.  Care Partners is Medicare-certified and accredited by the Oregon Hospice & Palliative Care Association, and were chosen by their employees for the 5th year as one of the 100 Best Non-Profits to Work For.  Care Partners is a founding member of the Oregon Non-Profit Hospice Alliance (ONHA), which includes community-based organizations across the state working together to bring the best supportive care to all Oregonians.

For more information, please visit www.carepartnersor.org

Media Contact: Andy Kyler, RN, CEO: andy.kyler@carepartnersor.org

Four Oregon Community Hospices Join Forces in the Oregon Non-Profit Hospice Alliance

  • Innovative cooperative model is being implemented for the first time in Oregon
  • Four founding members serve about half of all Oregon counties: Care Partners Hospice & Palliative, Lumina Hospice & Palliative Care, Hospice of Redmond & Klamath Hospice

HILLSBORO, OR Jan 30, 2019 – The Oregon Non-profit Hospice Alliance (ONHA) is announcing its debut as an organization that will sustain and grow community-based hospice agencies in support of seriously ill Oregonians and their families.  Member agencies have been operating in their respective service areas for more than 30 years, and embody the original hospice movement’s dedication to put people above profits.

“Being part of ONHA means we can do even more for our communities”, said ONHA CEO Kelly Beard.  “Alliance members are sharing best practices and working together on innovations to support exceptional community-based hospice and palliative care.”

ONHA is patterned after successful non-profit alliances in other states.  Ohio’s Hospice, one of ONHA’s models, began in 2013 with three affiliates and has since tripled in size to nine, in addition to entering into joint ventures and partnerships with other community organizations.

Andy Kyler, CEO of Care Partners, commented: “ONHA members are proud to put collaboration ahead of competition to ensure that the benefits of non-profit care are accessible to all Oregonians”.

ONHA affiliates will continue to offer direct care services and raise funds for their local communities.  The alliance will accept donations to promote the benefits of non-profit hospice statewide.

ONHA’s member services include:

  • Peer quality benchmarking
  • Best-practice implementation
  • Shared efficiencies and economies of scale
  • Development of programs and outcome measures for payer contracting

“It’s really simple: our members provide more care for every dollar spent” added ONHA Board Chair Ilene Kleinsorge.  “We don’t have profit targets set by a financial executive in another state.  Our boards come from the communities we serve and give our agencies the latitude to do what’s best to support people through the end-of-life process”.

About ONHA:  ONHA is a registered Oregon non-profit, representing non-profit hospices state-wide who are collaborating to achieve mutually-assured success.  ONHA’s CEO works with a board of directors composed of each affiliate’s Executive Director and one board member, to ensure equal representation among members.

Media Contact: Kelly Beard, CEO, Kelly.beard@onhanetwork.org, 503-213-1095

Bucket Lists

“Bucket Lists” are a hot trend these days – as a headline for countless travel articles online and in magazines.  The phrase originally referred to a few special things people wanted to accomplish before they died.  Now it has been co-opted as an endless compilation of far-flung travel destinations and exotic activities (underwater cave diving, anyone?) whose checking off is a competitive activity – who can do the most, and of course post the photos on Facebook or Instagram.  We’d like to remind people that those nearing death actually get comfort and joy from much simpler things, like visiting a beautiful garden, getting together with friends, or a last horseback ride.  Life is not about who dies with the most “toys” or passport stamps.  Find what is important to you and do it – not to impress others, but to bring lasting happiness to you and those you care about.

Equal Access

If you have a few minutes to read this article: https://splinternews.com/how-to-not-die-in-america-1822555151 (it’s a few pages long) – it is a worthwhile time investment that highlights the healthcare disparities in the employer-driven US insurance market.  As more people, both younger and older, find themselves self-employed they are at risk for bankruptcy if they become seriously ill.  Being hospitalized and intubated in the ICU for a bad case of the flu might not kill you, but could wipe out your savings.  There is no fairness in a system that charges an accountant working in a temp agency tens of thousands of dollars for a hospital stay, while an accountant who is a full time employee pays a maximum of $5,000 out of pocket for the same services and procedures (or better ones, depending on their plan’s affiliations).

Hospice care is the only part of our healthcare system where everyone has access to the same support and services regardless of insurance plan.  Everyone gets home visits from RNs, aides, social workers, chaplains and volunteers.  At Care Partners, an RN will come every day if your condition requires.  Our social workers help with a wide variety of non-medical needs, from legal documents to family dinners out to arranging travel.  Whether wealthy or indigent, you will get the best care we have to offer.  Hopefully one day the same will be true for the rest of healthcare in America.

Staff Reflection – Sheryl

Five months ago, I moved from my hometown of Chicago, IL to the Pacific Northwest to begin an AmeriCorps year of service through Jesuit Volunteer Corps Northwest, my first full-time position after graduating from the University of Notre Dame last May. With the help of gut instincts and a strong support system, I had committed to spending one year serving as the Immigrant Community Outreach Coordinator at Care Partners Hospice & Palliative Care, a community-based non-profit located just outside of Portland, Oregon. I was to reside with four other Jesuit Volunteers (JVs), learning together how to live out the program’s core values: community, social & ecological justice, spirituality/reflection and simple living. I will admit that although I had recited my post-graduate plans dozens of times since committing, I had little conception of what my new, long-winded title really meant—nor any idea just how much this year of hospice work would bring me life.

Considering that I am now nearly halfway through my experience and that we are entering a new year, it is only natural that I have spent much of the past few weeks reflecting on my experience here. Most of this reflection, though, happened from across the world, in a small town called Kurumalloor in the state of Kerala, India. Approximately three weeks ago, I learned that my maternal grandmother, who lived in my mother’s childhood home in South India for most of her life, had passed away. Having spent the past five months engrossed in the work of accompanying the dying, I have noticed a few things, and it was this very learning which prompted me to immediately board a flight to Kerala, India, to be with my family. I knew there was nothing more important.

Hospice taught me to pay attention to the complex thoughts and feelings that arise as we grieve a loss. I can see that grief is not linear, that there are no clear-cut stages. In fact, I have come to know that nothing about death is clear-cut except that it will happen to each of us. Moreover, I have learned that encountering the death of our loved ones changes us. I can now embrace this; I allowed myself to feel moved by the experience of supporting my mother. I recognized it as integral to my developing understanding of myself as an adult daughter, one who can hold her parents, in addition to them holding her.

My time at Care Partners has given me the gift of listening to the wisdom of those close to death. My observations have taught me that death is as sacred as birth, that end-of-life work involves the family as well as the patient, that hospice is about living well in the days remaining more than dying itself, that in this healthcare field compassion and socio-emotional support blend with medical, nursing and social work practice in profound ways, and ways which help the patient feel like a person again. Most of all, my time in hospice has reminded me that we are all human beings—that we exist with limits, but that we can live with abundance, no matter our circumstances. As a hospice volunteer, I have sat with people who sing and dance with more life than even my twenty-two year old body can, who contain stories as unique as snowflakes, and who still have the need to be heard, to be seen, to be loved. In watching and working with families, I have noticed that while nothing can prevent grief, there is healing in the acceptance that your loved one lived until the very end. There is comfort in realizing that if she or he met the process with acceptance, maybe you could, too.

I am grateful for the opportunity to engage with such meaningful work at my young age, and I recognize that the lessons I am learning here in hospice will only be reiterated as I myself grow, age and, eventually, die, hopefully with the abundance of love and support I have now witnessed surrounding many of my patients and my own grandmother. From the beginning of human history and from Oregon all the way to Kerala, death remains a most sacred and human thing.

Not All Hospices Are the Same

A recent article in the New York Times (“This was not the good death we were promised” published on 1/7/18) highlighted once again that not all hospices are the same in their prioritization of patient and family needs.  Glossy brochures and service “extras” don’t substitute for being able to count on a highly trained healthcare professional to respond in times of crisis – which can be at any hour of the day or night.  Cancer patients in particular have a less predictable disease course, and the potential for unanticipated symptoms arising in their final weeks.

Care Partners prides itself on having a nurse on-call 24 hours a day, 7 days a week.  If needed, one of our physicians will also evaluate the situation and recommend a course of action – even at 3 am.  We often visit patients more than once a week (potentially multiple times in one day if required) and we are in contact with the home at least four times in the first 48 hours after admission. There is never a time, including holidays, when our phone is not answered.  We always do advance planning and coaching with our families, making sure that an adequate supply of medications is in the home, as well as specialty “kits” we have created for emergencies like seizures.

Hospice has the potential to help patients through a good death experience (see another New York Times article, “One last visit to see my patient” published on 9/25/17), but Medicare payment reforms are needed to insure that funds are available to cover services for patients with high needs.  Currently hospice is the only type of care with flat reimbursement unrelated to patient acuity.  As a result, for-profit agencies have fewer incentives to care for medically-complex patients with short stays, while non-profits whose mission is to provide exceptional care without exception are under pressure for incurring costs far above the daily rate they are paid.

Touch a Life for the Holidays

Do you know someone who is spending the holidays alone for the first time?  Or perhaps not for the first time?  More than 20% of US adults over age 55 live alone, and 60% of nursing home residents have no regular visitors. Make the decision today to help!  Call and offer to stop by for a visit, or if the person is mobile, meet somewhere within walking distance during the day (10 am-2 pm may be the best window).  Find out what kinds of activities they would enjoy, choose one, and block time on your calendar.  Then do some online research and find out what other services are available in the area, and mention a few might be of interest.  Drop by with a small edible or floral gift on Christmas morning, and check in the week after during the “post-holiday letdown.”  Start a new tradition – and remember that doing something for others does as much or more for the giver as for the recipient!

James McGaha Nominated to Hospice Dream Team 2017!

The Oregon Hospice Association has named Care Partners hospice aide James McGaha to its annual Hospice and Palliative Care Dream Team, which honors individuals who exemplify the best in quality hospice and palliative care.

Pictured right: Care Partners patient and U.S. Marine Corps Veteran Dave Steel with his Hospice Aide, James.

James entered college with his sights set on becoming a registered nurse, but his musical talent and love for rock and roll took him down a slightly different path. While pursuing a music career in the evenings, he spent his days as a certified nursing assistant at Martha and Mary Ministries, an adult foster home for dying patients in Southeast Portland. At Martha and Mary, James quickly became a leader among his peers, helping to ensure quality patient care and a smoothly operating facility.

James transitioned to Care Partners in 2015, where he has since established himself as an invaluable asset. He is a strong advocate for the hospice aide team and has taken an active role in looking for ways to improve the daily lives of his colleagues. More importantly, he has continued to maintain a special connection to his clients. His calm and composed demeanor sets patients and their families at ease, and his continuous demonstration of compassion positively touches the entire Care Partners organization.

As a person of many talents and interests, James’ journey is just beginning. Although we don’t know exactly where it will take him, we do know that his attentive, knowledgeable and compassionate care has been an appreciated addition to the Care Partners team. We thank him for all of his service and hope that he continues to play an important role in his patients’ lives for many years to come.

2017 Care to Dance Sponsorship Opportunities

DOWNLOAD the Sponsorship Form

Underwriting Sponsorships

MAJOR Underwriting Sponsor: $3500

  • Recognized as a Major Underwriter of the event in all promotional materials
  • logo on promotional flyers, website, social media postings
  • On-site announcements

PARTNER Underwriting Sponsorship: $1,500

  • Recognized as a Partner Underwriter of the event
  • logo on promotional flyers, website, social media postings
  • On-site announcements

SUPPORTING Underwriting Sponsorship: $500

  • logo on promotional flyers, website, social media postings

On-Site Sponsorships

MUSIC Sponsor Package: $1,500

  • Music area signage, logo on event sign and promotional materials
  • Intro prior to music performance
  • On site tent (10×10) (includes tent/table/chairs)

DANCE Lesson Sponsor Package: $1,000

  • Dance area signage, logo on event sign and promotional materials
  • Intro prior to lessons, On site space (10×10)

SUPPORT Sponsor Package: $250

  • Logo on event sign, promotional materials, onsite mentions
  • On site space only (10×10) (no tent provided)

Local Artisan Booth Vendor – $50 (up to 30 available)

  • On-site space (10×10)
  • (if we provide tent/table/2 chairs – $80.00 additional)