Take Care of My Dog

Take care of my dog,” Barb had said as the cancer ate away at her insides.  And Zoe, our Havanese lapdog, was now my dog, my constant companion. Zoe and I had come to Barb’s favorite restaurant to plan for the “story telling” here later. Barb didn’t want a celebration of life, but we were going to spread her ashes nearby and we needed “tell stories.”  Zoe explored near my chair on the patio.

The table I chose was off to the side.  Zoe and I were the only ones there.  My food came, and the chef came to my table while we made the arrangements.  I was still eating when a couple came to a nearby table.  A friend had warned me, “It will be hard to see couples enjoying themselves.”  “It’s really nice out here,” she said to him as they sat down. Funny how you can hear everything when you don’t have someone to talk to. My face tightened as I tried to hold back the tears.  Funny too, how such an everyday conversation can grab you.  I had this urge to run.  But I had a meal to finish.

Finally, back in the privacy of my car, I relaxed a little. Zoe hopped over to the passenger seat—Barb’s seat. Only no warm lap to nestle into now.

Over the weeks since her death, sneaker waves had come from nowhere to pull me into the cold ocean of grief. Now, a gentler sneaker wave warmed my face. It pulled it into a slight smile, then into a chuckle.  “I’m gonna write a book,” I told Zoe. “I’ll call it:  When ‘we’ went out to eat means ‘me and my dawg’.”

Memorial Ceremonies and Achieving Closure in the Time of COVID Infection

Before my mother died, she expressed a desire to be cremated and to have her cremated remains placed close to my fathers at a family friend’s ranch in Eastern Oregon. Mom died in January, when there were 4 ft of snow on the ground at the ranch. The private road getting up to the spot was virtually impassible which made it impossible to carry out her wish at that time. We created a little home Chapel where Mom’s cremated remains could be held in honor until it was possible to bury her. Mom stayed with us for about 6 months, until my brother and sister-in-law could come from Germany to be with us when we could put her to rest next to our father. 


During this time of social distancing our typical rituals for honoring our loved may not be available to us. What can individuals and families who have lost someone do to acknowledge the end of a life, when travel restrictions are in force and group gatherings have been cancelled?  It is important to define an alternative than can take place now, even though plans for a larger event may be scheduled for a future time – because when a leave-taking ritual is delayed, it can lose its therapeutic/cathartic value.


People can share stories, listen to music that was a favorite of the deceased, perhaps sing or maybe just sit in silence, depending on the family tradition. Or sit in a circle around a lighted candle, symbolizing the light and life that their loved one brought to them. People can do this on their own if a small group is not possible, in the peace and quiet of home or out in nature. Another option is to write a letter to their loved one, read it out loud and then burn it. The idea is to create a kind of “threshold” experience, which marks the transition of one kind of relationship with a loved one to a new one, where the deceased is no longer physically present, but remains resident in the memories and hearts of all who mourn her or his passing.


All of these things help us to make meaning, purpose and connection at these critical times.  Those of us who have the privilege of caring for people at the end of life need to help their survivors, lost in the wilderness of grief, to do three things: 1) to acknowledge that someone we know and love has died; 2) to remember and celebrate that person’s life within the context of her or his commitments. (That means more than just reciting a list of activities or hobbies. For example, Uncle Jed may have loved to go fishing, but it’s also important to get a sense of why Uncle Jed loved it so much and what we can take from his appreciation); 3) to commend our loved one to whatever may be next. For some, it can be a commendation to God. For others it may be accommodation to nature, to the universe or perhaps simply to the ground or the air.  Whatever we do, these three movements, somewhat like a symphony, help us enter upon the journey to the “New Normal” which will last the rest of our lives, until we can rejoin our loved one in another realm.

Dementia is a Terminal Condition

Many people think of dementia as a memory problem, and therefore something that a person can live with indefinitely.  In fact dementia is a degenerative disease that eventually stops brain function, just like heart failure or lung disease.  If a person with dementia does not die from an infection or from no longer eating & drinking, eventually their brains begin to misfire, causing seizures, and then no longer signal their lungs to breathe.  While they are no longer aware by this time, it is terribly difficult for the family to witness.  This is why it is so important for family members to agree in advance on matters like treating an infection, or forcibly feeding someone who is no longer interested in food.  “Letting nature take its course” rather than intervening with treatments is the kindest approach.  Pain and other symptoms can be managed with hospice care so the person is not suffering.

 

A daughter wrote about her mother’s death from Alzheimer’s dementia, and her post has helped many people come to terms with what to expect.

 

How A Doctor Managed His Father’s Care

As we start 2020, it is worth remembering that technology, while always evolving, can’t solve everything.  Even physicians who are almost automatically put on the “more is better” track find that this may not be the best approach. 

The Atlantic recently published a short article about how a physician managed his physician father’s end of life care.  It’s a good read!

 

 

 

 

Grief

Our last posting of 2019 is about grief.  For many people who have lost someone important to them (and actually, that’s most of us!) this time of year can be particularly challenging.  A recent article in the Washington Post’s Bold School newsletter does a great job of describing one person’s journey and coping mechanisms.  Check it out at the link here.

We wish all our families and readers the gift of peace in the coming year.

Tips for Holiday Interactions with Family Members who are Living with Dementia

Many people whose mother, father or spouse live in a memory community are wondering whether they should visit if their family member no longer recognizes them, or if they become upset during or at the end of the visit. Our recommendation is unequivocally YES. Some simple tips can help make the most of this time for everyone.

Make sure you understand where in time your family member currently “lives”, and structure your interaction accordingly. Bring objects that relate to that time period to help focus conversations or elicit long-term memories. Do not correct their assumptions and beliefs. For the duration of the visit, their reality is all that matters.

Speak slowly and keep the tone of your voice low and gentle. If there is too much commotion in a common area, find a quiet place to sit. People with dementia are easily overwhelmed by stimuli that others are able to screen out and put into context.

Remember that a pleasant interaction remains in someone’s “emotional memory” although their factual memory may be gone. Tell someone how good it is to see them, and how much you are enjoying your time together. If touch is appropriate, hug them or hold their hand. When the time of the visit draws to a close, do not say “Goodbye”. Instead make sure they are transitioned to another activity and/or caregiver and tell them you’ll be back “in a little while” or “soon”. If necessary come up with a reason, even something mundane like using the restroom. With appropriate distraction, departure need not be distressing.

Cancer Symptom Outcome Study Now Enrolling

– Study partially funded by a $25,000 grant from the OHSU Knight Cancer Institute Community Partnership Program
– Patients eligible for palliative radiation will be treated at Compass Oncology’s Radiation Center in the Rose Quarter or at Tuality Healthcare’s Radiation Oncology Center in Hillsboro

Hillsboro, Oregon, Nov. 21, 2019—Care Partners announced today that their project: Impact of Access to Single Fraction Radiation Therapy on Cancer Patients Enrolling in Hospice received Institutional Review Board (IRB) approval to initiate patient recruitment and is now enrolling. Single fraction radiation is widely available, but it is not covered under the hospice benefit. People on hospice must temporarily revoke enrollment in order to be treated, which poses access challenges. This study will provide treatment and transportation funding for eligible cancer patients with bone metastases who are enrolled on Care Partners hospice service and elect to participate. Outcomes to be tracked include impact on psychosocial factors as well as physical symptoms such as bone pain.

Care Partners CEO Andy Kyler commented: “We very pleased that patients enrolled on our hospice will have access to single fraction radiation at their choice of location – Portland/Rose Quarter or Hillsboro. Although medical transportation is provided, we want to minimize the time patients and caregivers spend traveling for the combined evaluation and treatment visit. The quality of care available at both Compass and Tuality radiation oncology is outstanding, and we are proud to partner with them on this important study. Our nursing staff has been trained and is ready to engage in patient management and data collection, overseen by our Medical Director Dr. Gerald Gibbs, a board-certified hematology/oncology specialist.”

About Care Partners
Care Partners offers both Palliative Care and “Focused Care” hospice programs with specialized management options available for the most common hospice diagnoses: cancer, heart failure, chronic lung disease and dementia. Since 1982, their nonprofit mission has been to provide “Exceptional Care, without Exception”. Care Partners is Medicare-certified and accredited by the Oregon Hospice & Palliative Care Association, and was chosen by their employees for the 7th year as one of the 100 Best Non-Profits to Work For in Oregon. They are founding members 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, (503)619-2621

Supporting Care Partners

This is the time of year when mailboxes and email boxes are filling up with appeals from numerous deserving charities.  Care Partners staff, board, volunteers, and donors are generous with their time and dollars for many nonprofits.  At the same time, we have a special place in our hearts (and in our allocations) for Care Partners.  Why is that?

There is no more stressful and difficult part of life – for most people – than when they and their family find out their time on earth is drawing to a close.  Ironically, it is even harder for spouses and children than it is for the person who is ill.  It is a universal experience, yet so often people feel alone.  In industrialized societies like ours, time and empathy can be in short supply.  While we are a healthcare agency that provides excellent care of the physical person, our impact is as much or more on the intangible mental and spiritual side – regardless of whether someone attends church or has been part of social support groups.  We always strive to bring peace as well as comfort.

So even as major events on the national and world stage vie for attention and funding, it is worth remembering the importance of supporting your community through Care Partners services as they go through these challenging transitions.  And one day, the person who needs that support will be us.

Asian Health and Service Center

This week, we want to highlight one of our community partners, the Asian Health and Service Center.

In October we were pleased to be part of the launch of their new Asian Cancer Resource & Support Center. Dr. Erik Szeto, board chair, spoke with a panel of 8 guests about the journey of providing culturally-appropriate and language-specific cancer support.
AHSC Event

The panel, pictured, were:

  • Jeff Hetherington, former CEO, Family Care
  • Niyati Desai, Knight Cancer Institute
  • Tamara Tellis, American Cancer Society
  • Winnie Yan, cancer survivor
  • Paula Crone, DO, Dean, Western University
  • Erin Salinas, MD, Compass Oncology
  • Mark Whiteford, MD, Oregon Clinic
  • Nick Fish, city commissioner and cancer survivor

As a palliative and hospice services provider, we are committed to working with immigrant community organizations like AHSC to enhance awareness, education and access to serious illness care. In addition, we understand the importance of presenting care in a culturally-sensitive context. We are excited to develop our partnership in cancer care as we move into 2020.

This is Our New Weekly Post!

Welcome to the new Care Partners website and weekly blog.  We’d like to start off with a wonderful article by Dr. Atul Gawande.  It was written for the New Yorker in 2010, but it’s still completely relevant today.

Yes, it’s a long read – but don’t miss his discussion of how hospice care has been shown to extend the life of some patients for weeks to months vs. active treatment – and to have similar outcomes as active treatment for many others.  It was a surprise to him because he assumed, like most people, that hospice is all about using opioids to ease people into death.  While pain control is important for quality of life, it is far from the only management tool available.  As a non-profit hospice and palliative provider, we’ve developed our diagnosis-specific programs to give people both active support and comfort, even though it costs more and requires more staff training.

A key point of his article is that everyone needs to have an Advance Healthcare Directive – even those in “perfect health”.  Thinking about your wishes, discussing them with family and friends, and writing them down can seem like a downer, but it doesn’t have to be!  Have a party with the beverages of your choice and share ideas and opinions about the inevitable that awaits all of us.  Or find a public “death café” event if that is more your style.  Either way, people say that the peace of mind they have after they’re done makes the whole effort worthwhile.  And that doesn’t even include the benefits for family members who would otherwise be pressured and conflicted about what to do, at a time when they are under huge stress.  So don’t wait!  The end of the year is a great time to connect and to put something in place for a smooth start to 2020