Some of you know I work part-time at Stanford. We have another
wonderful person helping us with our atypical parkinsonism and
Parkinson’s caregiver symposium (to be held on July 12th). Lauren Stroshane is an RN and recently did a rotation with the San Francisco VA’s Parkinson’s Center. She has a family member with Parkinson’s. I don’t think she knows very much about the disorders in our Brain Support Network group but I am sure she’s interested in learning.
Last week, Lauren attended a talk by Chaplain Bruce Feldstein at the
Avenidas Rose Kleiner Center in Mountain View. Turns out that the
chaplain was also an ER doctor for many years. Since most of us
aren’t able to attend such events, Lauren attended and is sharing some notes from the talk.
Now, on to Lauren’s notes….
Robin
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Coping with End of Life Issues
A talk by Chaplain Bruce D. Feldstein, MD on 5-29-2014
Avenidas Rose Kleiner Center in Mountain View
Notes by Lauren Stroshane, RN
Dr. Feldstein worked as an ER doctor for many years, including relief
efforts abroad, until an injury made that line of work impractical. He
then became a chaplain.
Lauren’s note: The structure of the workshop was somewhat loose and conversational, not as linear as presented here.
Key relationships for end of life care:
1) self
2) soul friend — could be a close friend or a passing stranger like a
bartender with whom one briefly connects
3) professionals — MDs, RNs, LCSWs, others, especially therapists
4) “colleagues” — peers who have been there (in this case, those who
have taken care of a dying loved one)
5) meditation / prayer
Issues brought up by workshop attendees included:
– fear of the unknown, the desire for a “roadmap” to illuminate what
is coming next and what to expect
– defining spirituality: an individual may identify as Jewish, like
Dr. Feldstein, or other organized religion, or may identify as
spiritual but not religious; or some may not think of themselves as
either, but still derive deep meaning from something in their lives
– “busy” — Chinese written character for “heart” & “killing”
combined. This reflects how stress, in a sense, kills our hearts!
– recommended book: Dr. Rachael Remen – “Kitchen Table Wisdom”
Changing roles
– “end of life” — end of life as we know it — even before the person
dies, there is a sense of loss at the changes that have occurred
– the importance of appreciating the laughter in the moment, even if
the overall situation is sad
– helping your loved one to still feel useful!
o Getting creative with ways to allow them to have a “job”
o Thanking them, even if what they did isn’t actually helpful
Saying goodbye to a spouse
– you never know for certain which of you is going to die first
– a critical question to ask: what do they want to say to each other
before they go?
– presence of family at the bedside can be “a kind of medicine that
doesn’t come in an IV”
Whether to be present when your loved one dies, or not?
– the timing of death can be quite unpredictable
– for the caregiver, some feel strongly that they want to be there for
death, but others do not
– sometimes people wait to let go until they are alone; Dr. Feldstein
stayed with his father for hours and hours while he was dying, but his
father only passed when Dr. Feldstein left for a moment to use the
bathroom!
Coming to terms with death
– death not as a failure of life but as the fulfillment of a promise
that was made when you were born: everyone dies
– importance of detoxifying death
– recommended book for children: “The Fall of Freddie the Leaf”
What is (-) about caring for a dying loved one?
Frustration
Anger
FEAR
Confusion
Sadness
Anxiety
Helplessness
Denial
Guilt
Trapped
Alone
Empty
Fatigue
What is (+)?
Laughter
positive memories
expanded community
More time present with the person
LOVE
Gratitude
Creativity
Mindfulness
What sustains you?
– community
– love
– insight/understanding
Blessing yourself and others: Dr. Feldstein had us turn to the person
next to us and give the following blessings:
– “What I hope for you is?”
– “What I wish for you is?”
– “What I admire about you is?”