Category Archives: Caregiving – General

A short interview with the head of the American Hospice Foundation was in this Tuesday’s New York Times.  Naomi Naierman believes:  “You have to become a very savvy consumer about what is likely to be the most important health care decision you make in your life.”

To that end, Ms. Naierman offers some questions that she’d recommend people ask each hospice agency being interviewed:

* How long have you been in operation?

*  What can you tell me about your staff’s response time should I need your services on the weekend or on evenings? How long will I have to wait in an urgent situation?

* Is it your practice to keep a nurse or another clinician in the home when a patient is actively dying?  Does the family get support? Do you see the patient through death?

[Robin’s note:  Not all families want “continuous care,” but I agree with the premise that it should be available to those families who want it.]

* Do you have an inpatient facility, in case my symptoms become complicated?

* What kind of respite care do you offer, under what circumstances? Would it be a nurse or aide who comes, or a volunteer? Do you provide it once a week or twice? For how long?

We’ve turned the American Hospice Foundation’s full list of 16 questions you can ask a candidate hospice agency into a blog post here:

www.brainsupportnetwork.org/choosing-a-hospice-16-questions-to-ask/

Note that the American Hospice Foundation (americanhospice.org) is closing its doors at the end of June 2014 so check out their website
now to gather useful info.

Here’s a link to the New York Times article:

newoldage.blogs.nytimes.com/2014/06/17/how-to-choose-a-hospice/

How to Choose a Hospice
The New Old Age: Caring and Coping
The New York Times
By Paula Span
June 17, 2014 1:43 pm

A final note:  Lots of people don’t know that you can change hospice agencies.  If the agency you initially selected doesn’t work out, consider changing to a different agency.  Asking at a support group meeting is a good place to get the low-down on hospice agencies in particular geographic area.  If you can’t attend the BSN support group meeting in San Mateo, ask a Parkinson’s or Alzheimer’s support group leader in your area, ask friends and neighbors, or ask at a senior center or place of worship near you.

Robin

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

——————————————————————————–

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?”