Category Archives: End of Life

Losing a Parent Comes With Tasks

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This Wall Street Journal (wsj.com) article from a couple of weeks ago is addressed to adult children but lots of the info applies to spouses and siblings as well. The many tasks that come with losing a parent are detailed — sifting through belongings, taking care of financial matters, doling out heirlooms, and documenting tax deductions if items are donated to charities.

Here’s a link to the full article: (there may be a charge to read it)

online.wsj.com/article/SB10001424052970203920204577195292564700600.html

Weekend Investor
Wall Street Journal
The Pearls Are Mine!
By Kelly Greene
February 4, 2012

Suggestions for sharing the neuropathology report

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Many families we help with brain donation arrangements share their loved one’s neuropathology report with us.  Thank you for doing this as it helps us learn too!  Plus we keep track of the clinical diagnosis and neuropathological diagnosis.  Often they are different.

We’d like to offer some suggestions of whom else you can share the report with besides Brain Support Network.

Most importantly, share the report with the diagnosing physician, who is probably a neurologist or psychiatrist.  Ask if that MD can talk with you and all family members by phone, drawing correlations between your family member’s clinical records and this neuropathology report.  Request that you be allowed to record the conversation.  Plan in advance for that conference call; prepare your list of questions.  Assign a family member or close friend to take notes.  Assist Brain Support Network by suggesting that physician send other families our way to make brain donation arrangements.

Share the report with any other physicians involved in your family member’s care — even primary care physicians.  This is how physicians can learn.  “Oh, that’s what someone with Lewy body dementia [or whatever the disorder is] behaves and appears!”  Again, suggest to those physicians that they send other families to Brain Support Network to make brain donation arrangements.

By the way, we think it’s important to share the report even with physicians who incorrectly diagnosed your family member.  Perhaps that’s most important as it’s a way the physician can learn.

I also requested that my father’s neuropathology report be placed in my personal medical record (with my primary care physician) as it is evidence of my family medical history.  Not everyone wants to do that.

Best wishes to your family and thank you again for the brain donation (as that helps us all),
Robin

 

POLST – Genl Info and 1/11/12 Lecture

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Some of you have seen the bright pink POLST form.  POLST stands for Physician Orders for Life-Sustaining Treatment.  The form is to be filled out by someone with a life-threatening illness and signed by his/her physician.  It’s ideal if the physician and patient discuss the options raised in the form.

CA POLST

You can get general info on the California version of this form and download a copy at this website:

http://www.capolst.org/

It’s available in many languages.  The form was recently revised. The latest version is dated 4/1/11.  All California care facilities have required this form for many years.

I plan to bring some to the next caregivers support group meeting on 12/4.

ADVANCE CARE PLANNING

You can find some useful information on talking about advance care planning for the Coalition for Compassionate Care of California website:

http://www.coalitionccc.org/advance-health-planning.php

On that page are many additional resources. I would like to highlight two of those:

* Five Wishes, fivewishes.org.  Many in our support group recommend using this advance care directive form.  My husband and I have purchased copies of this form for our family members, and discussed it with them.

* “Go Wish” cards.  I bought a couple of sets a year ago and have used them for advance care planning discussions with family members.  Let me know if you’d like to borrow a set prior to the next group meeting; I can bring a set with me if I have some advance warning!

POLST THEORY

The POLST form was developed at the Oregon Health & Science University. You can read about the POLST “paradigm” here along with a map of what states have POLST programs:

http://www.ohsu.edu/polst/

LECTURE NEXT YEAR

At the Palo Alto Parkinson’s Support Group meeting on January 11, 2012 (next year), a geriatrician at the Palo Alto Medical Clinic will be speaking about the theory behind the POLST.  An RN will be discussing how to fill out the form.  This meeting is held at Avenidas, the senior center in downtown Palo Alto, from 2 to 3:30pm.  No RSVP is required.  Anyone is welcome to attend.

“Deciding to Die, Then Shown the Door” (NYT)

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This is quite a story in the New York Times about a couple deciding not to eat/drink any more, and then being forced to leave their care facility:

newoldage.blogs.nytimes.com/2011/08/24/deciding-to-die-then-shown-the-door/

The New Old Age: Caring and Coping
Deciding to Die, Then Shown the Door
The New York Times
By Paula Span
August 24, 2011, 1:59 PM

In our local support group, we’ve had many people who have decided to stop eating and drinking.  I only know of one case where this decision was treated as a “problem.”  Recently, a woman who had progressive supranuclear palsy (PSP) for several years wanted to stop eating/drinking.  The woman was on hospice at this time.  Her daughter talked to the hospice agency about her mother’s wishes.  The hospice agency said that they could not discuss this topic with either the mother or the daughter.  So the daughter had to learn about dying in this manner on her own, and had to rely on others for support during this stressful time.  The mother did decide to stop eating/drinking.  This was communicated to hospice after several days.  At that point, the hospice agency returned to being supportive again (mostly).  The daughter kept in touch with me throughout this process (as we made brain donation arrangements), and reported that many friends and family were able to visit during this time.  The mother died peacefully.  Well before her death, she requested that her brain be donated.  (Mayo Jax confirmed the PSP diagnosis.)

“Gone From My Sight” – terrific online video+booklet

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Many hospice organizations distribute the blue booklet “Gone From My Sight: The Dying Experience” by Barbara Karnes, a hospice nurse. (You can order a copy online from gonefrommysight.com.) It’s a terrific booklet.  Barbara notes that “When you are at the bedside of a loved one who is dying, you don’t really see what’s happening.”  The blue booklet is all about what we don’t really see.

When speaking with local support group members, I often refer to sleeping 22-plus hours a day as a sign that death is getting closer. And I note that family members who are dying often start to withdraw from the ones they are closest to.

One conversation I have had many times with local support group members is the anxiety and terror they feel when their family member stops eating or drinking. People worry about the pain associated with “starving to death.”

This topic of “starving to death” is addressed head-on by author Barbara Karnes in a presentation on March 2011 to hospice workers with Heartland Hospice. The 90-minute presentation was recorded and edited; it aired on Community Television of Santa Cruz County. It used to be available on YouTube. It was one of the best resources I can think of for helping families prepare for the dying experience of their loved ones.

Barbara shares that she will never say to a dying person “It’s OK to let go.” She says: “I understand you have to go.”

Barbara believes that “dying is really the last act of living or the final challenge of living.”

I took extensive notes from the 90-minute presentation and shared this with many hundreds of people over the years.  In early 2019, the Barbara Karnes folks have asked me to remove those extensive notes from this blog post as they are generally Barbara’s words.  And the YouTube link is no longer working so we can no longer direct you there.

If you are proficient in the web archive, you can still find the old blog post.

And there are probably some good substitutes available on YouTube or on the Barbara Karnes website.

Robin