“The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life” – new book

This recent New York Times article is about a new book “The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life,” by Ira Byock, MD.  The author of the short review says:  “What makes Dr. Byock’s book particularly valuable is the chance to eavesdrop on the doctors we’re often quick to blame. He tells what it’s like on the other end of the stethoscope.”  The reviewer is “most appreciative of [Dr. Byock’s] front-line insights into the way medicine operates at the end of life.”

One take-away from this book must be that we all need to have advance directives or we may suffer the fate described of the family matriarch in the ICU whose niece objects to stopping all treatment as “letting her die [when] only God can take a life.”  Apparently most Americans do not have advance directives.

Here’s a link to the full article:


The New Old Age Blog: Caring and Coping
The Caregiver’s Bookshelf: Dying by Degrees
The New York Times
By Paula Span
March 20, 2012, 4:25 PM

“Wallet Smarts” (caring.com)

This short article on caring.com is about changing a purse or wallet for someone with dementia to something that might be safe to carry.

I read about this article on California’s Link2Care email support group.




Wallet Smarts That Preserve an Older Adult’s Dignity and Security
By Paula Spencer Scott, Caring.com senior editor
Last updated: February 02, 2012

A loved one who lives with a family caregiver probably has little need to carry a wallet or pocketbook — but that doesn’t mean that many older adults don’t want to continue the habit.

A purse or wallet, after all, is something he or she probably carried since the teenage years. Giving it up now feels like yet another loss and symbol of worthlessness to many older adults. Lack of documentation and money can create needless anxiety.

Understandably, you may worry about safety and security. Here’s what helps:

Exchange a driver’s license for an official ID. A license is a powerful source of identity, security, and importance. Seeing an empty space in the wallet where a driver’s license used to rest is disconcerting. A solution: Take your loved one to get an identification card at a local DMV office. (In some states, you can do it online.) It’s not a license to drive, though it looks similar to one.

Provide a little cash. Large amounts of money can get lost, given away, or spent on unnecessary items. But it’s better for someone obsessed about having a wallet or purse to have the security of seeing a few bills in the billfold. Without visible cash, your loved one may experience a constant, low-grade anxiety that “all my money is gone,” or “I’m broke.” He or she may get on a jag of wanting you to go to the bank together to get some, to be reassured.

Get a credit card with a very low balance. You do want to remove your loved one’s credit cards if financial responsibility has become problematic. One option is to replace a card with one that has a low limit that you can monitor. Some caregivers replace effective cards with outdated ones that no longer work; when their loved one tries to use it, they find out that it’s denied and get upset in the moment, but then they often forget about it. Other people are content to see some cards in their wallets that look like credit cards — library card, membership cards, plastic hotel room keys. Lacking the wherewithal to actually use them, someone with dementia, especially, will feel reassured by simply seeing something there that looks right “just in case.” Experiment to see what works in your specific situation.

“Caring for the Caregiver”

Local support group member and volunteer Denise is reading the book “How to Care for Aging Parents.”  She is offering occasional reports on the highlights of the book.  She has read the third chapter, which is about caring for the caregiver.  Here are Denise’s take-aways.  Despite the title of the book, the information applies to all caregivers, not just adult children caregivers.



Denise’s Notes to

Chapter three – “Caring for the Caregiver”
of the book “How to Care for Aging Parents”
by Virginia Morris and Robert Butler

The last couple months I’ve been reading “How to Care for Aging Parents,”” by Virginia Morris and Robert Butler, 2004, and passing on tips appropriate for all caregivers.  Chapter one looked at the importance of discussing end of life preferences, finding important documents, getting organized, and making a plan.   Chapter two talked about changing relationships and when to intervene.  Now, I give you chapter three, ‘Caring for the Caregiver.’  This chapter provides some guidelines to prevent your developing compassion fatigue.

Start by setting limits

– First, think about what your motivation is for all the caregiving you do.  Harboring resentment for being asked to do more than you are willing and/or able, is harmful, unhealthy stress.

– Then, make a list of true necessities and another list of extras.  If you have the resources (including other family members and/or volunteers), delegate so you can be there for the things only someone with a close, personal relationship can do.  If everything falls at your feet, get real about your feelings and limited energy and time.

– Next, write up a schedule to get those necessities done.  Be sure to include time for yourself to recharge.  There will be enough interruptions to that schedule you will be glad to be rested when demands increase.  Get used to saying, “No,” even to yourself, so you can stick to that schedule.

– Finally, let go of futile battles.  Fruitlessly trying to get a loved one to change their ways is unnecessarily increasing stress for both of you.  Make your best argument, then drop it, at least until circumstances change enough to warrant revisiting the issue.

Deal with your emotions

It is inevitable that strong emotions will surface when caring for a loved one who is ill or frail over a long term.  Following the guidelines above will help alleviate feelings of caregiver guilt and resentment.

If anger and resentment do arise, try writing about what makes you mad.  Once you identify the source of the aggravation, change what you can about the situation to avoid future conflicts.  If your efforts prove unsuccessful, consider talking to a therapist, social worker or support group.

Hopelessness, sorrow and grief are common, normal feelings when you are watching someone you love struggle with declining health.  In many cases their reduced abilities and changed personality cause you to grieve the person you once knew.  You may even be kicking yourself for thinking, at some particularly miserable point, they would be better off dying sooner than later.  This type of sadness is called ‘anticipatory grief’ and everyone deals with it differently.  Cut yourself some slack, talk it out with someone who understands (another good use of a support group),  and don’t forget to tell the person you’re losing how you feel about them.

Twelve Steps to a Healthy Mindset

Most of them you’ve heard a million times already like, take time for yourself / indulge yourself / relax / laugh / pursue hobbies, stay connected with friends for social support / keep up with the news for perspective, and seek spiritual support.  They’re important but I found these two unique and worthwhile:

#4 Set aside 15-30 minutes just to worry.  Jot whatever is distracting you from work or sleep to think about at a designated time.  You may find when get to it, that it wasn’t that critical after all.

#7 Take action rather than just grumble when you’re not happy with poor service, rude orderlies, chronically late home-care workers, etc.  Calmly, but persistently, move up the chain of command until you get satisfaction for your complaint.  It will give you a sense of control and alleviate unhealthy frustration and anger, aka: stress.

Compassion Fatigue – Article and Websites

Three people emailed me a Good Morning America news story on “compassion fatigue” today so I guess the story is resonating with a lot of people.

Compassion fatigue is “a term used to describe the symptoms of secondary post-traumatic stress caused by caregiving.”  One person describes it this way:  “Your impulse is to rescue. You don’t have any personal boundaries, but you become isolated and lose your self-care in the process.”

The article raises the case of the Sunnyvale, CA mother who killed her 22-year-old autistic son and herself in early March.  She had told a neighbor that she was overwhelmed with caring for her son.

The article also mentions the Compassion Fatigue Awareness Project, which has a website compassionfatigue.org.  That site has a list of symptoms of compassion fatigue here:


You can find a compassion fatigue self-test here:


Finally, Healthy Caregiving has training materials and workbooks on compassion fatigue.  See:


Here’s a link to the news story that has been circulating far and wide today:


Compassion Fatigue Strikes Family, Even Animal Caregivers
By Susan Donaldson James
Good Morning America
Wed, Mar 21, 2012 4:28 PM EDT

Though it’s a Good Morning America news story, there doesn’t seem to be video/audio associated with it.