– step-by-step care plans

Linda, one of our local support group members, passed along this short Washington Post article to me.  It’s about a new web-based tool called CareSolver (see  The website describes the goal as: “step-by-step care plans tailored to your loved one’s needs [to] put you back in control.”  If anyone tries it, please let me know what you think so I can share with everyone.

Here’s a link to the Washington Post article:

Family caregivers find support in new Web-based tool
Washington Post
By Maggie Fazeli Fard
Published: May 27, 2013


Excerpts from “A Caregiver’s Challenge: Living, Loving, Letting Go”

A social worker friend lent me this book recently:  “A Caregiver’s Challenge: Living, Loving, Letting Go,” by Maryann Schacht, MSW, who lives in Santa Rosa.

The Introduction to the book is about being thrust into the caregiving role, without warning or training.  After her husband was diagnosed with cancer she realized:

“In spite of all my protesting and my shortcomings, I had to accept the inevitable and become the best caregiver that I could be.”

She writes:

“This is the ultimate caregiver’s challenge: to remain steady in adversity and loving throughout the loss.  We have to develop the ability to let go of all expectations and accept mortality, our partner’s and our own.”

In the remainder of the book, the author offers many practical suggestions and plans.  There’s a section on evaluating pain.  There’s a section on organizing one’s key documents and records.  Each section is short and to the point.

Besides the Introduction, the section I liked the most was about having a conversation with your loved one about medical decisions.  I wondered if most of us would be able to ask or answer many of the questions the author raised.  I’ve copied below some of the many questions she posed that families discuss.  The author strongly encourages a summary of this conversation and related decisions be put in writing for all family members to see, if the need arises.


Excerpts From:

“A Caregiver’s Challenge: Living, Loving, Letting Go,” by Maryann Schacht, MSW, 2005.

1.  Do you pride yourself in doing things for yourself?
2.  Have you learned how to ask for help?
3.  Are you able to take in and accept other people’s desire to help?  If not, what previous patterning makes it hard for you to do that?
4.  If your ability to do for yourself lessens, in what way will it affect your self-image?
5.  How do you feel about life if dependency becomes a part of it?

Your Support System
1.  Do you believe that your family and/or friends are or will be supportive of your present or future medical decisions?
2.  Have you made any arrangements for a family member or friend to make medical decisions for you now or in the future?  If so, under what circumstances?
3.  Are you comfortable with whom you have chosen?
4.  Do you have any business, legal, or personal matters that feel unfinished at this time?  What do you need to do in order to put your affairs in order?
5.  What do you believe about the way you would handle illness, dying, death?

Home and Hearth
1.  Is your current environment comfortable?
2.  Do you need to make physical changes in it?  How can you arrange to do that?
3.  Are you considering moving or having someone come to live with you?  What are the pros and cons?

1.  Is money for your care a problem?
2.  Do you hesitate to spend money on yourself?
3.  Are you concerned about the financial impact your care is having on your family?  Have you discussed your concerns?

Treatment Considerations
If a treatment is painful or invasive but offers a reasonable hope for a good outcome, would you agree to it?  If the changes are slim and the results are going to be problematic, do you want to consider it anyway?  In coming to a conclusion you might want to consider the impact the treatment will have on your:
* relief from pain
* ability to experience relationships
* ability to engage in favorite activities
* ability to think
* ability to communicate
* financial costs
* suffering and anxiety to others
* reconciliation and tying up loose ends
* control of bodily functions
* ability to move about
* privacy
* religious needs

I realize it is difficult even to face the possibility of dying.  The following statements have been helpful to other people.  Adapt or adopt them as you see fit.  Add to them.  Subtract from them.  Feel free to explore.  I suggest that you keep a pad and pencil handy and make notes as you go along.  Keep on communicating.
* In case of doubt, I want you to extend my life.
* I want only those treatments that offer reasonable hope of restoring me to a condition that my loved ones think would be acceptable to me.
* I do, or do not, want treatment if there is only a remote chance it might help me.
* I want treatment decisions made with consideration of my overall condition and the treatment’s ability to improve this.
* I want sufficient pain medication to keep me free of pain even if the dosage necessary might shorten my life.
* I want the cost of treatment and the financial impact on my family or community to be considered when making decisions.
* If I lose consciousness and have no reasonable hope of regaining it, I want all treatment stopped (including food and fluids).
* I want my loved ones and professionals to make decisions about my care the way they think I would make them, if I were able.


“Advice for caregivers from the front lines” (SJMN, 6-9-13)

This article in today’s San Jose Mercury News is by a woman who provided care to her husband who suffered a stroke a few years ago.  Then he broke his hip and had hip replacement surgery.  He fell twice more.  He also required dental surgery.  We are told in an editor’s note that her husband passed away; they were married almost 47 years.

At some point along the way, she realized that she had a new job as caregiver.  She writes:

“To my dismay, I was short-tempered and irritable as I wiped up or washed spilled food and urine on the floor and on his clothes.  Worst of all was the loss of my companion and friend for nearly 48 years.”

Despite her husband’s objections to having a stranger in the house, she eventually hired a home care agency to provide aides.

She offers advice to fellow caregivers:  “Remember, you can’t help if you are worn out and exhausted, which could lead to your own illness.”  She encourages others to “Do what you can without jeopardizing your safety and sanity.”

Along these lines, she offers many suggestions including:

  • Get sufficient sleep.
  • Join a caregiver support group that fits your specific needs.
  • Take time to exercise every day (walking, swimming) to breathe fresh air and look at nature.
  • If friends offer help, say “yes.” Have a list prepared of what small jobs someone else could do for you such as deliver a meal, visit your spouse, research a necessary but unfamiliar something that you need to buy, etc.
  • Find a few people with whom you can talk honestly, so you don’t blurt out your sorrow to the startled bank clerk, who simply asked “How are you today?”
  • Look ahead and research housing options for respite and possibly the future. Visit them.

She also recommends two books:

“When the Man You Love Is Ill: Doing Your Best for Your Partner Without Losing Yourself” by Dorree Lynn and Florence Isaacs (Marlowe, 2007.)

“Mainstay: For the Well Spouse of the Chronically Ill” by Maggie Strong. (Bradford Books, 1997.)

Here’s a link to the article:

Advice for caregivers from the front lines
San Jose Mercury News
By Joanna H. Kraus
Bay Area News Group Correspondent
Posted 06/09/2013

Thanks to local support group member Karen for passing this article on to me.