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.”
“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.
“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?
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
* 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.