GO WISH Cards – A wonderful tool to explain what you want if you were seriously ill

Coda Alliance presents the ‘Go Wish Game’. It gives you an easy, entertaining way to think and talk about what’s important to you if you become seriously ill. The starter game comes with two packs of cards in contrasting colors and instructions for using the cards individually or in pairs.

For more information about the game, and to play on-line, visit www.gowish.org.

Reach And Teach Says:
“A woman at church came up to us and thanked us for having introduced her to Go Wish. She had given her mother a deck of Go Wish cards and had gone through the deck once with her mom. A month later, her mom had fallen into a coma, and her children were facing very difficult decisions about her care. They disagreed with each other and there was a lot of tension. One of the children had to go to the mother’s home to get something and found the sorted Go Wish card deck and detailed notes the mother had written about her top ten wishes. It was clear what their mother wanted, and the children were relieved to be able to follow her wishes, clearly documented, rather than having to argue with each other about what they each thought their mother might want.”

We feel very lucky that our paths crossed with the amazing people at the Coda Alliance. Having seen what we had done with Teaching Economics As If People Mattered, CIVIO, MicahsCall.org, Tikkun/NSP, and other online projects, the Coda Alliiance asked us if we could help create an online version of Go Wish. We feel that having your desires known and followed, especially when you can not speak for yourself, is a key social justice issue.

Go Wish helps you figure out what’s most important to you and allows you to have discussions about your wishes with people who may someday have to speak for you. If you are a caregiver, or may find yourself in that position, Go Wish is also a very good way for you to learn, ahead of time, what the person you may be caring for wishes. We’ve found the cards incredibly helpful in our own lives as we work with our own aging parents, and when we have shared them with others they have had significant impact.

We’re grateful to have the Coda Alliance as one of our 10/10 partners, helping to make the Go Wish card decks more easily available across the country.

Your Order Includes: You get 2 decks (two different colors) for $22.00 (which includes shipping within the United States - for international orders, please select “International Shipping” from the pull-down menu and we will add $10 to cover the additional postage).

Bulk Orders: Card packs may also be purchased in bulk in quantities up to 64 packs total. Use the pull-down menu to select bulk order quantities. Prices include shipping and handling.

If you’d like to order larger quantities, please call us at 1-888-PEACE-40.

Order Directly from the Coda Alliance:
You can also order decks directly from the Coda Alliance. They have special pricing for very large bulk orders.
https://www.reachandteach.com/store/index.php?l=product_detail&p=557

Have a kind and respectful day.

Free - Thinking Ahead Workbook and Videos available for those with Developmental Disabilities and other Cognitive Impairments

Good news. The California Coalition for Compassionate Care has created a workbook and set of videos for documenting the wishes of those with developmental delays. (It would also work well for those with other cognitive impairments.) You can get free copies of the workbook sent to you or you can download it directly. It is called “Thinking Ahead.”

Here is the website: http://www.coalitionccc.org/thinking-ahead.php

Thinking Ahead: My Life at the End - Enables people with developmental disabilities to advocate for themselves and stay in control of their lives through the very end.

Thinking Ahead: My Life at the End contains words, symbols and pictures that facilitate discussion with and decision-making by persons with developmental disabilities regarding their values, goals and treatment preferences at the end of life. The DVD serves as an instruction manual, containing vignettes that illustrate in simple, graphic format the purpose and use of the materials.

Thinking Ahead was made possible through a Wellness grant awarded to Alta California Regional Center by the California Department of Developmental Services and reflects a collaboration among Alta California, Golden Gate and Eastern Los Angeles Regional Centers, Board Resource Center and the Coalition for Compassionate Care of California.

* Thinking Ahead English
* Thinking Ahead Spanish
* Thinking Ahead Chinese

To order a free hard-copy of the Thinking Ahead workbook and DVD, send an email to
info@finalchoices.org.

Additional Resources

Providing Hospice Care to Residents of Intermediate Care Facilities for the Developmentally Disabled - A guide to facilitate access to hospice services by persons who live in intermediate care facilities for the developmentally disabled.

Have a kind and respectful day.

Drowning but can’t reach for a life vest: families, caregivers, doctors, nurses and many others helping professionals

I had such a sad experience recently. I was speaking to a group of doctors and presenting them some techniques to make their lives easier. (This was at a county hospital which deals with the most underprivileged of our community.) I was surprised by how many of the doctors in the room were so resistant to accepting help. I sensed from their comments how burnt out they were and how hopeless they had become. The system they are working under is so broken that they couldn’t imagine that anything could change or be made better. It was painful to witness their suffering.

I realized that what I was seeing was classic caregiver burnout aka compassion fatigue. Caregivers, both family and professional, get so overwhelmed, they can’t ask for help. Lifeguards see this all the time when the person becomes so fatigued that the person can’t grab hold of the life vest right in front of them. The lifeguard has to swim out to the person and literally carry them to shore.

It is so easy for those of those of those who help caregivers to just say, “Grab on and I will help you,” but it may be too late. Ideally, we should reach the person before they are that far gone, but often times, the burnout doesn’t reveal itself until it has become extreme.

I understand this. When I was caregiving for my fourth and final relative, I became so overwhelmed that I laid down on the sidewalk in front of my house, and couldn’t get up. The only reason I finally did get up was because I didn’t want someone driving by to panic and call an ambulance. (Typical caregiver behavior, I was more worried about everyone else, before myself.) I went in the house and cried for days. I was lucky because my husband was my life saver and helped me reach out for support. For so many caregivers, they are drowning and don’t know help is available or where to turn.

For healthcare professionals, there is pride in being strong and capable, and to be weak is professionally unacceptable. And because their colleagues rarely express their own suffering, these professional caregivers think they are all alone. This leads to even more isolation and inability to ask for help.

I would encourage those of you who work as a professional healer to make sure your organization develops programs and support groups for you. You deserve the same care that family caregivers are receiving in the community. I need all of you to be okay because a lot of people are depending on you. But I don’t expect you to be super-human, I understand you are very human and have the same needs as all the rest of us. Please realize you are not alone and there are people ready to help. A great organization that can help is http://www.compassionfatigue.org/.

Have a kind and respectful day.

When you are going the wrong way, turn around.

When we are making the decisions for those in our care, it is important to make sure that the decision is still working. You may find that you made the best medical decision you could and then the plan didn’t work. When this happens, it is important to reconsider the treatment plan. Otherwise, you’re driving down the wrong road: You can keep driving and driving, but you will never get to where you are going. You need to stop, ask for new directions and then start down a new path.

You may also need to modify your expectations when things don’t work. Sometimes we are so desperate for the plan to work that we can’t bear to see the truth when the plan fails. You are not helping your loved one by continuing treatments that don’t work. You are only subjecting the patient to needless side effects and increased suffering. One thing that doctors may want to do is to try a time-limited trial of a proposed treatment option. “Let’s try it for a few days or for a little while and see how it goes.” This is a really great option. After the set time expires, you can check to see if the decision is working. If it is not working, go back through the decision making process and make a better decision based on the new information about the patient’s changing condition. Don’t be stubborn and keep driving your loved one in the wrong direction. Take this as an opportunity to turn around and get it right.

Have a kind and respectful day.

Patience - Lessons Learned - Viki’s Journey

Patience – Lessons Learned -  KindEthics.com Newsletter

Quote of the Month:

The individual is capable of both great compassion and great indifference. He has it within his means to nourish the former and outgrow the latter.
Norman Cousins

I love when life reminds me of the lessons that I thought I had learned, but then I find out I need a refresher course. This month’s newsletter is about having patience, but not just your average patience, instead good-natured and seeking to understand patience. There are two parts to this story.

The second part first:

Two weeks ago I had to make about 50 phone calls to set up the events for my book tour in July. As I was contacting different groups and reaching out to the community organizations that help those with differing levels of capacity, I was on a roll. Each call was a wonderful opportunity to connect with like-minded people about our common goals. I tend to be a quick person and was enjoying the speed with which I was accomplishing my tasks. Then it happened, I contacted some organizations that focus on helping those who communicate more slowly or differently, and all of a sudden, my world slowed down. The reason being, the people I needed to talk to also suffered from the same issues of communicating differently. What had taken me 10 minutes to accomplish on other calls, now took me 25 minutes.

I had a choice. I could politely excuse myself from the call and just move on to someone else. I could get frustrated or start multi-tasking while I waited for them to say what they needed to say. Or, I could be present, slow myself down, listen differently and be patient. I realized that patience was not about “waiting it out,” but it was about staying connected with an open heart as I remembered I needed to listen differently.

When I did this, I heard amazing things. One gentleman with bipolar disease told me that he hoped others would understand when he said, “I can do it – Until I can’t.” I had never heard this phrase but it was a gift to me because it so clearly explains the needs of someone with a fluctuating mental illness. I had understood the concept as this is exactly what I talk about throughout my book. Keeping people included and empowered, despite their limitations, until those instances when they need us to step in and protect them. But I hadn’t had such an easy way to say it. I am so grateful he shared it with me.

Part 1 of the story:

Back in March, when it was Brain Injury Awareness Month, I was fortunate to connect with a wonderful woman named Tammi Diaz. She suffered a traumatic brain injury when she was hit by a car, but she has overcome her injury, found a new way to be, and is a wonderful advocate for those in her community. I contacted her because I wanted to interview her on my online radio show because I thought it would be great for my listeners to hear first hand from someone who still deals with the effects of a brain injury. When I first spoke with her, I was acutely aware of her slightly slower speech. Not much slower, but just enough to notice. She shared with me her stories about the amazing way she advocates at the state legislature and her passion for improving the public transportation in her community. Coming from a show biz background as a child, I wondered if my listening audience would keep listening once they heard her voice. I realized I might lose some listeners but that was the whole point of the show, to get people to hear from people struggling with brain injuries. (You would have thought that a few weeks later, I would have known that I needed to be patient when I was making all those phone calls. But my own agenda and schedule got in the way. Lesson re-learned.)

I booked her on the show along with the director of the Brain Injury Association in Utah. What a wonderful and inspiring interview. I realized that we don’t hear these types of voices in the media or on television shows. This is a silenced community like so many who struggle with mental illness, dementia, developmental delays etc.

So what is in this message for all of us? I hope that you can remember to slow down and to listen differently when you are talking to someone with a speech or brain disorder. Don’t rush, don’t complete their sentences, don’t get annoyed and don’t think it isn’t worth your time. The gift of understanding that you may receive from someone who experiences the world differently is inspiring. I am so grateful that I got the opportunity to practice what I teach. Each phone call brought a gem of knowledge and a connection with a terrific person. Please role model this kind of behavior for your kids, your colleagues and for others in the public when you can see a store clerk growing impatient with someone with a disability. We can make a difference in the lives of others, by listening with a generous heart and a good-natured attitude.

Have a kind and respectful day.

The medical decision is just part of life’s equation.

So many people ask me what they should be thinking about when making medical decisions. Whether you are making your own decisions or having to make decisions for others, there is a lot to think about.

Your doctor or your loved one’s doctor will talk to you about the medical aspects of any health-related decision. But that doesn’t mean that you are limited to thinking only about medicine. It may be important to consider the financial costs associated with the treatment plan, if the patient’s religion should play a role in the decision and whether there are cultural issues that come into play. Think about the overall picture of your loved one’s life. In The Caregiver’s Path to Compassionate Decision Making, I offer lists of questions to help you understand the whole picture.

It would be nice for the decision to be as simple as asking, “Will the treatment work and what are the side effects?” But life isn’t that simple. What if you were about to make a medical decision that allowed something to be done to the person’s body that was forbidden by the person’s culture or religion? You might have chosen a certain treatment to save her life, but because the patient received that treatment, she will no longer be able to move on to the hereafter. Yes, the medical decision was a good one, but how the decision will affect the person’s life, based on her personal belief system, was not.

If the person you are making decisions for is very religious, then it would be good to find out if there are any religious rules or values that you should consider in your decision making. I know that when I work with my hospice patients, it is important to know if there are certain rites or blessings that have to be performed before the patient’s death. I don’t have to agree with what the person wants, but if I am the caregiver, then I need to do what I can to make sure the person’s religion or culture is respected. I will need to call in the appropriate religious leader to take care of the spiritual needs of this person. If the person is not religious or spiritual, then you will need to respect this and leave religion out of the decision making process.

For most people, the financial costs of the medical treatment will need to be considered or you may be putting the person in financial danger. You may be in charge of making only the healthcare decisions, but you should make sure that you or somebody else checks with the insurance company to find out whether or not it will pay for the treatment and to get the proper authorizations. Don’t let a simple mistake like forgetting to call the insurance company to let them know that your loved one was admitted to the hospital put your loved one in financial distress. Making decisions without using the financial questions could bankrupt your loved one. Our goal of protecting the person should include protecting his or her wallet.

For a list of questions you can use when making decisions, go to the resource page and download the list from the excerpts from The Caregiver’s Path to Compassionate Decision Making - Making Choices for Those Who Can’t.

Have a kind and respectful day.

Great new guide for when you leave the hospital

Too often we spend a lot of time thinking about going into the hospital but no time thinking about coming home. The hospital discharge process is when patients are vulnerable to misunderstandings and errors. The patient is feeling sick and not able to listen to the instructions, the loved one may or may not be there, and the nurse rushes through the crucial information. If you can, make sure you have a loved one beside you when the nurse goes over the discharge instructions. If you have questions, ask until you get the answers you need. You can even ask the doctor to tell you what you will need to be prepared for when you go home when you are talking about the upcoming surgery or procedure.

Here is a guide to review and use before you think about going to the hospital.

http://www.medicare.gov/publications/pubs/pdf/11376.pdf

Have a kind and respectful day.

Book is available now at TheCaregiversPath.com

The Caregiver’s Path to Compassionate Decision Making - Making Choices for Those Who Can’t is available on TheCaregiversPath.com. You can also pre-order it on bookstore websites and it will be in bookstores on July 1.

Have a kind and respectful day.

Kindness Reminder: Cook an old family recipe

People ask me, what can I do to make my loved one’s life a little better. Here is this weeks Kindness Reminder. To sign up for more fun and thoughtful ways to say I care and I am thinking about you, go to my website at KindEthics.com and sign up in the box at the top right.

When people live in institutions, they don’t get to experience the joy of a home cooked meal or the ability to cook the old family recipes anymore. And even those who don’t live in a facility, they still aren’t cooking like they used to. A good friend of mine, Jacque, used to prepare a stew or pot roast in a crock pot for me to take to my Dad’s house. He lived with his two sisters and the three of them loved the smell of the crock pot cooking all day.

If you can’t cook for the person, perhaps you can have someone prepare a favorite recipe and deliver it to the person. At the assisted living/dementia facility where my dad and my aunt lived, they had a family cooking area. My husband baked a chocolate souffle for them from scratch. They sure enjoyed watching him put it all together and they really enjoyed eating it.

Have a kind and respectful day.

Speaker phone, conference call or webcam your loved one’s doctor appointment.

If you can’t go to the doctor’s appointment with your loved one, whether it is because of work or distance, you can go by speaker phone. Have your loved one take their cell phone or use the doctor’s phone and put it on speaker in the exam room. You can give the doctor more information if your loved one isn’t a good communicator and then listen as the doctor tells you both the treatment plan. You can also use the conference call function to make sure the other family members are included. Communication is essential to understand the situation and to make good decision making.

If your loved one is in the hospital and you can’t make it, have someone bring in their laptop or ask someone at the hospital to set it up so you can use your webcam to see how your loved one is doing. There is nothing like seeing the person with your own eyes to help you understand what the doctor is talking about. Too often we can’t imagine what the doctor is telling us as we still picture our loved one like they used to look. An image, either by webcam or picture can give you a better picture of the condition of your loved one and what he or she is going through.

I am not saying that you shouldn’t come in person to see your loved one or to the doctor’s appointment, but for those times when you can’t be there, use the technology available.

Have a kind and respectful day.

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