Viki’s article in “In Your Corner Magazine” – Rock Steady Boxing – Parkinson’s Boxing Classes

I am so honored that an excerpt from my Resource Workbook and Visual Conversation Toolkit, The Four-Step Process:  Asking For and Accepting Help, was included in Rock Steady Boxing’s – In Your Corner Magazine.

Viki Kind’s article – In Your Corner Magazine – Rock Steady Boxing

You can also subscribe to receive future In Your Corner magazines in the mail.  Subscribe to In Your Corner Magazine – Rock Steady Boxing

Rock Steady Boxing, is an amazing organization that gives people with Parkinson’s disease hope by improving their quality of life through a non-contact boxing based fitness curriculum.

        THE CHALLENGE

Have a kind and respectful day.

 

4th Edition Available – Resource Workbook, Visual Tools and Conversation Guide

WORKBOOK AVAILABLE ONLY BY CONTACTING VIKI DIRECTLY

I am excited to let you know the 4th edition which has 12 new pages of uniquely designed visual conversation tools is now available.  It includes articles, worksheets and templates  you can copy and share to help with issues such as evaluating danger, making challenging medical decisions, managing caregiver burnout, and communicating your end-of-life wishes. – Order here or email Viki directly.   Resource Workbook, Conversation Guide and Visual Toolkit   135 pages (8½ x 11)
Usually $40 – SPECIAL: $34.95 plus sales tax and shipping

       Table of Contents

• Section 1: Medical Decision Making Tools
  
• Crisis Planning Worksheet for Urgent Decision Making
• Quick Tips for Crisis Decision Making
• Drawing an Outcome Roadmap Article and Diagram
• Recovery is Not a Straight Line – Managing Expectations
• Weighing the Options – Risks, Benefits and Burdens
• Weighing the Options Exercise
• Is the Patient Willing to Endure the Burdens to Get the Benefits?
• Double Weighing the Options Exercise
• Combining an Option Roadmap with the Risks, Benefits and Burdens When Discussing the Alternatives Article and Diagram
• Two-Hand Test for Medical Decision Making
• Two-Hand Test for Medical Decisions Making Diagram
• Evaluating Medical Options Through Three Lenses
• Evaluating Medical Options Through Three Lenses Diagram
• Sliding Scale for Acceptability: Where are the Patient’s Boundaries?
• Sliding Scale for Acceptability Exercise
• Evaluating Treatment Options When You Know the Patient’s Long Term Goals Article
• Evaluating Treatment Options When You Know the Patient’s Long Term Goals Algorithm
• Four Boxes Motivation Article and Exercise – Exploring Why thePa tient Isn’t Following Your Treatment Plan
• 5-Step Process to Help the Person Get Out of Denial
• Questions to Ask When Making Medical Decisions
• 6 Tips to Improve Communication with Your Doctor
• Getting Ready for Your Doctor’s Appointment
• Section 2:  Evaluating Danger and Risk Tools        
• Can the Person Connect the Dots?
• Evaluating Danger and Risk When Making Decisions
• Evaluating Risk for Those Without Capacity Diagram
• Evaluating the Dangers Worksheet
• Solutions to Creating a Restraint-Free Life        
• Section 3:  Caregiver Conversation and Support Tools    
• Are You Care-grieving?
• The Ladder Diagram – The Caregivers Needs Count Too!
• Using the Ladder Diagram
• How is Your Relationship Now That Illness is a Part of Your Lives?
• Viki Kind’s 4-Step Process for Asking For and Accepting Help
• 4-Step Process for Asking For and Accepting Help Worksheet
• Caregivers and Guilt
• How to Say “No” Handout
• Section 4:  End-of-Life Conversation Tools      
• Insider’s Guide to Filling Out Your Advance Healthcare Directive
• Quick Tips for Filling Out Your Advance Directive
• Quality of Life Statement Template
• Viki’s Quality of Life Statement
• Guidance for My Decision(s) Maker
• What I Want My Doctor to Know About My Faith and/or Culture
• Having My Doctor Review My Advance Directive
• 5 Quick Tips for Making the CPR vs. DNR Decision
• Avoiding the Pitfalls in CPR vs. DNR Decision Making   
• Recommended Books and Additional Resources   
• Acknowledgements         

Clarifying How to Use the Structure of my new Quality-of-Life Statement to Make it Your Own

The goal of writing a quality-of-life statement is to have it express your personal preferences and to have it sound like you. One of the problems with many of the legal/medical forms is that they all sound alike and they don’t allow your voice to be heard. I encourage you to use the categories I have listed below to express what you would want people to know about you if you were too sick to speak for yourself. You can use some of my language from my document at http://kindethics.com/2012/01/my-new-quality-of-life-statement-to-attach-to-my-advance-directive/ if you would like but my goal is for you to make it personal and meaningful to you. You will know you have gotten it right if people say to you, “Yes, this is sounds like what he/she would say.” By making it feel personal, you will help your family/friends feel more confident that they are truly honoring your wishes.

Sections of QOL Statement to Consider Including in Your Directive:
? Types of illnesses where this advance directive would apply.
? What is important to me?
? What conditions would I find reprehensible to live with long term?
? CPR, ventilator and feeding tube preferences.
? Reassurances for the decision maker.
? What is a good death in my opinion?
? What I want the doctors know about honoring my religious/cultural beliefs both while I am sick and/or dying?

If you have questions, feel free to contact me at kindethics@gmail.com. If you would like to share your new document with me, I would love to see it so I can see how the structure is working.

Have a kind and respectful day.

Getting Caregivers to Ask for Help – Viki’s Four-Step Process

Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. Leo Buscaglia

I have never been very good at asking for help and like many family caregivers, I didn’t think that my own needs mattered. Thinking I had to do everything all the time caused me to have two breakdowns; once during my early years of caregiving and again the last year of my caregiving journey. (I was a caregiver for over 17 years.)

I wish I had known about the following statistics from the MetLife Study:

Family caregivers experiencing extreme stress have been shown to age prematurely and this level of stress can take as much as 10 years off a family caregiver’s life.

40% to 70% of family caregivers have clinically significant symptoms of depression with approximately 25%-50% of these caregivers meeting the diagnostic criteria for major depression.

Stress of family caregiving for persons with dementia has been shown to impact a person’s immune system for up to three years after their caregiving ends thus increasing their chances of developing a chronic illness themselves.

I don’t know which statistic frightens me the most. But I do know that I have paid an emotional, physical and financial cost for being a caregiver. (I also loved taking care of my family.)

But it didn’t have to be that way. I could have and should have asked for help. But I am a caregiver and when people told me, “Just make time for yourself,” it wasn’t that easy.

If you think about who in a family becomes the caregiver, it will usually be the person who is more nurturing and generous with their time. So by nature, the caregiver is the type of person who already gives more than others. And this becomes a vicious cycle of give – give – give instead of give – receive – give – receive.

I recently said to my friend who is an overwhelmed caregiver, “Maybe now is a good time for the rest of your family to learn what they need to do to help their grandfather.” What I heard back from her were lots of excuses:

They don’t want to help
They don’t know what to do
They don’t know him like I do
They will just make it worse
I don’t have time to teach them
It is just easier if I do it
I get tired of asking
I don’t think they would help, even if I asked
Why should I have to ask, they should just know what to do
I don’t want to be a bother
It is too much effort to ask

Sound familiar? I realized in that moment that it isn’t always that the family won’t help; it is the caregiver who is resisting asking for help. So let me ask you. If you had a broken shoulder, would it be okay to ask someone to carry your groceries to the car? If your car broke down, could you call for a tow truck? When your loved one needs help, don’t you get them the help you need? Then why don’t you deserve the same attention? Your needs matter and you deserve to have someone help you.

Viki’s Four-Step Process

Step 1:
I encourage you to explore what is keeping you from asking. Write down what goes through your head when someone says, “You should just ask for help.” What are your resistance statements?

Step 2:
Take your list of resistance statements and put a statement beside it to help you get past what has been preventing you from asking for help. Here are a few examples caregivers have come up with:

They don’t want to help – Well I don’t know this because I haven’t given them a chance
They don’t know what to do – I could teach them
I don’t have time to teach them – You don’t have time because nobody is helping you. If you teach them now, then they can help at other times in the future.
It is just easier if I do it– Only the first time.
Why should I have to ask, they should just know what to do – Would I have known what to do before I became a caregiver? Then how would they know?

I am not saying you will be able to get past your barriers right away, but you need to begin so you won’t break down like I did. One thing that helped me was to realize that the other person won’t do what needs to be done as well as I would. They may do things slower, awkwardly at first, and in their own way. But that is okay because you are going to get free time and your loved one will be okay.

Step 3:
Make a list of all the things that would help you such as practical, emotional, financial and information support. Write a really long list and carry it with you so when people say, “What can I do to help?” you can pull out the list, hand it to them, and ask them what they would like to do.

Ask for specific things:
Can you call mom each week and ask her about her favorite memories or talk to her about what is worrying her?
Can you call me every day to check on me? (This can be very helpful to keep your depression under control.)
I don’t have time to read this book about Maria’s disease. Can you read it and then send me the main points?
Can you research what is the best wheelchair to buy?

People can help from a distance:
Can your brother listen to Dad’s doctor’s appointment by speaker phone?
Can they do the shopping for groceries online and have the food delivered?
Could they pay for someone to come to the house to give you a massage?
Can they take over paying the bills or set up automatic bill pay for you?
Can they send $51 a month so you can pay for three hours of respite care?
Ask someone to create a phone tree to disseminate information. This way you don’t need to make all the calls. Have others spread the news.

Local help:
Mom needs a ride on Thursday for her haircut.
Could you pick up some milk and eggs when you go to the store today?
I need someone to come and clean my kitchen.
Can you sit with Bob on Thursday night so I can go to a class about coping with dementia?

These are just a few ideas. I am sure you can come up with lots of ideas, big and small. (Don’t hesitate to put everything on the list. You will be surprised by what people are willing to do.)

Step 4:
Ask a lot of people. You may need to ask 5 people to find one that will help you but that is okay because now you have one person who will help you. Ask people for things they can actually do. Different people have different abilities. Show them the list and let them choose what they would be comfortable doing. Tell them the deadline for when the task needs to get done.

Oh no, I hear your resistance statement coming through. “There is nobody I can ask.” Here is my response to break through your resistance. There are more people in your circle of friends, family and community than you think. Call a local faith community and ask for help. (You don’t even need to belong to that church or synagogue.) Call the Area Agency on Aging in your town and tell them what you need. They can help connect you to resources. Tell the people in the hair salon about the struggles you are facing and maybe they know someone who can help. Many high schools are requiring kids to do community service hours. Call the school and ask to have someone assigned to help you.

It may feel like a lot of work to begin to ask, but don’t let this stop you. This is another of those resistance issues. Remember that you are not just asking for this one time, you are training this person for the future. If you can get them to trained and used to helping, they might be able to help you every week or two.

Lastly, give gratitude even when you think your family should feel obligated to help. Of course they should but let’s be realistic. Our practical goal is to get them to help more than they have been. Saying thank you and giving words of appreciation go a long way to reinforce good behavior. And if that doesn’t work, you can always say, “If you don’t have time to help, then you are going to have to pay to hire someone to help me.” That will get their attention.

Have a kind and respectful day.

My New Quality-of-Life Statement to Attach to My Advance Directive

The goal of writing a quality-of-life statement is to have it express your personal preferences and to have it sound like you. One of the problems with many of the legal/medical forms is that they all sound alike and they don’t allow your voice to be heard. I encourage you to use the categories I have listed below to express what you would want people to know about you if you were too sick to speak for yourself. You can use some of my language from my document below if you would like but my goal is for you to make it personal and meaningful to you. You will know you have gotten it right if people say to you, “Yes, this is sounds like what he/she would say.” By making it feel personal, you will help your family/friends feel more confident that they are truly honoring your wishes.

Sections of QOL Statement to Consider Including in Your Directive:
? Types of illnesses where this advance directive would apply.
? What is important to me?
? What conditions would I find reprehensible to live with long term?
? CPR, ventilator and feeding tube preferences.
? Reassurances for the decision maker.
? What is a good death in my opinion?
? What I want the doctors know about honoring my religious/cultural beliefs both while I am sick and/or dying?

Here is my new quality-of-life or meaningful recovery statement. My wishes haven’t changed but how I am saying it is much more complete. Feel free to take any part of it you would like. Use the basic headings and then make it personal and meaningful for you. I would recommend attaching it as an addendum to a basic advance directive form that works in your state.

Advance Healthcare Directive for Viki Kind – dated 11/1/2012

Types of illnesses where this advance directive would apply whether I am terminal or not terminal.

I can never list every type of disease that might make me begin to lose my mental capacity but the list might include, but not be limited to: all types of dementias, stroke, brain injury, mental illness, anoxic event, etc. I don’t have to be completely out of it like being in a coma, persistent vegetative state, or minimally conscious state for this document to go into affect. And I don’t have to be terminal. The point is that I don’t want to have my life prolonged/sustained if my brain no longer works well enough to enjoy what is important to me.

What is important to me? (The loss of any of these might be enough for my decision maker to implement my wishes documented in this advance directive.)

To make a difference in the world.

To be able to communicate with those I love.

To receive the joy that comes from personal relationships.

To have some independence.

To be able to give love, not just receive people’s kindness.

To not be a burden on my family/friends – financially, emotionally or physically.

To have a good death as defined by me (see below).

What conditions would I find reprehensible to live with long term? (Please give me the chance to recover if recovery is possible, but if I am not recovering to a level of functioning that I would think is worthwhile, whether terminal or not, then choose comfort care and hospice which I understand will lead to my death.)

All of the following conditions do not have to be present at the same time for the decision to be made to allow me to die from my illness/injury. Any one of these conditions may be sufficient enough to change my course of treatment from prolonging my life to comfort care and allowing a natural death.

This list of “Conditions I would not want to live with” includes but is not limited to:

Not recognizing my loved ones.

Not being able to communicate by voice, computer or sign language.

Wandering around aimlessly.

Suffering that isn’t necessarily pain related.

Significant pain that can not be controlled.

Significant pain that requires so much medicine that I am sleeping all the time.

Having to live in a skilled nursing facility or sub-acute facility permanently with my cognitive impairment. Nursing homes create such sadness in me every time have I visited or have stayed overnight with a loved one. I am too empathetic and take in people’s suffering too easily to be in that environment. It would destroy me long term. A short-term stay in a SNF/rehab/sub-acute is okay if I can recover to a life that I would consider worth living. (I understand that with certain types of traumatic brain injuries, they take a longer period of time to evaluate whether or not recovery is possible.) But if it looks like I am not recovering, then no thank you.

Okay, now the CPR, ventilator and feeding tube conversation.

My overall guideline is that if CPR, ventilator support or a feeding tube/TPN can return me to what I would consider to be a meaningful existence, (what is important to me), then please give me CPR, ventilator support and/or a feeding tube/TPN. But there has to be value in these medical options and any other medical treatment choices that are being considered. Don’t do things, including but not limited to, antibiotics, etc., that are just to sustain my poor condition.

I am not opposed to living with a feeding tube/TPN if it gives me many years of being able to enjoy what is important to me. But if the feeding tube/TPN is just to sustain my miserable condition, (what I would consider reprehensible) then don’t put it in or give me feedings through it; and please take the feeding tube out if it is already in. (Okay, if I am on hospice and the feeding tube gives you access for administering the pain and suffering meds I need, then you can leave it in. But don’t put food or additional liquids in it.) The feeding tube, like all medical decisions, needs to create value in my life, not just sustain my life.

If I am still healthy and can still experience lots of the things that are important to me, then give me CPR. But as my health declines and CPR becomes less statistically successful, then make me a DNR. Just like many doctors, I don’t want to die by CPR. I want to die peacefully without life-prolonging medical interventions. (Doctor, please ask yourself the surprise question: Would I be surprised if Viki died during this hospitalization or died in the next 6 months? If the answer is “No, I wouldn’t be surprised,” then talk to my decision maker about end-of-life choices, including putting me on hospice.)

Reassurances for the decision maker

You are allowed to make the best decisions you can based on the circumstances and what you know at the time. You do not need to know for certain or absolutely that you have all the answers. The decision doesn’t have to be perfect. Use your heart and your head. I trust you to do the best you can. (Ed, you don’t have to go into super-perfectionist mode.)

I believe love does not obligate a person to sacrifice themselves to be the caregiver for another. The damage done to the caregiver, emotionally, physically and mentally is too costly. I do not expect someone to give up their mental, emotional and physical health for me. Look at the MetLife studies. Caregiving sucks. And I love my decision maker and alternates too much to impose such a burden on them.

(Ed, if you need some time to make peace with what has happened, then you can take the time you need. I don’t want the decision to feel rushed or uninformed, which would cause you a lifetime of regret.)

For you doctor, your role is to give my decision maker as much information as you can so he/she can make an informed decision. I encourage you to share your wisdom, guidance and experience but ultimately, it is my decision as expressed through my decision maker and this document. Remember, this document is an act of autonomy and should not be ignored by my decision maker/s, other family members, doctors or worst case, the courts. (I will definitely come back and haunt a judge who isn’t respecting my wishes.)

What is a good death in my opinion?

I would prefer to die at home but I realize that sometimes, a person needs to die somewhere else so I accept that. I would like to have my family/friends with me which includes and is limited to those I interact with on a regular basis. Those family/friends who have chosen to not be in my life while I was living should certainly not be there as I am dying. Because I like control over my life, I would like to be able to clean up my desk and to get my financial information updated. I would like to be able to write love letters, record messages and to say my goodbyes. (I will do my Go Wish Cards and leave a copy for my family.)

I would like to die with reasonable pain control. For the days leading up to the death, I would be willing to tolerate a certain amount of pain if that allowed me to have meaningful time with family/friends. But at the end, there had better be no pain and definitely, no air hunger. (That doesn’t mean ventilator support; it means manage my air hunger with medications.)

And you better not be force feeding me by mouth, by IV or by tube as that would increase my suffering. (And that includes you at the skilled nursing facility, sub-acute facility or other care community if I happen to be dying there. I know you have your regulations but I also know you can’t assault someone with food if they have said no when they had capacity.)

That’s it for now.

Viki Kind ________________________________

Date: 11/1/12

Improving the Medical Experience of the Person struggling with Alzheimer’s or other memory loss

When a person with Alzheimer’s or dementia is going to have a medical test or procedure, how can we help the person to feel less frightened and to minimize any suffering? If the patient is struggling to understand what will be happening to them, do a practice run-through and show the person the room where the test will happen. Or find a book with pictures that will help him understand what you are talking about. If the person with diminished capacity is afraid of being alone, you may want to introduce him to the nurses who will be working that day. For my dad, we tape-recorded the doctor’s explanations so he could listen to the information over and over again until he felt more comfortable.

Another thing to keep in mind is that the patient may be experiencing symptoms that affect his or her participation. These symptoms could be pain, side effects of medications, loss of hearing or sight, lack of sleep, an undiagnosed illness and grief, to name a few. Find out what can be done to relieve these symptoms to make it easier for the individual to participate in the process. Ultimately, our goal is to think about the quality-of-life questions from the person’s perspective as he or she will experience the consequences of our decisions.

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.

Stop! The plan isn’t working as expected.

Sometimes, in spite of our best efforts, the plan we designed for the person in our care, doesn’t work or stops working. 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.

We may also need to help patients/families modify their expectations when things don’t work. Sometimes people are so desperate for the plan to work that they can’t bear to see the truth when the plan fails. You are not helping your your patient by continuing treatments that don’t work. You are only subjecting the patient to needless side effects and increased suffering.

One thing you may want to try more often is a time-limited trial of a proposed treatment option. Explain to the family, “Let’s try it for a few days or for a little while and see how it goes.” This is a really great option because it helps the patient/family feel like you are trying but it also gives them a reality check when it doesn’t work. You will want to give them specific symptoms to look for, (that they can understand), so they can see with their own eyes that the plan has failed.

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 patients in the wrong direction. Take this as an opportunity to turn around and get it right.

Have a kind and respectful day.

Helping our patients get the help they need when their senses fail

The American Speech-Language-Hearing Association (ASHA) http://www.asha.org

It is so important to make sure that your senior patients get check ups for both hearing and seeing. Don’t assume that the mental changes you are seeing mean there is a brain or psychological issue. Sometimes it is a senses issue. And your patient may or may not know it is happening since it changes happen slowly over time. I didn’t realize that my dad had such poor vision until I sat with him during his eye appointment. Then I understood how much he was missing and how I needed to make sure we modified his space to help him with his visual limitations. I wish the doctor had taken a more proactive approach to helping me with my dad. Instead, he just documented what was happening and moved on to the next patient. I sure could have used his advice and guidance about what this vision loss meant to my dad and how I could help.

Language barriers also create an obstacle to getting what one needs. Unfortunately, I see healthcare professionals discount or ignore someone with speech limitations and turn to the family member instead. I know we are all rushed in medicine but we have to take a stand and say no, I am not going to rush this person through because my patient needs me. It also happens in our day-to-day life when we want someone in front of us in line to hurry up but they can’t because it takes them longer to speak.

Just because people can’t speak well or speak fast, doesn’t mean they shouldn’t have a voice in their lives. There are other ways to communicate. People can write, type, point to words or pictures on a board or sign. Many times it is just about having patience. Having the patience to sit still while the other person finds the words. And what I have found with my hospice work is that people communicate even when they can’t say a word. So, sit still and listen. You make a difference when you do.

Have a kind and respectful day.

Speaker phone, conference call or webcam your patient’s condition to their family.

Are you frustrated when the patient goes home and doesn’t follow your instructions or when the family member calls you and wants you to repeat everything you said to the patient?

A great way to solve this is to use technology. And I don’t mean fancy technology, but using either the speaker function and/or conference call feature on everybody’s cell phone. Then the loved ones can give you more information, ask questions and can listen to your update about the patient’s health and treatment plan. This is also an opportunity for you to build a relationship with the family in case the patient can’t speak for him- or herself in the future.

Using technology can be especially important in the hospital. For those who can not travel, use a laptop with a webcam to help the family see how their loved one is doing. There is nothing like seeing the person with their own eyes to help them picture what you are talking about. An image, either by webcam or cell phone picture can give the family understanding of the condition of the patient and how his or her health has changed.

Have a kind and respectful day.

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