VA Caregiver Event in Chicago on June 20

Join Viki on June 20th from 1-3pm in building 135 room 148 for a VA Caregiver Event.
3001 Green Bay Road
North Chicago, IL 60064

Empowering Caregivers Who are Facing Difficult Decisions

About the workshop:

Wouldn’t it be a relief to know you are making the right decisions and doing right by the person in your care? Whether you are caring for someone with a brain injury, dementia, mental illness, or other cognitive impairment, you can learn the framework and tools to use when making the difficult life, health and end-of-life decisions. This is not a one-size-fits-all solution but can be adapted depending on person’s level of incapacity and the situation. Respect and compassion are the core values of this decision making process.

Have a kind and respectful day.

Alzheimer’s Tennessee, Inc. Presents The 26th Annual Alzheimer’s Disease Symposium June 14-15

Viki will be speaking on June 14th at the Alzheimer’s Tennessee, Inc.
The 26th Annual Alzheimer’s Disease Symposium on June 14-15
The Clayton Center, Maryville, TN – near Knoxville

Research Symposium – Workshop for healthcare professionals
PLUS Strategies for Managing Dementia in Primary Care

http://www.alztennessee.org/

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

Families invited to Free Webinar and Live Event – November 8 – Free CEU for CCMC, NURSE AND SOCIAL WORK

Free CEU Seminar & Networking Reception
Empowering Caregivers of Dementia Patients on Tuesday, November 08, 2011
Viki Kind – Author of The Caregiver’s Path to Compassionate Decision Making – Making Choices for Those Who Can’t
5:30 p.m. – 7:00 p.m. EST

or Join via Webinar
RSVP Today at SeniorBridge.com/Seminar – Program Starts at 6:00 p.m. EST

Join Us In-Person at SeniorBridge
845 Third Avenue, 7th Floor
New York, NY 10022
Wine & Appetizer Reception Starts at 5:30 p.m.

Adults age 85+ are the fastest growing segment of our population – and half of them have Alzheimer’s. This seminar
will help professionals and families struggling to make decisions for those without capacity develop a pathway,
framework and tools for making thoughtful, ethical decisions. These tools are designed to be tailored to individual levels of incapacity and situations and to give voice to those who can’t speak for themselves. Respect and compassion will be the core values of this decision making process.

CCMC, NURSE AND SOCIAL WORK CONTINUING EDUCATION CREDITS PROVIDED BY SENIORBRIDGE*
Nurse contact hours pending by State of Florida Nursing Board for RN, ARNP, CNS, LPN. Social Work credits
pending by State of Florida Social Work Board for LCSW, LMFT, LMHC.
CCMC credits pending by the Commission for Case Manager Certification.
*Professionals should confirm acceptance of CCMC & Florida State approved CEUs with their licensing board.
For more information, email webinars@SeniorBridge.com or call 212-994-6153

Have a kind and respectful day.

Join me at the Texas NASW – National Association Of Social Workers on Oct. 8

Join me at the Texas NASW – National Association Of Social Workers on Oct. 8. I will be speaking at 2:15. http://www.naswtx.org

Founded in 1957 the National Association of Social Workers (NASW) is the largest organization of professional social workers in the world, with over 155,000 members in 55 chapters. The Texas Chapter, with about 5,700 members, is the major professional social work organization in the state. NASW is committed to advancing professional social work practice and the profession; and to promoting human rights, social and economic justice, and unimpeded access to services for everyone. Its members work in a broad range of settings including hospitals and other health care settings, community agencies, government, academia, business, nursing homes, schools, and private practice.

The Chapter office is located at 810 W. 11th Street, Austin, Texas 78701-2010. The staff is available to respond to member inquiries regarding social work practice, legislative and social policy issues, continuing education, licensing issues, and other informational requests.

The Chapter has numerous branches, committees and other leadership opportunities that involve members throughout the state, and better serve the social work community. These entities work on professional, social policy, and legislative issues, sponsor conferences, and provide a source of networking for members.

NASW’s goals include improving the quality of life and ensuring that the same rights and opportunities
are enjoyed by all. In addition, NASW strives to:
• Advance the quality of social work practice, improve the knowledge base required for
practice, and promote professional development.
• Promote the strength, unity, and recognition of the social work profession and the use of
standards to protect the consumer.
• Propose and promote sound public policies and programs aimed at meeting human needs
and improving quality of life.

Have a kind and respectful day.

Viki will be speaking at the Dallas Area Agency on Aging, Event SOLD OUT

Viki will be speaking at the Dallas Area Agency on Aging on October 7.
EVENT SOLD OUT

The Area Agency on Aging of Tarrant County (AAATC) is part of United Way of Tarrant County and receives funding from the Texas Department of Aging and Disability Services. For more information, call 817-258-8081 or 817-258-8082. http://unitedwaytarrant.org/

Our Mission
To be the visible leader and advocate in the creation and delivery of services that promote empowerment, independence and dignity for older citizens, persons with disabilities and caregivers.

Medicare Enrollment Counseling
Medicare beneficiaries have the opportunity to choose their prescription drug and health plans during the Medicare open enrollment period October 15 to December 7, 2011. Whether you are new to Medicare or changing plans, you can receive free one-on-one counseling from a State-certified benefits counselor by calling United Way’s Area Agency on Aging of Tarrant County at 817-258-8125. If you have limited income and resources, you may be eligible to receive extra help with your Medicare prescription drug expenses. Counseling is available to both Medicare beneficiaries and their caregivers.

Have a kind and respectful day.

I will be at the Fearless Caregiver Conference in Boca Raton on Thursday to receive the 2011 Caregiver Friendly Award my book just won!

THE CAREGIVER’S PATH TO COMPASSIONATE DECISION MAKE: Making Choices For Those Who Can’t IS THE WINNER OF THE 2011 CAREGIVER FRIENDLY® AWARD FROM TODAY’S CAREGIVER MAGAZINE.

Today’s Caregiver, the first national magazine for all family and professional caregivers, and caregiver.com announce the 2011 Caregiver Friendly® Award recipients. The Caregiver FRIENDLY® Awards are designed to celebrate products, services, books and media created with the needs of caregivers in mind.

About The Caregiver Friendly Awards:
Caregiver Friendly® Awards are presented by Today’s Caregiver magazine to celebrate outstanding books, media, products and services designed with the best interest of the family caregiver in mind. Today’s Caregiver, launched in 1995, is published by Caregiver Media Group, which also produces the Fearless Caregiver Conferences, www.caregiver.com and The Fearless Caregiver book, which teaches caregivers how to become their loved one’s fearless advocates within the healthcare system.
http://www.caregiver.com/caregiverfriendly/2011/2011_winners.htm

“The average caregiver is responsible for over $40,000 in health related expenditures each year, in either personal or directed funds,” says Gary Barg, Today’s Caregiver editor-in-chief. “This award is designed to help family caregivers recognize and reward those organizations who will care for them in as committed a manner as they care for their loved ones.”

Fearless Caregiver Conference in Boca Raton, FL
Thursday July 14, 2011
8:00am – 2:30pm
Family Track and Professional Track with CEUs
Embassy Suites Hotel
661 NW 53rd Street
Boca Raton, FL 33487
http://www.caregiver.com/fearlessconference/index.htm
Have a kind and respectful day.

Join me in Portland on June 30th – Sponsored by AARP, Multnomah County Family Caregiver Support and Providence Home Services

AARP, Multnomah County Family Caregiver Support and Providence Home Services invite you to attend the program:

“Empowering Caregivers Who Have to Make Difficult Choices”
Thursday, June 30th
7:00 pm
Providence Cancer Center Auditorium
4805 NE Glisan—Portland
Doors open at 6:30 – Lecture begins at 7PM
The event is free, but space is limited. Please rsvp to:
http://aarpor-empowering-caregivers.eventbrite.com/
or call 503-988-3646

5 Stars!!! – National Book Critic Review Just In

THE CAREGIVER’S PATH to COMPASSIONATE DECISION MAKING: Making Choices for Those Who Can’t
2nd Edition Available ONLY at Barnes and Noble – ebook and print book

“From the front cover which shows two hands in the shape of a heart holding a rock which is also in the shape of a heart, THE CAREGIVER’S PATH to COMPASSIONATE DECISION MAKING: Making Choices for Those Who Can’t no doubt is a rock size lump in the throat to all who deny they will eventually need this book.

THE CAREGIVER’S PATH to COMPASSIONATE DECISION MAKING is a great book and a KIND tearjerker too! Where no tomorrow is guaranteed, our loved ones might get to where they are without full faculties and can?t answer the questions or direct others to who they want to answer questions in their best interests or have documentation which represents such and their convictions. Author Viki Kind?s mastery is in getting the reader through the battling of keeping one?s composure to making the tough choices when a loved one whose outlook is tainted from dying needs support. The fourteen chapters could stand alone, each as a teaching tool, for care givers.

The first part of the book concerns medical decisions and the second part concerns death. “Did I matter?” is a heartfelt question no one wants to be unable to answer at the destination life holds. Anyone with a heart will see through watery eyes reading Author Viki Kind’s The Journey Through The Early Days of Dying and The Final Days of Dying. Kind?s step-by-step process for caregivers to use is simple: 1) a decision making framework of 2) Shared Decision Making Model 3) Sliding Scale for Decision Making 4) The Assent Tool Author Viki Kind provides an authentic knowing voice on the necessities of a compassionate outlook on the growing problem. It is a problem now affecting the whole mass of baby boomers seeking and searching for these very same tough questions and one day will too be faced with the bittersweet answers because they get one to fess up to mortality?s limits, timeliness of determining a loved one’s competency and capacity, and the need to at least have an understanding enough to lead one to valid choices.

Baby Boomers of late are that aging escapes no one. In regencies of “60 is the new 50,? that only goes so far in winning but a mind game not the war of health and longevity. Sooner or later there is no candy-coating that 100 is not the new 90 because that is a mute point; most don?t make it to that age. Likewise, in the best interest of loved ones is this “tell it like it is,? pull no punches, optimal reference guide as a companion to those readers during the tough times they will eventually face; when a test of courage and on what basis the most difficult medical decisions are made. Unequivocally, then the answer to “Did I matter?? is answered by actions of the caregiver and is brought into the present tense. Meaning that, that is when author Viki Kind’s book, and its bittersweet bread and butter and not a lot of fluff, go a long way into making that very last release of a loved one’s grip from your hand be one in which you knew you did the best you could (do) until the end. THE CAREGIVER’S PATH to COMPASSIONATE DECISION MAKING: Making Choices for Those Who Can’t is a rare find with great merit worth (and worthy of) holding onto the rest of one’s life.”

Salvador SeBasco Literary Director and host of THE INSIDE VIEW SHOW (TM) BROADCAST book critic, on staff with a CNN affiliate station.
April 10, 2011

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