Laura Bramly, “Getting Alzheimer’s Diagnosed Early” on Oct. 6th, 9AM pacific

Laura Bramly, “Getting Alzheimer’s Diagnosed Early” on Oct. 6th, 9AM pacific.   Call in to listen live at or listen online at blogtalkradio.com/kindethics.com

Laura lives in Gilbert, Arizona with her husband and two children.  Her mother died at age 87 of vascular dementia in June 2008.  Her mom had been losing her short term memory for at least 7 years before that, but refused to be properly diagnosed.  Her mom had a major stroke in 2006 and lost most of her short term memory abilities, along with use of her legs and one arm. Laura had one week to find a nursing home.   Her mom was moved to the memory care unit of the facility in January 2007.

Laura created the book Life Scenes 1 out of desperation for a stimulating cognitive activity for her mother.  She liked to look through coffee table books and Laura would tell a story about each photo. These books were cumbersome and had no discussion questions for the weary mind who just can’t think of another thing to say to make conversation. So Laura created her own book with photos, large text and discussion questions. The book has many “access points” so that the reader can connect with the book in the way that appeals to them and their abilities best.  Laura was able to read the six-page prototype with her before she died and they spent a wonderful hour just going through those pages. The book was published in November 2008 (self-published) and Laura is putting together the next one: Sports Scenes. The book is a cognitive activity; it stimulates the ability to read (which many people think is lost when in fact it’s just that the reader can’t take in all of the information on the page or can’t read the small print, gets frustrated and gives up) and provides material for discussion and reminiscing.

Laura is a member of Aging With Grace’s (www.agingwithgrace.net) “Ask an Expert” panel. People can contact us for a free consultation on such topics as Alzheimer’s, senior strength-building, insurance, reverse mortgages, care situations… it’s quite diverse!). She is focusing in on diagnosis and activity, and living with dementia.

Laura’s blog:  http://eldercaretalk.blogspot.com

You can purchase Laura’s book on her website:   http://www.eldercareread.com

Have a kind and respectful day.

Cultural Communication Strategies, KindEthics Newsletter vol. 2

Quote of the Day:

Arguing is really saying, “If you were more like me, then I could like you better.”

Feature Article:

Cultural Communication Strategies

What I want to talk about today is the role of culture in our interactions both inside the healthcare system as well as in our daily life. What I want to focus on is our role in dealing with people from different cultures, religions and belief systems. So often we blame others as they are the problem or that they are making it worse when sometimes it is us. Today, I want to empower you to know that you can make a difference and you can make the interaction better. The communication strategies I will teach you will help with difficult relatives or co-workers as well as with your patients. For the next two paragraphs I will focus on the healthcare professional and then after that, everything I will discuss will be helpful to all of us.

Why should we be culturally aware in healthcare? When we ask questions about cultural and religious beliefs we can discover what treatments people are receiving outside of our care. Are they going to a healer, an herbalist, a shaman, an acupuncturist or someone else outside the healthcare system? If so, we need this information in order to protect them from harmful interactions with the treatments we are prescribing. We don’t have to like that they are going to see these people, just realize that they are. You can think what you like but be careful not to criticize them aloud because they will just hide the information from you in the future. If your patient is afraid to tell you the truth about alternative medicines, they may be in danger when they go into surgery.

We also want to know what their values are and how that affects their ability to choose the medical treatments we are offering. Many non-compliant patients are being non-adherent for very good reasons; reasons that are prescribed by their culture or religion. We don’t have to agree with their beliefs but it is important that we understand them so we can work together to find a way to get them to accept at least some of what we are offering them. And at the end of life, we definitely need to ask about how to respect their religion and culture during the dying process.

The most important reason though to be culturally respectful is because we’ve would want to be respected if we were the patient. It is very likely that your own doctor will be from a different religion or culture and you may find yourself in a cultural conflict as well. I would advise you to use “The Platinum Rule®” instead of the golden rule. This states that we should treat others as they wish to be treated, not as we would wish to be treated. (I have attached this article at the end of this newsletter.)

All cultures teach their members the preferred or right way of doing or being. We are each brought up in a family that teaches us the right way to behave. And because this training happens when were so young, we believe that what we’ve been taught is “normal” and “natural” and “right”. I am a Norwegian American, so what I believe is normal, natural and right is based on Norwegian values. So what I believe is normal and what you believe is abnormal. Yes, I just said that. Your beliefs are unnatural and not right unless you believe like I do. Of course this statement is ridiculous. This is a perfect example of the cultural anthropology concept of ethnocentrism. Ethnocentrism is the belief that the customs and practices of one’s own culture are superior to those of other cultures. With ethnocentrism in place, it will increase the differences between us and it will lead us to us versus the “other” thinking. The concept of the “other” is described as the “other” as being less than, less valuable or less intelligent. One might say, “There’s us and then there’s you, the other” in a derogatory manner. We need to realize that one culture is not better or worse, just different. If we were brought up in that other country or culture or religion, we would believe as they do. It just depends on where we were born. I know that there are valuable ideas and values to be found in all cultures even if they’re not exactly like mine. We all want our children to grow up and be happy and healthy. We all want to be able to pay our bills and to provide for our family. We are more alike than different. I encourage you to look for the positive similarities and focus on those during your interactions.

Most people who teach cultural sensitivity would tell you to not judge. I wouldn’t say that. I think it’s normal to make judgments and to have opinions. But we need to figure out how to acknowledge our judgments, then put them aside and not act on them, especially as professionals. Many times I walk into a situation and have a strong reaction to a person but I have to manage that reaction and rise above my bias or first impression. If you feel a judgment or criticism rise up in you, acknowledge it silently and then put it aside and treat the person with compassion and respect. You don’t have to agree with the person, just treat them well. Advocate for them as they may be vulnerable and unable to speak up for themselves because of the cultural or religious barriers. I tell healthcare providers that when you’re about to walk in the exam room or the hospital room, leave your biases or negative expectations outside the door and remember that this person still needs our expertise and support. We can do this anytime we are in an interaction which is getting us upset. We can control our actions and our words during the interaction.

Quite often people are experiencing “relocation stress” during their healthcare experience. Cultural anthropology defines “relocation stress” as the stress one feels when moving from one culture into another culture. Medicine is a culture. It has its own cultural rules, values and a hierarchy for communication. When people come into the healthcare system, unless they work in healthcare system, they don’t know the cultural rules and how to get what they need. And this creates stress on top of the stress they are experiencing about their illness or pending surgery. If you are new to the healthcare process, like my dad was when he went in for double bypass surgery, you need to ask more questions and bring an advocate with you.

So what can we do when we have to deal with people from cultures that we don’t understand or we don’t like. I’m here to tell you, you have a lot of power. Your expectations will affect the interaction. You may have something from communication theory called “selective perceptions”, which is where we only see what we want to see in order to justify our preconceived opinions. Let me give you an example. I have a relative I don’t like. (You probably do too.) Every time I interact with her, I look for things that will reinforce my belief that I don’t like her. So each time, I would find more and more things that confirmed this belief about her. And over time, my dislike grew. Well one day, I realized that I teach other people to have more power over their interactions, so maybe I should put it to the test. (I know, I should have done this a long time ago.) So the next time I interacted with her I looked for something positive about her. I found out that I really respected how well she feeds her children. She feeds them very healthy food and they willing eat it. As I left that interaction, I focused on the positive thing I had found about her and reinforced this new perception as I drove home. Each time I looked for and found more and more things to appreciate about her. Is she ever going to be my favorite person? No. But now I see her differently and in a more balanced and compassionate manner. Just like all of us, she has a combination of good and bad qualities.

The next communication concept I’m going to tell you about is the “halo effect” and the “reverse halo effect.” This is one of my favorites. If you see one positive thing about a person, you will then assume that everything about this person is positive. Or if you see one negative thing about a person, you will then assume that everything about them is negative. We see this with teenagers who begin dating. They will say, “He’s perfect or she’s perfect.” Well, you and I know that nobody’s perfect, but the teenager sees this person with the halo affect and don’t see that the person they are dating are a combination of good and bad qualities. And when we try to tell them differently, they defend that person. They are a victim of the halo effect. The same thing happens when we meet someone from a culture which we don’t like. We use the reverse halo affect and assume that just because they’re from a certain culture, we won’t like them. This is all or nothing thinking and it will get us into trouble. We need to see people as a balance of positive and negative characteristics. Even if there is something you don’t like about a particular culture or religion, it doesn’t have to dictate the whole picture of how you see the individual person. (There are plenty of people I don’t like, but you would never know it as I put aside my opinions and just treat people well.)

One more concept that comes into effect in our daily life is the concept of the “self-fulfilling prophecy”. This is when our negative expectation may lead to us to create that which we didn’t want to occur. Let me give you an example. Every time you go to work, there is a person there that annoys you. (And lots of people annoy me so I can relate.) So when you walk in, you greet everybody warmly but ignore that one person. Or maybe you greet them but choose to greet them in a cold manner. Then you are surprised when the person reacts to you and says, “Have a nice day” with a hostile attitude. This is when most of us will say, “See, look at them they’re always being rude.” But who really started it that day? You did by your attitude and the way you started the interaction. I would challenge you to try another way. The next time you go into work and interact with this person, I would encourage you to greet them warmly with a smile and say something personally kind. This person may be shocked and not know how to react, but over time, they will begin to warm up and your relationship will get better. It may not happen immediately, but if you stick with it, chances are it will get better. Of course it may never be perfect, but I could settle for better. How about you?

One final technique we can use is to realize that things may not always be as they may appear. We may have misunderstood or misperceived the situation. We may be wrong. We need to remember to allow in new information even if it contradicts your stereotype.

In fact, I would encourage you to look for information which breaks your stereotype. Challenge yourself to learn more about the group that you are uncomfortable with or dislike. You may be surprised how much good you can find in them. I would also caution you to be aware of relying on first impressions. Many times we meet people when they are in a crisis or in grief or are overwhelmed by their life. We need to treat them gently, as we would want to be treated if we were in a crisis. An example of this is the patient who comes to the front desk to check in for their appointment and is rude to the receptionist. My first assumption would be that this guy is a jerk. But I know better and don’t jump to that conclusion. (I try not to make assumptions or jump to conclusions because many times I am wrong because I don’t have enough information.) I realize that there might be something going on in his life that I don’t know about. Maybe his wife just died. Maybe he just found out that his son has cancer. Maybe he was just in a car accident. All I know about him is that in spite of his rudeness, he needs my care and support. I also find that when I treat people well and in a caring manner, their rudeness or anger dissipates and interaction goes better. When I treat them better, it gets better. People laugh at me when I say, “Happy Monday” when I come into work or go through the security gate at the airport. But I know that I’m setting a tone and trying to be a positive part of their day. Over time, I have seen offices change their attitude from negativity into optimism, just because I kept saying, “Happy Monday.” Again, I have power over these moments. I can make things better or worse depending on what I bring to the interaction. I have this power and I choose to use it. So can you.

Have a kind and respectful day.

Detailed article describing “The Platinum Rule®”:

What is “The Platinum Rule®” ? Let me tell you how it differs from the Golden Rule. The Golden Rule, which is found in almost every religion says, “Treat people as you would like to be treated or Do unto others as you would like to be done unto.” The Platinum Rule is even better. It says, “Treat people as they would like to be treated or Do unto others as they would like to be done unto.” It is actually a more respectful way of treating people. The Golden Rule assumes that everyone is the same and would want exactly what you would want. But we aren’t alike and we can get into trouble making this assumption. Let me give you an example.

When someone you know has died and people want to give you comfort, “Do you want people to hug you or do you prefer people to not touch you?” Well, I am a hugger so if I use the Golden Rule, then I am going to hug you whether you like it or not. But if I use the Platinum Rule, then I am going to ask you if you could use a hug and depending on what you tell me, I will respect your answer.

The Platinum Rule works really well in America. We are all different. We have different religions, cultures, values and basic preferences. What I personally believe in is respect. Therefore, I will ask how you like to be shown respect and try to honor it. That is why if you tell me you don’t want to have surgery, even though you might die without it, I will respect your answer. I won’t agree with it but it is not my body that has to go through the experience. It is yours. And you are the only one who can say what is right for your life and your body. Now I might ask you if you would consider changing your mind because I don’t want you to die, but ultimately, it is your decision.

I will respect you and I hope that you will consider asking me how I like to be shown respect too.

Have a kind and respectful day.

The Platinum Rule® is a registered trademark of Dr. Tony Alessandra. Used with permission. All other rights are reserved in all media.

Interview with Linda Watson, author of “Facing Death” on Oct. 1st, 9AM pacific

Linda Watson, author of “Facing Death” on Oct. 1st, 9AM pacific. Call in to listen live at (347) 945-5152 or listen online at blogtalkradio.com/kindethics

Linda Watson, M.R.E., M.Div., Th.M. the author of a beautiful and profound book to help facilitate end of life conversations called, Facing Death, A Companion In Words And Images.

As a former pastoral and supportive care professional, Linda Watson found herself drawn, again and again, to work with the dying and the bereaved. With degrees from the University of Calgary, McMaster University in Hamilton, ON, and the University of Toronto, Linda worked in parish ministry and later as the Peer Support and Supportive Care Coordinator of a breast cancer resource centre in Winnipeg, MB. Where others sometimes kept their distance, Linda moved in close and became a trusted companion of the dying and their loved ones on many occasions. She learned at least some of the questions to ask, some of the silences to leave hanging, and some of the words to offer when it was time. Her counseling and theological training, plus the experiences life provided her, combined to assist her in being a positive presence at bedsides and elsewhere with those facing death.

It was an event in her personal life, however, that moved her to put some of the wisdom she had gained in the context of these experiences down on paper. Her sister, who had been battling cancer for a few years, was suddenly given 6 weeks to live and Linda was too far distant to be there in the ways she desired. Writing down kernels of wisdom and quotations she knew would be helpful to her sister led eventually to the compilation in this volume, one that has been tested now by others and evaluated favorably by other professionals in the field of end of life care.

The challenge of preparing for one’s own death is enormous. Facing Death: A Companion in Words and Images book by Linda Watson It is difficult to overcome one’s own reluctance to talk about death and dying — let alone the fear of family and friends — and yet it helps the process for the words to be shaped. In addition, in the final stages of life, the endurance for study is limited but the need for meaningful content is very great.

The morsels of wisdom and comfort in Facing Death, along with the beautiful, accompanying nature photographs, address these needs. Throughout, this book allows readers to make their own sense of what is presented, to access what is offered in their own fashion, to identify particular items for frequent re-visiting, to personalize and customize, if and as they wish.

Facing Death understands death to be, though unwanted in most cases, an inevitable and normal part of life. The book presents death in this way but draws attention to the process of life, in all its heartache and glory.

www.authorlindawatson.com
http://www.healthpropress.com/store/watson-29487/bio.htm

Have a kind and respectful day.

Are you treating your loved one like a “Third Party Patient”?

When you take your loved one to the doctor’s office, are you making sure that you are keeping the person with diminished capacity involved in the office visit? Too often, the doctor starts talking to the patient’s family or caregiver and forgets that the patient is in the room. Or sometimes we forget that our loved one is still here and begin to make all of their decisions for them. This is what is called, “Making the person a third party patient.” It is seems like the patient has become invisible.

I know this has happened in my family. Many times, my dad’s doctor would ask me in front of my dad, “How is your dad feeling today?” Then I would say, “I don’t know, ask him.” Or when I would take my aunt, who was in a wheelchair, out for lunch, people would say to me, “What would your aunt like to eat?” And once again I would say, “I don’t know, ask her.” We have to remind people that our loved one is still here. Even if the person has lost some of their ability to think and communicate, that doesn’t mean that he or she shouldn’t be included. Yes, the person with diminished capacity will not be making the final decisions about medical treatment choices, but the individual can still voice his or her opinion.

I know that it may not be easy and it may take more time, but we need to keep the person included. The person deserves our attention and our effort. Face the patient, ask the person questions and be patient when waiting for the answer. Explain to the person what will be happening to him or her in language that can be understood. It is important to include the person for as long as possible and when it is safe to have them have a voice in the decisions.

Have a kind and respectful day.

Stopping the “Third Party Patient” problem.

When a person with diminished capacity comes in for an office visit, do you remember to include the person in the conversation or do you take the easy way and just talk to the patient’s family or caregiver? Unfortunately, sometimes we forget that patient is still there and allow the caregiver to speak for them. This is what is called, “Making the person a third party patient.” The patient losses his or her own voice and becomes invisible to the healthcare professional and the caregiver.

I know this has happened in my family. Many times, my dad’s doctor would ask me in front of my dad, “How is your dad feeling today?” Then I would say, “I don’t know, ask him.” Or when I would take my aunt, who was in a wheelchair, out for lunch, people would say to me, “What would your aunt like to eat?” And once again I would say, “I don’t know, ask her.” We have to remind people that our loved one is still here. Even if the person has lost some of their ability to think and communicate, that doesn’t mean that he or she shouldn’t be included. Yes, the person with diminished capacity will not be making the final decisions about medical treatment choices, but the individual can still voice his or her opinion.

I know that it may not be easy and it may take more time, but we need to keep the person included. The person deserves our attention and our effort. Face the patient, ask the person questions and be patient when waiting for the answer. Explain to the person what will be happening to him or her in language that can be understood. It is important to include the person for as long as possible and when it is safe to have them have a voice in the decisions.

Have a kind and respectful day.

The Pajama Story

The Pajama Story

My friend, Gail, told me the most touching story the other day. A lovely lady was a devoted and loving wife to her dying husband. She did everything for him at home but as the end neared, she had to admit her husband to an inpatient hospice facility so he could get more help managing his symptoms. This ended up being the best thing for both of them. She told my friend, that because there were other people to take over the care of her husband, she was finally free to put on her pajamas, crawl into bed beside her husband and spend his last three days with him as his wife, not his caregiver. It was the first time in months that she could stop and reconnect with the love of her life.

I cried when I heard this. So often we get caught up in the caregiving that we forget that we are an important person in this individual’s life and that they are important to us. Our loved one is not a body to be turned or fed or cleaned, but the person we love.

No matter what stage you are in during the caregiving process, take a moment to remember the love when you are caregiving. You may not have forever, so do it today. Put on your pajama’s and remember why you have devoted yourself to this person. These are precious moments not to be wasted.

Have a kind and respectful day.

Lorry Schoenly, PhD, RN, CCHP, “Healthcare Behind Bars” on Sept. 28th, 1PM pacific

Lorry Schoenly, PhD, RN, CCHP, “Healthcare Behind Bars” on Sept. 28th, 1PM pacific. Call in to listen live at (347) 945-5152 or listen online at blogtalkradio.com/kindethics.

Dr. Lorry Schoenly is Clinical Education Manager for one of the largest companies providing healthcare services in jails and prisons across the country. She is a registered nurse who advocates for professional nursing practice in corrections and hosts a blog site www.correctionalnurse.net . She has authored a variety of articles about nursing in jails and prisons and is a frequent speaker on correctional nursing topics at conferences and other venues.

Dr. Schoenly is also a freelance writer, editor, and instructional designer – providing consultation services on issues regarding correctional healthcare. The views, opinions and information she expresses here are her own. They are not designed to represent those of her employer or any professional or educational affiliation.

Follow her on twitter at www.twitter.com/lorryschoenly. Friend her on Facebook at www.facebook.com/lorryschoenly Catch her full bio on www.linkedin.com/in/lorryschoenly Blogging @ www.correctionalnurse.net

This week is National Invisible Chronic Illness Awareness Week – September 14-20

I think about my niece and how nobody can tell she is suffering. She has Still’s Disease and some days, she looks just fine. But that isn’t what her body is saying. Her body is screaming in terrible pain, with raging fevers and a weakness that stops her from even lifting her arms. But you might not be able to tell unless the day you see her is one of her wheelchair days. I didn’t realize how bad it could get until I traveled with her. At the beginning of the day, she will be doing okay. Then as the day wears on, the symptoms ravage her body.

She is an example of what the Invisible Chronic Illness Week is about. We can’t tell from the outside what is going on inside for people. People with chronic illnesses still go about their day and still have to live their life. They have gotten used to coping. But that doesn’t mean that they aren’t suffering. They are just doing what they have to do to take care of their kids, provide for their families and keep the household going.

We need to be tender with people. You can’t assume anything about people because you aren’t inside their body or their life. People put on a brave face because they have to, not because they want to. The next time you see someone who is being grumpy or who is slow to get out of your way, remember that they may be doing the best they can. This may be the best day they have had all year. Or maybe today is their worst. We need to choose to be compassionate, polite and understanding. There may come a day when we will need someone to be gentle with us.

Thomas Gressman, “Assistive Technology for those with Disabilities” on Sept. 24th, 9AM pacific

Thomas Gressman, “Assistive Technology for those with Disabilities” on Sept. 24th, 9AM pacific. blogtalkradio.com/kindethics

Thomas Gressman is an Assistive Technology Specialist from the Three Rivers Center for Independent Living. Thomas is part of the Assistive Technology Department. The Three Rivers Center is one of many Centers for Independent Living in the US. TRCIL is a not-for-profit organization which provides services to people with disabilities in SW PA. Assistive Technology is one of those services. AT is defined as any device, or system of devices which helps a person with a disability accomplish a task. These can be very low-tech to very high-tech.

Their goal is to help people with disabilities live independently in the community setting of their choice by providing consumer controlled supports and services. Their services include Advocacy, Assistive Technology, Waiver programs, Housing, Deaf and Hard of Hearing services, Nursing Home Transition, Peer Support, Skills Training, Personal Assistance and Transitioning. The website is www.trcil.org

Other resources include:

Harris Communications www.harriscomm.com A good starting point for assistive devices for the Deaf/Hard of Hearing.

ASL Expo www.aslexpo.com

http://en.wikipedia.org/wiki/Deaf_culture A good starting point for information on Deaf Culture
Hearing Loss Association of America http://www.hearingloss.org/

http://www.virtualcil.net/cils/ This site will direct people to a Center for Independent Living near them.

The Pennsylvania Initiative for Assistive Technology (PIAT) http://disabilities.temple.edu/programs/assistive/piat/

PIAT Assistive Technology Lending Library http://disabilities.temple.edu/news/newsletterAT/
Pennsylvania Telecommunications Device Distribution Program (TDDP) http://disabilities.temple.edu/programs/assistive/tddp/

Pennsylvania Assistive Technology Foundation (PATF) www.patf.us

Have a kind and respectful day.

When your loved one said to do everything, but everything isn’t possible

Dear Viki,

My father said he wanted everything done but I can’t bear to watch his suffering. It seems like he keeps getting these terrible treatment, but nothing works. The doctor keeps asking me if I think it is time to put him on hospice but I promised my dad that I would make sure the doctor didn’t give up on him. My dad is the type of person who would never give in or give up. I feel like I am supposed to do what he says, but isn’t there ever a time when I should just say, “Enough”?

I am so sorry you are in this difficult position. It must be so difficult trying to balance doing the right thing for your dad with trying to respect his wishes. The first thing I would suggest is to make sure you get better pain management for your dad. He shouldn’t be suffering while he fights his disease. Ask for a referral to a palliative care doctor. This type of doctor can help you with the healing of your dad’s suffering and get the symptoms under control.

Secondly, what you are experiencing is moral distress. This is when you are doing the right thing but it feels so wrong. I would be suffering like you if I was in your situation. For some people, there is tremendous value in the fight to the end. Not giving up is more important than the hardships that are faced along the way. But this can put a tremendous burden on the person having to make the decisions and to witness the results of these choices. One of the most difficult situations is when the person asks us to advocate for things we don’t agree with. The thing you have to realize is that this is your dad’s life and health. This is how autonomy works. People have the right to make bad decisions. And you have to be brave enough to do right by your dad.

The answer to your question:

Here are your obligations. Since your dad told you that he wanted to fight to the end, then that is what you should try to do. But that doesn’t mean you have to keep choosing to do things that don’t work. If the treatments are only causing suffering and are not helping your dad, then you are not obligated to continue with that plan. You are supposed to fight for the medical options that will actually benefit him. Talk to the doctor and tell him it is time for a new plan for your father. Anytime a plan stops working, we have to face it and make a new plan. If there is nothing new that the doctor can offer, then that is when you can say enough. And now your work begins as you advocate to get him the best end of life care that you can. Change the “do everything” that you have been focused on during the fighting process into a “do everything” to fight for a pain-free and peaceful death. Don’t think of this as giving up, think of this as fighting for a new goal.

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