tag:blogger.com,1999:blog-10741515679562584702024-03-12T15:03:55.539-07:00The Lewy Body RollercoasterLewy body dementia, Lewy body disorder, Parkinson's disease, dementia, mixed dementiaThe Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.comBlogger480125tag:blogger.com,1999:blog-1074151567956258470.post-87307221559529500452021-02-05T05:00:00.001-08:002021-02-05T05:00:03.274-08:00Dementia Alliance Zoom Conference Coming Up
I'm working hard on developing a couple of presentations for the Dementia Alliance Zoom Conference on Managing Dementia-Related Behaviors on the 10th and 11th of this month. Be sure to register even if you can't attend live. All registrants will receive instructions for accessing the recorded sessions and handouts with some good references. The advantage of attending live is that we will have a panel session where you can ask us questions, but if you can't be there you can still get the benefit of what others ask and listen to the recorded presentations.<div><br /></div><div>See my 1-22-21 blog for more information about this free conference. With Pat Snyder and Dr. Trey Bateman and myself as speakers, it should be a conference worth attending...especially when you can do it at your leisure by registering and obtaining the recordings and handouts. I'd recommend both...attend as much of the two days live as you can and catch up with anything that you missed later when you view the recordings. Oh, and did I mention that it is FREE?</div><div><br /></div><div>In the meantime, I probably will not be blogging until the 19th. </div><div><br /></div><div>For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br /><br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.</div>The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-10555887552075989062021-01-29T05:00:00.000-08:002021-01-29T05:00:05.288-08:00What I've LearnedThis was posted on Facebook by a man in his mid-70’s. I think caregivers might be able to take some of his ideas to heart as well! I've added some comments to each one.<div><ul style="text-align: left;"><li>After loving my parents, my siblings, my spouse, my children and my friends, I have now started loving myself. <i>(So easy to forget when you are so involved with providing care, but it is a MUST DO for healthy, safe caregiving!)</i></li><li>I have realized that I am not “Atlas”. The world does not rest on my shoulders. <i>(And I don't have to be perfect either!)</i></li><li>I stopped telling the elderly (<i>anyone!</i>) that they've already narrated that story many times. The story makes them walk down memory lane & relive their past. <i>(Ah, yes, reminiscing is a great mind exercise!)</i></li><li>I have learned not to correct people even when I know they are wrong. The onus of making everyone perfect is not on me. Peace is more precious than perfection. (<i>This is one that LBD care partners must practice often with their loved ones with a different reality. We say "Do you want to be right or do you want to be peaceful?</i>)</li><li>I give compliments freely & generously. Compliments are a mood enhancer not only for the recipient, but also for me. And a small tip for the recipient of a compliment, never, NEVER turn it down, just say "Thank You.” <i>(This is another one that care partners can practice often for wonderful results.)</i></li><li>I have learned not to bother about a crease or a spot on my shirt. Personality speaks louder than appearances. <i>(Perfection again, and how it isn't all that helpful!)</i></li><li>I walk away from people who don't value me. They might not know my worth, but I do.<i> (This can work with a contankorous loved one too. Walk away and return and usually the air will have cleared!</i>)</li><li>I remain cool when someone plays dirty to outrun me in the rat race. I am not a rat & neither am I in any race. <i>(When your loved one accuses you of something you didn't do, speak to their emotions in their reality and apologize. But then, let it go--don't own the hurt of their accusation.)</i></li><li>I am learning not to be embarrassed by my emotions. It’s my emotions that make me human.<i> (Caregiving is stressful and emotions often come to the surface. Let them come--but choose to express the negative ones away from your loved one unless you want them tossed back at you three-fold!)</i></li><li>I have learned that it's better to drop the ego than to break a relationship. My ego will keep me aloof, whereas with relationships, I will never be alone. <i>(Caregivers learn to do this when we drop our need to be right and accept our loved one's reality as the only one where we can communicate.</i></li><li>I have learned to live each day as if it's the last. After all, it might be the last. <i>(We know this better than most!)</i></li><li>I am doing what makes me happy. I am responsible for my happiness, and I owe it to myself. Happiness is a choice. You can be happy at any time, just choose to be! <i>(Caregiving may not have been what you would have chosen to make you happy, but you CAN choose to be happy and to find little things to be grateful for each day.)</i></li></ul>For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br /><br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.</div>The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-50523491493758667172021-01-22T05:00:00.003-08:002021-01-22T05:00:05.704-08:00FREE Zoom Conference on Behavior Management<p>The Dementia Alliance of North Carolina is presenting a two
day Zoom conference on behavior management on Feb. 10 and 11 from 11 to 2:30
each day. <a href="http://www.DementiaNC.org/LBD2021" target="_blank">Click here for more information.</a></p>
<p>The conference is in honor of Dr. David Kaufer, a
very Lewy-savy neurologist who passed away last year. Dr. Kaufer was a mentor for Pat
Snyder, author of Treasures in the Night, a very good book about making the early
stages of LBD last as long as possible. Pat will be one of the speakers and I
will be as well. Dr. Trey Bateman, who worked with Dr. Kaufer, will
be the third speaker. It should be a conference well worth taking the time to
view.</p>
<p>The conference was going to be held in North Carolina with
an audience limited to those who could attend physically. However, Covid changed
this as it did so many other events. But that’s not so bad in this case. Now, with
a virtual Zoom conference, we are able to make the information available to
anyone who wants to watch!</p>
<p>The three of us will present our different takes on a single
subject: management of dementia-related behavior, with a focus on awareness
(learning all you can about the disease and how it causes the behaviors),
attitude (how you think and feel about the behaviors) and actions (what works
and what doesn’t and why). Although all three of us have strong LBD-related
backgrounds, the Dementia Alliance addresses all dementias and so does this
conference.</p>
<p><a href="http://www.DementiaNC.org/LBD2021" target="_blank">Click here to register</a> for this FREE conference or to just
learn more about it.</p>
For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br /><br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-56478516124665109862021-01-15T05:30:00.005-08:002021-01-15T05:30:01.875-08:00Recovering from Covid, Pt. 2
<div>Last week’s blog was about using activity and posture to assist you or your loved one to recover from a bout of Covid. It and this week’s blog are based on a list about “fighting Covid at home” that was circulated online by a woman who was sent home from the hospital to recover. It is important to note here that these blogs are NOT about preventing Covid, but about assisting the recovery <i>after it been identified and treated. </i>This week’s blog is about diet and nutrition. As I did last week, I have crossed out those items unsupported by science and added my own comments in italics.</div>
<ul>
<li>Eat at least 1 - 2 eggs a day, plus bananas, avocado and asparagus. These are good for potassium. <i>(Good foods to eat anytime. While potassium does not prevent infection, it does promote recovery.)</i></li>
<li><strike>Do not drink anything cold - have it at room temperature or warm it up.</strike> <i>(There is a notion that cold water may cause lungs to become scarred. There is no evidence to support this claim.)</i></li>
<li>Do drink lots of fluids. Water with lemon, and little honey, peppermint tea, apple cider are good suggestions for getting in fluids. <i>(Staying hydrated is important for maintaining good health and for supporting your immune system.)</i></li>
<li><strike>No milk products.</strike> <i>(<i>Milk products are good sources of nutrition. </i>Although once thought to create more phlegm in the lungs, they do not. They do make existing phlegm thicker and more irritating, in which case they are best avoided just until the phlegm goes away.)</i></li>
<li>Drink a smoothie of blueberries, strawberries, bananas, honey, tea and a spoon or two of peanut butter. <i>(Antioxidants, a natural sweet and a little protein--all healthy foods that will help to boost immunity. Use green tea for an even greater immune boost.)</i></li>
</ul>
<div>The doctor also recommended the following supplements and drugs. Brand names are shown but you can buy generics for most of these items and they will usually be just as good--and much less expensive! Be sure to check with your doctor before using any of them. Normally you might not do this for yourself, but if you are already recovering from Covid, you and your doctor need to be on the same page. <i>Don’t take anything that hasn’t been approved.</i> And of course, Covid or not, check with your loved one’s doctor giving them to your loved one.</div>
<ul><li>Sports drinks with electrolytes (Pedialyte, Gatorade Zero, Powerade Zero) to prevent you from becoming dehydrated. <i>(Electrolytes help your immune system recover from Covid but drinking them will not prevent it.)</i></li>
<li>Vitamin’s D3, C, B, Zinc, Probiotic One-Day are good ideas. <i>(As above, these all support your immune system as you recover from Covid but they will not prevent it.)</i></li>
<li>Acetaminophen (Tylenol) for fever.<i> (An old favorite and fairly safe, used sparingly.)</i></li>
<li>Guaifenesin (Mucinex) for drainage, plus helps the cough. <i>(Avoid giving your loved one those with additional ingredients such as Mucinex DM. They can cause problems with LBD.)</i></li>
<li><strike>Famotidine (Pepcid) helps for cramps in your legs.</strike> <i>(This is an antiacid used to treat heartburn and is unsupported by research for use with leg cramps. Try drinking more water!)</i></li>
<li>One baby aspirin everyday can help prevent getting a blood clot, which can occur from low activity. <i>(While there is evidence that Covid patients clot more easily, evidence for use in milder cases is lacking. Ask your doctor if you need this.)</i></li></ul>
<div>The bottom line is, stay active, stay hydrated and eat healthy with a focus on potassium-rich foods (not supplements, which aren't very helpful), antioxidant-rich foods and supplements that support your immune system. I hope this helps you, your loved one or someone you know.</div><div><br /></div>
<div>For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br /><br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.</div>The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-60947045738093842822021-01-08T05:00:00.302-08:002021-01-08T05:00:00.459-08:00Recovering from Covid, Pt 1<div>We all know our loved ones are often better off at home than in a
hospital where the staff may not know how to treat their LBD-related symptoms safely. This does not mean you should try to treat your loved one’s Covid at home without a doctor’s guidance or that you should avoid using hospitalization when needed. However, with hospitals as crowded as they are, doctors are often encouraging home care and you may be faced with this task. If you are dealing with Covid yourself, you may also be dealing with it at home. The same goes for you as for your loved one. Don't try to treat yourself at home without a doctor's guidance. Of course, if you have Covid someone else needs to care for your loved one until you aren't contagious. (Yes, I know. This is often a difficult thing to make happen but it is still critical.)</div>
<div><br /></div>
<div>The following list about "fighting Covid at home" has been circulating online and it's likely you've already seen it. A woman who had Covid and was being discharged from the hospital to finish recovering asked what she could do to fight the virus at home. Her doctor gave her this list. I liked the concept but decided I should check it out a bit before I passed it on. I found that there are several issues with it. I've left but crossed out the items that aren't supported by science and added comments in italics.</div>
<div><br /></div><div>Your loved one may not be able to do some of even the more helpful things or may need your help. But first, let me reiterate, this is for someone who has been treated for Covid and sent home to recover—<i><b>not</b></i> someone who is trying to avoid Covid.</div>
<ul><li><span><strike>Sleep on your stomach</strike></span> to give your lungs more room to work and prevent fluid from setting in.<i>(No evidence that this benefits (or harms) a person who does not already require ventilation. And if you are that sick, you need to be in a hospital!)</i></li>
<li><strike>Set your alarm</strike> for every two hours, then get out of bed and walk for 15-30 min, <strike><span>no matter how tired or weak that you are</span>. </strike><i>(Getting adequate sleep is also important. Most seniors need to get up
several times a night anyway. Instead of setting an alarm, use these times to do some extra walking. However, if
that little bit of exercise tires you out or makes you feel winded, it can be a
sign that pneumonia may be developing. Call the doctor!)</i></li>
<li>Breathe in thru your nose, and out thru your mouth. This will help build up your lungs, plus help get rid of excess fluid in your lungs. <i>(Only important if you were sent home from the hospital recovering
from Covid-related pneumonia.)</i></li>
<li>Move your arms around frequently, it helps to open your lungs. (<i>However, it is important <b>not to overdo</b>. Exercise only as much as you can do without feeling out of breath.)</i></li><li>While watching TV - get up and walk during every commercial. <i>(As above, exercise is good as long as it doesn’t tire you out or cause shortness of breath.)</i></li><li>When sitting in a recliner, sit up straight. <i>(This helps your lungs work better.)</i></li>
</ul>
<div>Next week's blog will finish this with some suggestions for diet and nutrition. Bottom line for this segment is to keep active without overdoing and use your posture to help your lungs function as well as they can.</div>
<div><br /></div>
<div>Two other things: 1. In view of how much of the original online post was not scientifically supported or incomplete , check out what you read, especially online, before you accept it as fact! 2. Remember that this is about how to help your body (or your loved one's body) recover <b><i>once Covid has been identified and treated</i></b>, not how to avoid it!</div>
<div><br /></div>
<div>For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br /><br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.</div>The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-28263378399470721662020-12-18T15:32:00.002-08:002020-12-18T15:32:19.920-08:00Forgiveness
This week I've invited Pat Snyder talk to us about forgiveness. This is a great subject to discuss right now when we are both so distant from so many of our loved one and so crowded up together with those with whom we live day in and day out. With this added stress, anger, blame and other negative emotions get closer to the surface. But expressing them hurts you a lot more than it does the person you are mad at. Let them go! Yes, I know, easy to say! But Pat makes it quite doable.<div><br /></div><div>Here is her 11.5 minute video: <a href="https://youtu.be/Ncl3R1wFjUk" target="_blank">Forgiveness</a> </div><div><br /></div><div>Take what she tells you and use it! You will feel a lot better, I'm sure. I know I do when I let go and forgive.<div><br /></div><div>We are taking a holiday break and so my next blog won't be until January 8, 2021. Merry Christmas and a Welcome New Year! </div><div><br /></div><div><div>For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br /><br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.</div></div></div>The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-52128274197395467092020-12-11T05:00:00.026-08:002020-12-18T15:04:03.622-08:00How Serious is Covid-19?
<p class="MsoNormal">This isn’t an LBD related issue, but in a way it is. We are
all likely either at risk or closely connected to someone who is at risk for Covid-19. Just how serious is it? I thought you
might like to see what I found out about some myths I’ve been hearing about
Covid-19.</p><p class="MsoNormal"><b><i>Myth</i></b><i>: </i>Repeated testing inflates the numbers.<i> <b>T</b></i><i><b>ruth</b>:</i> Each<i> </i>person has an ID and is counted only
once no matter how many tests they take. <i>(This is one I did wonder about, what with so many people getting tested and retested regularly.)</i></p><p class="MsoNormal"><b><i>Myth</i></b><i>: </i>Only seniors are at risk. <b style="font-style: italic;">Truth:</b>
The 50,000 Covid deaths of people under 65 is 18.5% of the total number of 270,000
deaths!</p><o:p></o:p><p></p><p class="MsoNormal" style="text-align: left;"><o:p></o:p></p><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p class="MsoNormal" style="text-align: left;"></p><ul style="text-align: left;"><li>Covid-19 has surpassed opioid overdoses as leading cause of
death for ages 25-44. <i>(This one surprised me!)</i></li><li>Anyone with an underlying health condition such as obesity, heart
disease, cancer or diabetes is also at risk. <i>(This group makes up 40% of our population. I'm in it. Are you?)</i></li><li>Asymptomatic younger people can pass the virus on to those
who are at risk. <i>(Like my daughter who lives with 2 ninety year-olds. Or many of you who live with, or want to visit, a loved one with LBD.)</i></li></ul></blockquote><b><i>Myth:</i></b><i> </i>Hospitals inflate Covid death numbers
to get more money<b>. <i>Truth:</i></b> Hospitals may receive money for Covid
deaths, but doctors don’t and they are the ones that do the certifying. <i>(Yes, hospitals get money but the cost per patient is more than they receive and so the hospitals really want this to go away! In addition, they only have limited staff. Here in Arizona, that is becoming a major issue.)</i><o:p></o:p><p></p><p class="MsoNormal"><b><i>Myth</i></b><i>: </i>The 270,000 Covid deaths is very
small compared to the total US population. <b style="font-style: italic;">Truth:</b> True, something like .03%. But compared
to other death tolls, it is one of the worst. <o:p></o:p></p><p class="MsoNormal"></p><ul style="text-align: left;"><li>Wars:</li><ul><li>Vietnam War: 58,000</li><li>Korean War: 37,000</li><li>World War II: 405,000</li><li>World War I: 116,000</li><li><b>Civil War: 600,000 to 850,000</b></li></ul><li>Pandemics:</li><ul><li>2009 H1N1: 12,469</li><li>1968 flu: 100,000</li><li>1957-58 flu: 116,000</li><li><b>1918 flu: 675,000</b></li><li><b>Covid-19 to date: 270,000 with 450,000 predicted</b></li></ul></ul><o:p></o:p><p></p><p class="MsoNormal"><o:p></o:p></p><p class="MsoNormal"><o:p></o:p></p><p class="MsoNormal"><o:p></o:p></p><p class="MsoNormal"><o:p></o:p></p><p class="MsoNormal"><o:p></o:p></p><p class="MsoNormal"><o:p></o:p></p><p class="MsoNormal"><o:p></o:p></p><p class="MsoNormal"><o:p></o:p></p><p class="MsoNormal"><o:p></o:p></p><p class="MsoNormal"><o:p></o:p></p><p class="MsoNormal"><b><i>Myth:</i></b><i> </i>The virus is going to do what it is
going to do. Protect the vulnerable and let everyone else get on with their lives.<i>
<b>Truth:</b></i> The “vulnerable” are all around us, but there is a lot we can
do to stop the spread.<o:p></o:p></p><p class="MsoNormal"></p><ul style="text-align: left;"><li>Since about 40% of Americans are in the at-risk group, even
those who are not at risk are probably in close contact with someone who is.</li><li>We know that it is a respiratory disease that mainly infects
via breathing, thus masks and social distancing provide protection.</li></ul>And so, bottom line, stay home as much as possible, wear your mask and do social distancing when you go out. Use the computer and phone to keep in contact with your loved ones! And lets all pray that a vaccine comes quickly and works well!<p></p><p class="MsoListParagraphCxSpFirst" style="margin-left: 0in; mso-add-space: auto;"><i>References:
Nicole Carroll, Why Do People Deny the Seriousness of Covid-19? USA TODAY, with number updates
from the John Hopkins University. <o:p></o:p></i><i>Friday, December 4, 2020,</i></p><p class="MsoListParagraphCxSpMiddle" style="margin-left: 0in; mso-add-space: auto;"><i><o:p> </o:p>Gillian
Brockell, 250,000 Lives Lost: How the Pandemic Compares to Other Deadly Events
in U.S. History. The Washington Post, November 19, 2020.</i></p><p class="MsoListParagraphCxSpLast" style="margin-left: 0in; mso-add-space: auto;"><o:p></o:p></p><p class="MsoNormal">
</p><p class="MsoNormal"><o:p></o:p></p>For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia, Ed. 2</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br /><br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-48194303957917429322020-12-04T05:00:00.001-08:002020-12-04T05:00:03.424-08:00A Manual For Staff
Last week's blog was about our latest book, A Caregiver's Guide to Lewy Body Dementia, 2nd Ed. This week, I want to tell you a little about another book we worked on last year, Lewy Body Dementia: A Manual for Staff. <div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkLNuXxHjJpIVbLQ3VdThOpXfty0pDcpFvEI-kXOf8f-2suOn6v-OA3c1qYmmDuPvVvLdUD2VC1MObw3HBWaLhYbnYI20Ktsm2tuF77e5scg7v6nebYtgjBUCeZDP-XcUHdRHCYGZHtpY/s441/frontSM.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="441" data-original-width="294" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkLNuXxHjJpIVbLQ3VdThOpXfty0pDcpFvEI-kXOf8f-2suOn6v-OA3c1qYmmDuPvVvLdUD2VC1MObw3HBWaLhYbnYI20Ktsm2tuF77e5scg7v6nebYtgjBUCeZDP-XcUHdRHCYGZHtpY/s320/frontSM.jpg" /></a></div><br /><div><div>It has much of the same up-to-date information in it as the new Guide, but it is written for your helpers and for facility care staff. It makes a wonderful gift for anyone who is helping you care for your loved one. You can find in on Amazon in print or eBook. You can also buy it as a part of a set on our LBDtools.com website.</div><div><div><br /></div><div>When you get the set, you also get a copy of our new Guide, and a copy of Responsive Dementia Care, which focuses on dealing with these frustrating behaviors. If you buy the Quad set, this includes the book that focuses more on early symptoms, Dealing with Cognitive Issues of Parkinson's & Lewy Body Dementia. While the information in these books overlap at times, each focuses on separate issues and all are helpful.</div><div><br /></div><div>Of course, there are many other helpful books available besides those we've written. In January, we'll review several of them here.</div><div><br /></div><div><div>For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br /><br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.</div></div></div></div>The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-75703044155316914382020-11-27T05:00:00.124-08:002020-11-27T10:43:40.284-08:00Our Latest Book is Out!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKbvGRdRJXF_4jgasftdVkpHb7EHjKajNW7kwW00s4Yi0OUdkQ4Ir9U-sZl579i2dUvst9-gU7VMpNDCoX1SXY-Ajoa-vQ_DmbS9e3AEBtay1lQKHthNqkJHTTtD46D7QCp0OBbYq606E/" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="300" data-original-width="406" height="236" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKbvGRdRJXF_4jgasftdVkpHb7EHjKajNW7kwW00s4Yi0OUdkQ4Ir9U-sZl579i2dUvst9-gU7VMpNDCoX1SXY-Ajoa-vQ_DmbS9e3AEBtay1lQKHthNqkJHTTtD46D7QCp0OBbYq606E/" width="320" /></a></div><br /><div>Thanksgiving is over and Christmas is coming soon. We have the perfect gift for your helpers and family members who want to know more about LBD. </div><div><i><br /></i></div><div><i>A Caregiver’s Guide to Lewy Body Dementia</i>, first published in 2010, has been called the LBD caregiver’s Bible, or Go-To-Book for years. And now there’s a 2nd Edition, with the newest facts as well as more information. For example, we’ve learned more about non-drug management of behaviors since the first book was written and this edition shows that. One of the complaints about the first edition was that the resource section was lacking. The resource section in this one is robust! Readers of our other books will recognize our easy-to-read but informative style using personal stories to illustrate well-researched facts.</div><div><br /></div><div>Springer, our publisher, is offering our readers a great introductory deal, good only for two weeks, starting today. Go to the <a href="https://www.springerpub.com/a-caregiver-s-guide-to-lewy-body-dementia-9780826148742.html">Springer website</a> and use the code <span> WHITWORTH20 <span>for a 20% discount and free shipping in the continental US. There's no limit on the number of orders you can do. Therefore, in addition to the book or books your order for yourself, you can make separate orders and </span></span>have Springer send books directly to distant relatives or friends. A great way to cross off some of the people on your Christmas list!</div><div><br /></div><div>The book sells for full price on <a href="https://www.amazon.com/Caregivers-Guide-Lewy-Body-Dementia/dp/0826148743/">Amazon</a>, with free shipping only if you are an Amazon Prime member. Be sure to check that you aren't buying from a 3rd person seller. The first edition is out there all over and if you get it instead of the 2nd, you may be stuck with it. Amazon is also offering a digital version but it costs almost as much as the paperback! I wouldn't bother unless you especially love digital books!</div><div><br /></div><div>We found a few other places online that offer the book, but we'd recommend staying with Springer or Amazon where you have a better idea of what you are getting.</div><div><br /></div>For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br /><br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-77222866262882456652020-11-20T05:00:00.194-08:002020-11-20T05:00:02.517-08:00
<p class="MsoNormal">Next Thursday is Thanksgiving. It won’t seem like it for us…and for many of you, I’m sure, because we won’t be having any big family get-togethers.</p>
<p class="MsoNormal">But we still have so much to be thankful for:</p>
<p class="MsoNormal"><b><i>Our heath.</i></b> As most seniors, we have our issues, but for the
most part, we are doing very well. And in Arizona, we have good health care. We’ve
learned to use telehealth and email for some of our doctor visits and I suspect
that won’t change when things get back to “normal.”</p>
<p class="MsoNormal"><b><i>Our home.</i></b> We are so grateful to have a comfortable home in
which to ‘”shelter in place.” We have stopped traveling to the PNW in the
summer and so we appreciate our home even more now.</p>
<p class="MsoNormal"><b><i>Our family: </i></b>We don’t get to see them as often, especially
now that we don’t travel, but we know they are there and they keep in touch
with us.</p>
<p class="MsoNormal"><b><i>Our finances:</i></b> We aren’t rich but as retired seniors, we
haven’t lost our jobs and we can pay our bills.</p>
<p class="MsoNormal"><b><i>Our friends:</i></b> We feel so fortunate to live in a small
community where we can gather with a few friends albeit, at an acceptable
distance, but still face to face (or mask to mask!).</p><p class="MsoNormal"><b><i>Our readers:</i></b> Of this blog, our website and especially our books. You keep us active and involved!</p>
<p class="MsoNormal">What is on your list? It is likely different from ours but
similar too. We hope you are taking care of yourselves, getting the help and
respite you need and staying in contact with family and friends, digitally if
not in person.</p>
<p class="MsoNormal">We have one last thing for which we are thankful:</p>
<p class="MsoNormal">Our most recent book has just been published: <b><i>A Caregivers Guide to Lewy Body Dementia, 2nd Edition</i></b>. Next week’s
blog will be all about it and the <b><i>special offer</i></b> that our publisher is offering
just in time for Christmas presents.</p>
For information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br /><br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-75479610045919117372020-11-16T06:24:00.000-08:002020-11-16T06:24:09.714-08:00Area Agency on Aging: Your Go-to for ResourcesWe talk a lot about how caregiving can be tiring and overwhelming. But it can also be expensive. We recently received a flier warning us that the Arizona state home improvement grant for caregivers ends after 2020. This reminded me that, with life in even a good care facility so isolating during this difficult time, many of you are likely looking for ways to keep your loved one home. <div><br /></div><div>If you don’t live in Arizona, you can check with your local Area Agency on Aging to see if something similar is available in your state. Also check to see if there are any Covid-related funds for caregivers.
In fact, make your local Area Agency on Aging your go-to resource center for senior care. Visit the national <a href="https://www.agingcare.com/local/area-agency-on-aging"><b>Area Agency on Aging </b></a>(AAA) website to find out where to go in your community and for lots of other valuable information. <div><br /></div><div> The AAA article, <a href="https://www.agingcare.com/articles/free-services-for-seniors-or-caregivers-156443.htm" target="_blank"><b>Free and Discounted Services for Seniors and Their Caregivers</b></a> is a great resource all by itself, offering sources and a small amount of information for each service. Do go to the article, but for now, here are many of the sources: </div><div><ul style="text-align: left;"><li><b><i>Benefit Counseling</i>.</b>This what I mentioned earlier. The
AAA is your starting point whenever you want to get answers about benefits for
seniors. Call your local office or visit
<span style="color: #2b00fe;"><b> </b><a href="https://www.benefitscheckup.org/" target="_blank"><span style="line-height: 107%;"><b>B</b><b>enefitsCheckUp.org</b></span></a>.</span> to
search for local, state and federal benefit programs.</li><li><b><i>Adult Day Care:</i></b> Get lists of local centers at your local
AAA or go online and use their<span style="color: #800180;"> </span><b><span style="color: #800180;"><a href="https://www.agingcare.com/local/adult-day-care" target="_blank">Adult
Day Care Directory</a><span class="MsoHyperlink">.</span></span> </b>When
inquiring about Day Care services, provide as much information about your ability
to pay and your loved one’s capabilities as you can to get the best match for
your situation.</li><li><b><i>Medicaid-Covered Dental Care: </i></b>Contact your state’s
department of health or visit the American Dental Association’s<span style="color: #2b00fe;"> </span><a href="https://findadentist.ada.org/" target="_blank"><b>Find-A-Dentist</b></a> web
site.</li><li><b><i>Free Dentures:</i></b> Contact your state’s dental association
and any nearby dental colleges. Also contact AAA to see if they have any other
suggestions.</li><li><b><i>Pharmaceutical Assistance Programs:</i></b> Go to <a href="https://www.medicare.gov/pharmaceutical-assistance-program/#state-programs" target="_blank"><span style="color: #2b00fe;"><b>State Pharmaceutical Assistance Programs</b></span></a> to
find out if you live in a state that offers help with Pharms and if so, what
kind.</li><li><span style="font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"><b><i> </i></b></span><!--[endif]--><b><i>Prescription Drug Discounts:</i></b> Use the <a href="https://medicineassistancetool.org/" target="_blank"><b><span style="color: #2b00fe;">Medicine
Assistance Tool</span></b></a> to find discounts from pharm companies.</li><li><i><b>National Family Caregiver Support Program:</b></i> The <a href="https://acl.gov/programs/support-caregivers/national-family-caregiver-support-program" target="_blank"><span style="color: #2b00fe;"><b>NFCSP</b></span></a> provides funding to states for the
support of informal caregivers.</li><li><b><i>Discounted Phone or Internet Services:</i></b> Visit <a href="http://www.lifelinesupport.org/ls/" target="_blank"><b>LifelineSupport.org</b></a> to
see if you qualify for support and if there are any participating companies in
your area. Some companies such as Comcast and Cox ma offer their own as well.</li><li><b><i>Retail Store Discounts:</i></b> Visit <a href="https://knoji.com/stores-offering/senior-discount/" target="_blank"><b>Retail
Store Discount</b>s</a> to find out about stores that offer regular discounts
to seniors. Also ask staff at your regular store about extra discounts.</li><li><span style="font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span><b><i>Free Phone for Hearing Impaired Individuals:</i></b> <b><a href="https://captioncall.com/"> CaptionCall</a> </b><span style="color: black;"><span style="color: black;">provides free captioned telephones to those with hearing loss. For iPhone and iPad owners, there is also a free
app.</span></span></li><li><b><i>Supplemental
Nutritional Assistance:</i></b> Managed by states. visit the <a href="https://www.fns.usda.gov/snap/supplemental-nutrition-assistance-program" target="_blank"><b>USDA SNAP</b></a> website for a list of national and
state websites.</li><li><i><b>Other
Free Food Services:</b> </i>Check with local AAA about local food banks, meal programs.
Also visit<b> <a href="http://www.feedingamerica.org/find-your-local-foodbank/" target="_blank">FeedingAmerica.org</a></b>.</li><li><b><i>Free
Hearing Aids: </i></b>Local Lions Club. Contact manufacturers about clinical trials on
new aids.</li><li><b><i>Free
Legal Help:</i></b> <a href="https://www.lsc.gov/" target="_blank"><b>Legal Services
Corporation</b></a>, AAA, local law schools, local and state bar associations,
local senior centers. Veterans: Google <span style="color: #674ea7;"><a href="https://www.va.gov/ogc/legalservices.asp" target="_blank"><b>legal help
for veterans</b></a> </span>for a list of related websites.</li><li><span style="font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span><!--[endif]--><b>Medical
Alert Systems:</b> AARP members, veterans, and seniors with certain insurance
carriers may be able to enjoy discounts on medical alert systems from certain
providers. Some states may also have grants. Do read the AAA article before choosing
a system.</li><li><b><i>Discounted
Mobility Aids:</i></b> Look for used items in thrift stores. Some non-profit
organizations have them to lend. Also ask hospitals and nursing homes about
used equipment. Ask your local AAA about local sources.</li><li><b><i>Low
Income Home Energy Assistance Program:</i></b> The <a href="https://liheappm.acf.hhs.gov/navigator" target="_blank"><b>LIHEAP</b></a> provides
energy bill assistance to low-income owners and renters. The <a href="https://www.energy.gov/eere/wap/weatherization-assistance-program" target="_blank"><b>Weatherization Assistance Program</b></a> (WAP) can
help with installation or repair of HVAC systems, and seal doors and
windows. </li><li><i><b>Long-Term
Care Ombudsman Services:</b> </i>Contact your state ombudsman if you feel your loved
one is being neglected, abused or exploited in a LTC facility. Contact information
should be prominently displayed in the facility or you can find it on the <a href="http://theconsumervoice.org/get_help" target="_blank"><b>National
Consumer Voice for Quality Long-Term Care</b></a> website.</li><li><b><i>Residential
Repair Services:</i></b> Check to see if your local AAA runs a repair service for minor
upgrades and aging-in-place adaptions. You pay for supplies but labor is volunteered.
Also ask about state grants like the one mentioned at the first of this blog.</li></ul></div></div><div><p class="MsoListParagraph">Next week is Thanksgiving and we are taking the week off. Everyone enjoy a safe and happy holiday. The next blog, on December 4th, will be about more web resources for care partners.</p>For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br /><br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.</div>The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-2532814657126188502020-11-13T07:14:00.006-08:002020-11-13T07:14:00.134-08:00LEADER Principles: Hallucinations<p>This fourth in the LEADER Principles of Interaction series is about hallucinations. Hallucination are often the among the least stressful LBD-related behaviors--at least for your loved one. Mary and Frank are back to share their experiences using the LEADER Principles.</p>
<p><i>Frank started hallucinating well before he had other LBD symptoms. I would just kindly tell him, “Yes, I know you see them, I can’t. They aren’t real—they’re a symptom of your Parkinson’s.” He’d nod and that would be the end of it. Of course, sometimes, he liked to share his “visions” with me because, he said, they were so entertaining. We’d laugh but we both knew that what he was wasn’t real. But that has changed. He doesn’t believe me when I tell him I can’t see what he sees so clearly. – Mary</i></p>
<p><b>Learn and Lead</b></p>
<p><b>Learn: </b> Lewy bodies that start in a person’s movement control center cause Parkinson’s but in time, these damaged proteins tend to migrate to other areas of the brain. When they migrated to Frank’s visual perception center, he: </p>
<ul><li>
Experienced hallucinations--seeing things that aren’t really there but his thinking abilities were not affected</li>
<li>Could accept feedback and make judgements about the reality of what he sees. </li> </ul>
<p>When Lewy bodies spread into the cognitive areas of Frank’s brain, </p>
<ul><li>
His thinking fade, leaving only basic thinking skills</li>
<li>He can now only accept what his brain receives first, the hallucination, as real.
</li><li>This may also be combined with an emotion and a prefabbed story, a delusion. </li></ul>
<p>These hallucinations may be less stressful for Frank than Mary, who sees them as a step towards dementia. However, by monitoring and changing her behavior, she can lead Frank—and herself—to a more comfortable place for both of them. </p>
<p><b> Emotions and Empathy. </b>Most hallucinations are benign, that is they don’t trigger strong emotions. The problem often lies with the care partner: </p>
<ul><li>
If Mary feels distressed, her distress will be picked up by Frank as negativity and mirrored as behavior fired by negative emotions</li>
<li>If Mary tries to do as she’s done in the past and explain away the hallucinations, Frank will feel insulted and will express this with behavior fired by his negative emotions. </li></ul>
<p>Mary can change this by: </p>
<ul><li>
Being careful not to express negative feelings in Frank’s presence</li>
<li>Empathizing with Frank and thinking of how she’d feel if she firmly believed something but wasn’t given credit for that belief. </li></ul>
<p><b>Acceptance and Alliance. </b>For her own peace of mind, Mary must</p>
<ul><li>
accept that Frank can no longer accept her explanations. (This makes the empathy possible!) </li>
<li>Agree with what he sees. Mary doesn’t have to BELIEVE, she just needs to play along, as she might at a child’s tea party. </li>
<li>Let it be unless the hallucination is unsettling to Frank. She might just nod when Frank tells her Aunt Jane is napping on the sofa, for example. She doesn’t have to try to wake Aunt Jane up or have a conversation with her. </li>
<li>Join Frank’s reality if necessary, to deal with a stressful hallucination. </li></ul>
<p><b>Deflect and Do. </b>If the hallucination is stressful to Frank: </p>
<ul><li>
Mary’s acceptance of what he is experiencing as real will likely deflect much of Frank’s stress. He isn’t having to convince her it is real and he has her support. </li>
<li>Mary can now do something within Frank’s reality to make the hallucination go away. For example, Mary might tell the “bothersome kids” it’s time to go home now and physically usher them out the door. </li></ul>
<p><b>Entertainment and Enthusiasm. </b>As with any other unwanted behavior, distraction will help Frank to move further away from the experience so that it isn’t retriggered. Distractions need to be: </p>
<ul><li>
Something that Frank enjoys.</li>
<li>Presented with a positive and enthusiastic attitude that Frank can mirror.</li></ul>
<p><b>Residual Emotions and Response. </b> These may not be as big an issue with benign hallucinations as they are with other behavior. With unsettling hallucinations, including those Mary doesn’t accept as Frank’s reality: </p>
<ul><li>
emotions generated by the event will be remembered even when the event isn’t. These residual emotions will then be triggered by a new event. </li>
<li>The quicker Mary can accept Frank’s hallucinations as his reality and deflect any unsettling emotions, the weaker the residual emotions will be when they appear again. </li></ul>
For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br /><br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-65751934937802490532020-11-06T05:00:00.009-08:002020-11-06T05:00:00.125-08:00LEADER Principles: Delsuions, Accusations and AngerThis blog, which addresses accusations and extreme anger, continues to follow Mary as she learns to use the LEADER Principles of Interaction to deal with Frank’s dementia-related behaviors. If you haven’t read at least the first blog in this series, an overview of what LEADER stands for, it is a good idea to do so now.
<p><i>Frank has always trusted me but now he had become very suspicious. He accuses me of wanting to run off to have an affair with the grocery clerk when we go shopping. He thinks the handyman we got to clean our gutters is just hanging around to get close to me when Frank is napping. And so on. When I try to defend myself, he gets very angry. In fact, anger seems to be very close to the surface for him with just about anything. -- Mary</i></p>
<p>Using the LEADER Principles:</p>
<p><b>Learn and Lead:</b> Here is some information that Mary needs to know so that she can lead Frank away from his angry delusions of infidelity. </p>
<ul>
<li>Frank’s brain is losing the ability to do complex (abstract) thinking tasks such as comparing, judging or prioritizing. He also can’t do concepts like time or distance.</li>
<li>Frank’s illness makes him feel insecure, dependent and fearful of being left alone.</li>
<li>When an event triggers a residual emotion such as that fear, the brain automatically provides a story, a prefabbed reason for the emotion. Normally, the next step is to use complex thinking to accept or reject this story.</li>
<li>Without the ability to think complexly, Frank must accept this prefabbed story, this delusion, as is, as his only TRUTH. He can’t change it.</li>
<li>Without complex thinking, Frank’s thinking is “all or nothing,” “is or isn’t.” Likewise, his emotions tend to be either unnoticed or extreme.</li>
<li>Negative emotions are designed to be alarms, calls to action. They continue to blare until addressed. (See last week’s blog)</li>
</ul>
<p><b>Emotions and Empathy.</b> By empathizing with Frank, Mary</p>
<ul>
<li>Identifies his underlying emotions and accompanying theme and</li>
<li>Relates with his fear of abandonment, his fear that she will leave him </li>
<li>Recognizes that without the concept of time, “will leave” means “leaving now.” </li></ul>
<p><b>Acceptance and Alliance. </b>Mary:</p>
<ul><li>Quickly accepts the responsibility for his anger. “Oh, honey. You must feel awful. I’m so sorry.”</li>
<li>Uses words and tones that show affection and caring, even in the face of Frank’s anger, to emphasize that she is with him and not against him.</li>
</ul>
<p><b>Deflect and Do. </b>An apology can work wonders to deflect anger! Mary's apology:</p><ul>
<li>Shows that she accepts Frank's complaint as real</li>
<li>Decreases his negative feelings. (See previous blog on the magic of apologies.)</li><li>Satisfies Frank's need for action</li>
</ul>
<p><b>Entertainment and Enthusiasm. </b>As soon as Frank’s anger decreases, Mary can enthusiastically suggest a distraction—something that will entertain Frank and refocus Frank’s attention away from his negative emotions.</p>
<p><b>Residual Emotions and Response.</b> Frank will likely forget the incident with the handyman, but his fears remain and can be triggered again and again. The quicker Mary can respond with an apology and then a distraction, the weaker those fears will be.</p>
<p>Next week’s blog will be about dealing with hallucinations.</p>
<p>For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a></p>
<p>Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.</p>The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-15461434446306877002020-10-30T06:00:00.247-07:002020-10-30T06:00:00.119-07:00LEADER Principles: Obsession
<p>Last week’s blog introduced our LEADER Principles of Interaction, a guide to relating with your loved ones in ways that decrease rather than increase dementia-related behaviors. This next series of blogs will focus on using these principles to deal with specific behavioral issues. One of the behaviors that seems to be showing up a lot is
obsessions. An obsession is getting so stuck on an idea that you can’t move on. Obsession is often a coping method for dealing with discomfort. With Covid making so many changes in our lives, it not surprising that care partners are seeing more of this.</p>
<p>Frank has been obsessing about a bill that he’s sure hasn’t been paid. Mary has tried to tell him it has been paid, but he is stuck in his belief.</p>
<p>Let’s use the LEADER Principles to address Mary’s concerns:</p>
<p><b>Learn and Lead.</b></p>
<p>First Mary must learn how Frank’s dementia damaged brain functions.</p>
<ul>
<li>Once a thought is in Frank’s brain, it is his unchangeable
TRUTH.</li>
<li>Frank’s TRUTH comes packaged with a negative emotion (worry) that demands action.</li>
<li>Frank’s brain can only process in the here and now, and so he needs this action to be immediate.</li>
<li>Frank’s brain can’t do concepts, and so the
action also needs to be physical, something he can experience.</li>
<li>Frank can't change but he can follow.</li></ul>
<p>Next, Mary can lead by choosing a way of interacting with Frank that:</p>
<ul>
<li>deflects his controlling emotions and</li>
<li>leads with suggestions and invitations
</li></ul>
<p><b>Emotions and Empathy.</b></p>
<p>Frank’s emotions rule. The stronger the emotion, the more
demanding it is. When Mary tried to explain, frustration and other negative emotions:</p>
<ul>
<li>Joined his original worry and made his emotions even stronger stronger</li>
<li>Blocked his ability to hear anything that didn’t
support his TRUTH</li>
<li>Pushed him to increase his efforts to get
action.</li></ul>
<p>Mary can use empathy to help her:</p>
<ul><li>See the issue from Frank’s view—the only one that counts</li>
<li>Understand his concern that the bill is UNPAID.</li></ul>
<p><b>Acceptance and Alliance. </b>Acceptance does not mean belief but it does mean understanding that this is Frank’s only TRUTH. In the past, both Frank and Mary felt unheard, frustrated and alone. When Mary accepts that the unpaid bill is a serious issue that needs to be addressed and offers work with
Frank to find a solution:</p>
<ul><li>Frank feels supported</li>
<li>His defenses lower and</li>
<li>He can pay attention to Mary’s words.</li></ul>
<p><b>Deflect and Do. </b>Positive feelings of support and alliance deflect negative emotions and begins the process of refocusing. Then, doing something physical must follow to satisfy any remaining emotional demands for action. Here are some suggestions. Can you think of others?</p>
<ul><li>Mary can help Frank pay the bill by writing out
a check and putting it in an envelope that she sets “to be mailed.” Then this can be tossed when he isn’t looking. (See blog about the value of therapeutic fibs.)</li>
<li>Mary can help Frank discover that the account is
up to date. She might shout, “Hey, come and check out this invoice that I found.” Then when he does, she can ask, “What is the date? Is it for after the bill was due? What’s our balance? Hey, is it positive?” (By using invitations and questions, Mary leads Frank into the physical action of looking at the invoice and discovering for himself what the invoice says.)</li></ul>
<p><b>Enthusiasm and Entertainment. </b>Dementia shortens a person’s attention span. This makes distractions good tools for refocusing attention towards something that won’t trigger lingering negative feelings. Effective distractions should be something entertaining presented with enthusiasm.</p>
<p>Mary’s upbeat attitude:</p>
<ul><li>gives Frank a model he can copy</li>
<li>helps him generate a healthy excitement that keeps his negative emotions at bay</li>
<li>allows him to use his damaged thinking abilities the best
he can.</li></ul>
<p>Then the distraction Mary offers gives Frank a new focus. The more entertaining it is the better he will be able to focus on it and let go of any lingering worries about that bill.</p>
<ul><li>Ice cream or anything sweet usually works well.</li>
<li>So might watching a favorite TV show.</li>
<li>Can you think of others that work with your loved one?</li></ul>
<p><b>Residual emotions and Response. </b>Sadly, this isn’t the end of the story. Unlike memories of events, the emotions attached to the events are not erased by dementia. They last, ready to be triggered by a new event, or even a word and re-experienced. The stronger the emotion, the longer they last.</p><ul><li>Frank is very likely to become obsessed about
the bill again and Mary will have to go through the same LEADER process again—and again.</li>
<li>Mary’s goal must be to respond quickly so that Frank’s negative emotions get weaker, not stronger. Not only will he be easier to lead away from his obsession this time, but the emotions that trigger the obsession won’t be as strong next time.</li></ul>
<p>The next blog will be about dealing with accusations and
irrational anger, which often go together. You may notice a lot of similarity between this blog and the next ones. That’s good. That means that you can then generalize the LEADER Principles to other behaviors.</p>
<p>For more information about Lewy body disorders, read our books:</p>
<ul><li>
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a></li>
<li><a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a></li>
<li><a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a></li>
<li><a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a>
</li></ul>
<p>Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.</p>The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-58374461420049451922020-10-23T06:00:00.284-07:002020-10-23T06:00:00.175-07:00The LEADER Principles of Interaction
<p>This week’s blog is the start of a new series about what we call
the LEADER Principles. This first blog explains these Principles as general guides
for dealing with dementia-related behaviors using the “magic” tools outlined in
previous blogs. If you haven’t read those blogs, do go back and do so now.
These tools, based on different rules than most of us have followed in the past,
may not be easy to accept at first. But give them a try; they truly can be
magic in helping you interact effectively with your loved one.</p>
<p><i>My husband, Frank, was diagnosed with LBD a year ago. He had some problems but we were doing all right until Covid came along and changed so many
of our routines. Frank hates change and can’t understand why we must stay in the car when we go out for ice cream or why everyone we see is wearing masks. I think this all frightens him. His delusions are worse and he’s angry a lot more. I’ve tried explaining; it just makes him impatient. I try not to respond to his anger with my own but that’s hard sometimes too. And when I try to defend myself, that really sets him off! I’m at my wit’s end. -- Mary</i></p>
<p>The way Mary responded successfully to Frank for years no longer work with his dementia-damaged brain. She needs new responses, new tools. Instead of reacting to his behavior with old words and actions, she must consciously choose different responses—use different tools. Our LEADER Principles provide a structure for use of these tools.</p>
<p>LEADER stands for:</p>
<blockquote>
<b>L</b>earn and Lead<br />
<b>E</b>motions and Empathy<br />
<b>A</b>cceptance and Alliance<br />
<b>D</b>eflect and Distract<br />
<b>E</b>ntertainment and Enthusiasm<br />
<b>R</b>esidual emotions and Rapid response</blockquote>
<p>These responses may not feel very comfortable at first but she can adapt. Frank can’t. He simply reacts, communicating his discomfort, pain and fear behaviorally. With Covid messing with their routines, there’s likely plenty of that already. To keep from causing more, Mary must first learn ow dementia, and especially LBD, damages a person’s ability to think abstractly.</p>
<p><b>Learn and Lead</b></p>
<p><b>Learn</b>: To make effective conscious choices, Mary needs to learn how dementia has changed the way Frank’s brain works. Our book, <i>Responsive Dementia Care </i>(see link below) is a good reference. However, she--and you!--can start right here. Frank is losing his complex thinking skills, his ability to multitask, compare, judge, generalize, compare or use concepts like distance and time. His remaining thinking skills function with these rules:</p>
<ul>
<li><b><i>One thing at a time. </i></b>Frank can no longer gather more information, compare, judge or prioritize.
</li>
<li><b><i>One TRUTH.</i></b> What Frank’s brain first receives is his reality, his TRUTH and can’t be changed.</li>
<li><b><i>Here and now. </i></b>Frank has difficulty mentally putting himself in another place. He also can’t refer back to the past or plan for the future.</li>
</ul>
<p><b>Lead:</b> Frank can’t choose his behavior; he just reacts. However, he can follow. Therefore, MARY must:</p>
<ul>
<li>Respond in ways that calm rather than irritate Frank</li>
<li>Deflect Frank’s blocking emotions</li>
<li>Lead by suggestion, invitation and example.</li></ul>
<p><b>Emotions and Empathy</b></p>
<p><b>Emotions.</b> On its way to the brain, each packet of information picks up an emotion, often negative. Negative emotions are the body’s natural alarm system, blaring out a demand action. A person with complex thinking can choose to act now, plan for later action or dismiss the demand as a false alarm. With only basic thinking skills, Frank can only act.</p>
<p><b>Empathy. </b>When Mary identifies Franks emotions
and empathizes with him, she sees the situation from his view—she sees his TRUTH and understands his need for a solution that will quiet his "alarm."</p>
<p><b>Acceptance and Alliance</b></p>
<p><b>Acceptance: </b>Accepting Frank’s TRUTH doesn’t mean that Mary believes it; it simply means that she knows that this TRUTH is all there is for him.</p>
<p><b>Alliance.</b> When Mary joins Frank’s reality, she becomes his ally instead of his adversary and his negative emotions stop blocking her out.</p>
<p><b>Deflection and Do.</b></p>
<p><b>Deflection. </b>As a team member in Frank’s reality, Mary can deflect (decrease) his negative emotions by agreeing that he has a problem. </p>
<p><b>Do. </b>Frank's emotions may be less demanding but they aren't going to quit alarming until he has acted on them. Once Mary has Frank's attention, she can offer to help him find an action acceptable to both of them.</p>
<p><b>Entertainment and Enthusiasm:</b></p>
<p><b>Entertainment.</b> Once Frank has acted, Mary can help him forget his alarming demands by using something he enjoys to refocus his one-track mind. The most effective distraction is different for each individual, but the more entertaining it is, the better it will work.</p>
<p><b>Enthusiasm.</b> It also helps for Mary to model eagerness with an upbeat, positive attitude. </p>
<p><b>Residual Emotions and Response</b></p>
<p><b>Residual emotions.</b> Emotions, unlike events, are not forgotten. Frank may forget about the event that triggered his negativity, but the emotional memory is
still there in the background. Depending on its strength, Frank can feel it again and again, as new events trigger it into action.</p>
<p><b>Response.</b> A rapid response to Frank’s behavior is important. As his frustration builds, so does the strength
of his emotions. The sooner Mary can align herself with Frank’s worldview, the weaker these emotions will be. The weaker they are, the easier it will be to deflect them—and the weaker they will be as residual emotions.</p>
<p>The next blogs will take these general principles and apply them to behaviors like obsessions, irrational accusations and hallucinations.</p>
<p>For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br /><br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.</p><p></p><p></p>The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-3894567246111003582020-10-16T06:00:00.004-07:002020-10-16T06:00:00.502-07:00Magic Tools 5: Distraction<i>Once I accepted Frank’s view of things and did what I called to myself “playing his game,” life became a lot easier. I’ve even learned to apologize like I mean it! He calms down and then I can usually get him to forget all about being upset by offering to do something fun with him like looking at old photos. Mary</i><br />
<br />
If you haven’t read the earlier blogs in this series, go do that now. They will explain how dementia damages the brain and why Mary’s “playing Frank’s game” works. This is the final blog in the magic tools series and is likely the one you know best, distraction. The magic of distraction is that it refocuses your loved one’s attention away from whatever was causing the unwanted behavior—and makes both of you feel much better.<br />
<br />
Distraction works because dementia:<br />
<ul>
<li>Limits a person’s attention span.</li>
<li>Decreases their ability to consider more than one thing at a time.</li>
<li>Promotes following by impairing the ability to initiate action.</li>
</ul>
Thus, once you can get your loved one’s attention focused on you instead of their problem behavior, it can be fairly easy to make a suggestion that will draw their attention further away from the situation causing the behavior.<br />
<br />
Distractions won’t work if:<br />
<ul>
<li>You don’t have your loved one’s attention. You can’t compete with the attention that strong negative emotions demand.</li>
<li>The situation isn’t physically resolved. This must happen for those negative emotions to stop blaring and demanding action.</li>
<li>Your loved one isn't interested in your choice of distraction.</li>
</ul>
What’s a good distraction? It will work best if:<br />
<ul>
<li>You are enthusiastic about it too. Your loved one is a follower and so if you want to do it, it will be easier to convince them to do it too.</li>
<li>It is attractive to your loved one, and is something they enjoy. This will vary with each person.</li>
<li>It is sweet. Dementia damages the ability to taste but the sweet taste buds are the last to be affected. Ice cream is usually a good bet...sweet, with a cold kick as well.</li>
<li>It has some physical aspect, since your loved one functions better physically than they do mentally.</li>
<li>It moves your loved one physically from the location where the behavior was occurring, thus eliminating visual triggers for a recurrence of the behavior. Start you offer with "Let's go....(somewhere else!)"</li>
<li>It is positive. Make it a happy event or you are likely to re-invite the negative behavior.</li>
</ul>
OK, we’ve talked about some “magic” tools. Now let’s put them to work! The next series of blogs are about the LEADER Principles of Interaction, guides for using these tools with a variety of dementia-related behaviors.<br />
<br />
<p>For more information about Lewy body disorders, read our books:</p>
<ul><li>
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a></li>
<li><a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a></li>
<li><a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a></li>
<li><a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a>
</li></ul>
<p>Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.</p>The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-76504559774760612512020-10-09T06:00:00.000-07:002020-10-09T06:00:05.361-07:00Magic Tools 4: A Sincere ApologyApologizing to your irate loved one for something you didn't do may be the last thing you want to do. But it is magic! To understand how it works, you must see the interaction from their reality. When your loved one feels wronged and voices an accusation, they need to have their concern recognized and validated. Only then do their negative feeling stop blaring. (See the second blog in this series, The Magic of Empathy, to learn more about the importance of paying attention to your loved one’s emotions.)<br />
<br />
This often means apologizing for something you didn’t do. However, the issue isn’t about what you did. It is about what your loved one BELIEVES you did—and this is something neither he nor you can change. But <i>you </i>can change your response. Our book, <i><a href="http://responsivedementiacare.com/">Responsive Dementia Care</a>,</i> explains it this way:<br />
<blockquote>
<i>The last time Gerry accused me of infidelity, I just told him I was sorry. I was amazed. Once I'd accepted his way of seeing things, he calmed right down. Then, when I suggested we go have lunch, he was happy to go. - Olivia</i><br />
<br />
Olivia’s apology defused the situation. Gerry felt heard and was able to let go of his painful negative feelings and relax so that Olivia was then able to use his short attention span to deflect his attention onto something more pleasant.</blockquote>
Don’t wait to apologize. Do it quickly. The longer you resist, the stronger your loved one’s emotions become and the harder it will be to deflect them.<br />
<br />
When you apologize, be sincere even if you didn't do anything wrong. Without sincerity, your apology may not work. You can justify to yourself an "I'm sorry" statement about something you didn't do by:<br />
<ul>
<li>Thinking about how sorry you are that your loved one is having to experience this unhappy experience, even though it is not your reality.</li>
<li>Considering yourself an improv actor in their drama.</li>
<li>Accepting apologizing as a tool that can quickly defuse negative feelings and replace them with positive feelings like validation and acceptance.</li>
</ul>
Don't worry that your apology will cause your loved one to believe even more firmly in their accusation. The opposite is actually true. Since emotion, not fact, is the driving force for your loved one’s behavior, your resistance increases your loved one’s negative feelings and strengthens their belief. Your apology deflects those emotions and replaces them with positive feelings of being heard, understood and valued. It also weakens their emotional memory of the event—and thus, the strength of these residual emotions when attached to upcoming events.<br />
<br />
Next week, the blog will be the first in a series on what we call the LEADER Principles. This are a guide to help care partners deal with dementia-related behaviors.<br />
<br />
For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br />
<br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-31922367211095362522020-10-02T06:00:00.001-07:002020-10-02T06:00:01.832-07:00Magic Tools 3: EmpathyLast week, we started a series of blogs about the magic of using the right tools with LBD. If you haven’t read last week’s blog, do go back and read it. It lists some of the most important ways that dementia changes your loved one’s brain. Doing your homework and learning about these changes is a requirement if you are going to use these tools well. Last week’s blog also emphasized that the way you respond can make magic changes in your loved one’s reactions. At first, your response likely isn’t going to be automatic. It needs to be a carefully thought out choice, a conscious choice based on what you’ve learned about the dementia-damaged brain.<br />
<br />
This week, we take the next step and talk about how important emotions are. Once dementia sets in, emotions rule. Last week, you learned that your loved one must accept the first information they receive about a situation as their TRUTH. That first information always has an accompanying emotion, and since the brain doesn’t like the unknown, it makes up a story to justify the emotion. This is a normal process—we all do it. <br />
<ul>
<li>Something happens. You see a dog or hear someone talking on the phone or….</li>
<li>This information travels to the brain and picks up an emotion along the way. Since negative emotions like fear, worry, frustration or anger are the strongest and most urgent, the chances are that it will be one of these. </li>
<li>The brain doesn’t tolerate uncertainty, and so it automatically adds a reason for the emotion.</li>
<li>These strong and urgent emotions function as a natural alarm, a call to action that blares until the “reason” is addressed. </li>
<li>Then the brain uses complex thinking to evaluate the situation: Is the need for action real or false? If it is real, is it mild or severe? Should I act on it now or can I postpone action until later?</li>
</ul>
Up to the last step, that’s what we all do. Last week we introduced Frank, who is living with LBD. He can no longer take that last step. His brain doesn't have the ability to evaluate or decide on an action. Instead:<br />
<ul>
<li>He must accept the emotional alarm and the reason for it as real and urgent—his TRUTH.</li>
<li>He will continue to feel the negative emotions until he believes that they have been physically addressed. (A mental solution will no longer work… “it was already taken care of” or “I’ll do it later” or even “that’s Jane’s job” just doesn’t compute.)</li>
<li>Stuck with this blaring negative emotion that demands action, Frank does his best to address it with behavior that is likely extreme and appears irrational.</li>
</ul>
Empathy is an essential dementia care partnering tool. That underlying negative emotion driving your loved one’s behavior MUST be addressed. Nothing else will work. <br />
<ul>
<li>Ask yourself what you would feel if you believed as he does? Allow yourself to feel that. </li>
<li>And then, go deeper. What else might you feel in his place? For example, yes, you would feel angry if your believed that your spouse was unfaithful. But what else would you feel?</li>
<li>There is usually an underlying emotion causing the anger. For example, belief in a spouse’s infidelity is often based on a fear of abandonment.</li>
<li>Speak to that emotion, not the words or the actions. This is what you must name and share and deflect. (More about this next week)</li>
</ul>
<b>The Magic of Self-Awareness. </b>Self-awareness is another tool that focuses on emotion. Although Frank can’t empathize, he is super-sensitive to the emotions of others, and especially his wife, Mary's emotions. He doesn’t see them as hers however. Anything he feels, he owns.<br />
<br />
And so if Mary shows up feeling angry at their neighbor, Frank feels her emotion, identifies it correctly as anger and correctly relates it to Mary.<br />
<br />
But then, he owns it. That is, Frank’s brain:<br />
<ul>
<li>picks up Mary’s anger as his and, as always,</li>
<li>adds a “reason” based on a residual feelings like fear or loss. </li>
</ul>
Thus, Frank experiences Mary’s anger at the neighbor as his anger AT HER for something hurtful that he now believes she did to him.<br />
<br />
You can avoid passing your negative feelings on to your loved one by being more aware of your own emotions. <br />
<ul>
<li>Routinely check your emotional attitude before you interact with your loved one—or even before you enter a room where your loved one is. </li>
<li>What are you feeling? If it is something negative, take a moment to consciously choose something else to focus on.</li>
<li>The something else doesn’t have to be super positive, just not negative. (YOU can do this. It isn’t easy, but with practice it gets easier.)</li>
<li>When you just can’t stop feeling negative (and no one can all the time!), take feelings into the bathroom or at least, out of the room until you CAN feel more positive.</li>
</ul>
The next blogs will address other “magical” dementia care partnering tools, including acceptance, apologies and distractions.<br />
<br />
For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br />
<br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-80997909252818338452020-09-25T06:00:00.001-07:002020-09-25T06:00:00.126-07:00Magic Tools 2: Conscious ChoiceLast week we started this series about behavior management with a discussion about checking on a couple of issues that often lead to difficult behavior, your loved one's health and their environment. If you've found no problems there but the behavior is continuing, it is time to look at how you interact with your loved one.<br />
<br />
Dementia changes the rules. It changes how your loved one thinks and what they do. For them, what once was simple curiosity can become a wild accusation. What once might have been a pleasant fancy, a wishful thought or an uneventful happening can morph into a totally believed delusion. Unless you change your own behavior, you may find that all too often, once calm discussions become raging arguments.<br />
<br />
<i>Frank and I have had a good marriage where we could usually talk out our differences. But then he was diagnosed with LBD a year ago. We were doing all right until Covid came along and changed so many of our routines. Frank hates change and can’t understand why we must stay in the car when we go out for ice cream or why everyone we see is wearing masks. I think this all frightens him. His delusions have gotten worse and he’s angry more too. I’ve tried explaining; it just makes him impatient. I try not to respond to his anger with my own but I don’t always succeed. And when I try to defend myself, that really makes him angry! I’m at my wit’s end. Mary</i><br />
<br />
Like Frank and Mary, most of you have had successful relationships prior to LBD, as couples, parent and child, siblings or friends. You had developed tried and true ways to relate comfortably. When dementia appears, those old ways that once worked so well often fail. For example, Frank and Mary’s ability to talk out their differences depended on being able to recognize and respect each person’s point of view and then make compromises. This requires complex thinking, something LBD has taken from Frank.<br />
<br />
<b>New Tools for New Rules. </b>Since dementia changes the rules, Mary needs to learn what has changed and how to deal with the results of those changes. Our book, <i><a href="http://responsivedementiacare.com/">Responsive Dementia Care</a></i> explains the thinking skills LBD takes away and those it leaves. Briefly, it takes away the ability to multi-task, generalize, empathize or prioritize. Without these skills,<br />
<ul>
<li>Frank can only react. He can no longer choose between two ideas, change his mind or make judgments.</li>
<li>Frank’s brain now accepts the first information about a situation that it receives as an unchangeable fact, his TRUTH.</li>
<li>He cannot compute concepts like distance and time. He must function totally in the here and now.</li>
<li>Everything is either/or: black or white, is or isn’t, yes or no. There are no maybes, ifs or laters, no distances like near or far, no graduations like a little or a lot. Frank is either very hungry not hungry at all, extremely angry or not angry at all, etc.</li>
</ul>
<b>The Magic of Conscious Choice. </b>Making a conscious choice to try a different way of responding to your loved one can be magic. Even though Frank can no longer make choices or initiate change, he can follow. Thus, when Mary changes her own behavior, Frank can follow her lead and yes, then he can change too!<br />
<br />
Learning how the dementia-damaged brain functions is the first step in this process. Then she can use this information as a guide for choosing a response to Frank. When Mary makes these conscious, thought-out choices instead of reacting automatically, she is much more likely to be successful in leading Frank away from the circumstances driving his behavior. <br />
<br />
Next week’s blog will be about emotions and the magic of empathy.<br />
<br />
For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br />
<br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.<br />
<br />The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-13327815435951345122020-09-18T07:24:00.000-07:002020-09-18T07:24:00.159-07:00The Magic of the Right Tools, Pt. 1Jim monitors several online LBD caregiver support groups. Lately, he’s been reading a lot of entries from distraught care partners who are can’t understand why their old tried and true ways of interacting with their loved one no longer work.<br />
<br />
When we talk about tools for managing a loved one’s apparently irrational behavior, we need to start with a couple of things that may not appear to have anything to do with the behavior that is showing up. We call these the checks: checking the health and environment. Our books about LBD (see below) all have chapters that address these issues. But briefly:<br />
<br />
<b>Health Checks:</b> Dementia changes the rules. But somethings don’t change, especially concerning health. Your loved one still has the same health issues, except that now dealing with the dementia takes up a lot of the body’s reserves and so their health problems may get worse. Infections are also much more common. All of these can cause your loved one pain and distress. <br />
<ul>
<li>When a person has lost the ability to communicate, which can happen on with LBD, they will use behavior as communication. </li>
<li>Even if they can communicate, they may not even be aware of a specific pain—they just feel bad and again, express their pain with behavior.</li>
</ul>
Before you consider any other reason for your loved one’s behaviors, check their health. Look for bruises, consider a urinary or other infection and check other health issues specific to your loved one. You might be surprised at how fixing one of these can change their behavior--like magic!<br />
<br />
<b>Environment Checks:</b> Dementia changes so much that your loved one really needs the stability of an unchanged environment. Familiarity is a friend and change is the foe. In an environment where you loved one feels comfortable and safe, unwanted behavior decreases.<br />
<ul>
<li>Keep your home décor the same. Even holiday decorations can be an unwelcome change and should be used sparingly. </li>
<li>Set up routines and do everything with your loved one the same as much as possible. Routines are magic for helping your loved one to feel in control of their ever-changing life. The more routines in their life, the safer they feel. And the safer they feel, the less behavior you can expect.</li>
</ul>
Then, if you’ve determined that to the best of your knowledge, the reason for the behavior isn’t health or environment related, it is probably due to YOUR behavior! Yes, yours! But the good news is that unlike your loved one, who can't make changes, YOU can change. You can learn new ways of relating with your loved one. New tools. With these, you can change your behavior and then, lead your loved one into changed behavior of their own.<br />
<br />
Next week’s blog will discuss how dementia changes the brain and address why it is necessary to change your behavior if you want your loved one’s to change. <br />
<br />
For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br />
<br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-91871714190972676762020-09-11T06:00:00.000-07:002020-09-11T06:00:05.689-07:00Caring for the Caregiver During the Pandemic<i>This article, written by Michele Grigaitis- Reyes DNP, FNP-BC CNRN, FAAN, was borrowed from the <a href="https://fe8c1373776c077476.pub.s7.sfmc-content.com/yjmoupzndme">Beacon</a>, a newsletter from Phoenix's Banner Health. We've attended the LBD caregiver support group Michele facilitates there and can attest that she is very familiar with LBD and all its challenges.</i><br />
<br />
Now in addition to you being the primary caregiver to your loved one, your activities are restricted. Your loved one may be seeming to decline as time goes on. You both are likely at high risk for complications if contracting the virus and likely your families and friends are telling you to “wear a mask and stay home”. Something as simple as going to the grocery is fraught with decisions- do you go in the store? Do you take your loved one? You no longer have the ability to access some of those respite activities that were so helpful to you. Even visiting with your family is limited. An already stressful role is now exponentially increased. So, what can you do?<br />
<b>1. Eat a healthy diet. </b>Both you and your loved one will benefit from maintaining a typical diet. On occasion If possible, order takeout from that restaurant you both like, or go for a drive and get lunch from a drive thru<br />
<b>2. Neither you nor your loved one will benefit from adding or increasing alcohol.</b> Limit your intake to no more than you did prior to pandemic. The National Institute of Aging recommends no more than 1 glass daily for women or 2 for men.<br />
<b>3. Get plenty of sleep. </b>Lots of research shows sleep is an under recognized and under-treated problem in caregivers. We know that “role overload” is associated with poor sleep quality, and currently the restrictions of the pandemic would lead most, if not all, caregivers to overload.<br />
<ul>
<li>Stick to a sleep schedule, even on weekends. </li>
<li>Be sure your exercise is 4-5 hours before bedtime. </li>
<li>Keep the bedroom cool, and turn of that television, tablet, or cell phone! The lights associated with these are known to affect sleep. </li>
<li>Be sure to have bright light exposure during the day.</li>
</ul>
<b>4. Regular exercise is very important.</b> Perhaps you played golf, or pickleball, or went to the Silver Sneakers program. Or, maybe you didn’t really exercise at all. Now may be a good time to start. There are exercises you can do at home. Perhaps you and your loved one could take a walk every morning. You can do simple exercises with items you have at home. You can find a step by step plan, with pictures, at <a href="http://www.nia.nih.gov/">www.nia.nih.gov</a> and type in exercise.<br />
<b>5. Establishing a routine </b>is very important, and now more so both for you and your loved one. Eating meals at the same time and your sleep schedule at the same time nightly. Try to do some exercise 3-5 times a week. Try to include an enjoyable activity each day or week.<br />
<b>6. Take breaks from watching, reading, or listening to the news. </b>Hearing about the pandemic non-stop is stressful for everyone. If television watching must occur, try to find channels that have pleasant or “happy” stories.<br />
<b>7. Use, or learn, relaxation techniques. </b>Yoga, Tai Chi, Mindfulness meditation, and other methods, can do wonders for your stress level. Even taking deep breaths for a minute or two can be helpful. There are a myriad of resources online.<br />
<b>8. Connect with others.</b> Reach out to families and friends. Call on the phone, or perhaps chat with the neighbor over the fence.<br />
<b>9. Connect with support groups.</b> Most groups are being held using some type of technology platform such as Zoom or Skype. These programs allow you to see each other. If you don’t have access to the technology, that’s not a problem either. Most have the option to call in on the telephone. <i>(You can find a list of online LBD support groups at <a href="http://lbda.org/">LBDA.org</a>.)</i><br />
<br />
<i>Thank you, Michele. Next week’s blog will be the start of a series about managing dementia-related behaviors.</i><br />
<br />
For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br />
<br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-52229551229827790012020-09-04T06:00:00.000-07:002020-09-04T06:00:01.137-07:00Dealing with Dementia During the PandemicThe pandemic has presented care partners with a whole new batch of concerns. <br />
<br />
For those with loved ones in a care facility, the biggest concern is being unable to visit them or be with them during times of stress such as illness, surgery or final days. You may understand the reason for the restrictions. You may know that the staff is doing their best to fill in the gaps. But this doesn’t stop the worry and guilt about deserting a loved one who can’t even understand why. There is no easy or perfect answer to this. What answer there is will usually require working with the staff to find ways to connect, ways like window visits, Zoom visits, phone visits and perhaps even outdoor visits—from a social distance. <br />
<br />
Then, once you’ve done all you can to maintain contact, you need to let go of the worry and guilt. Their job was to motivate you to act—and you’ve done that. Worry and guilt that hang around after their job is done are like rotten fish, obnoxious and unhealthy.<br />
<br />
Those who are caring for their loved ones at home have questions like these:<br />
<ul>
<li>How do I take care of myself when normal respite options are limited or unavailable? </li>
<li>How do I keep myself and my loved one safe? </li>
<li>How do I help my loved one, who has a dementia-related fear of change, deal with all the necessary changes? </li>
<li>How do I deal with the behavioral changes that often follow these changes?</li>
</ul>
There are no easy answers to any of these questions. And no single answer for any of them either. As with all dementia-related caregiving, there are many general answers but each must be customized to your own situation.<br />
<br />
<b>How do I take care of myself when normal respite options are limited or unavailable? </b>As care partners, we tend to be much more focused on how to care for your loved ones and this question often gets asked last, if at all. But as care partner advocates, Jim and I know that it is often the first question you should address. If you don’t take of yourself, you won’t have the energy, stamina or even the health to you need for the demanding job of caring for your loved one. That’s why n<i>ext week's blog will be about this very subject</i>.<br />
<br />
<b>How do I keep myself and my loved one safe from the virus?</b> Experts tell us that the safest thing to do is to stay home. Use online ordering, deliveries and curbside pickups instead of going shopping or eating out. You can find many more thorough guidelines online, but the basics are that when you do go out:<br />
<ul>
<li><b><i>Wear a mask—to protect others. </i></b> Yes, I know, you are sure you aren’t contagious. However, since there may not be symptoms, you can’t be sure. Wear the mask!</li>
<li><b><i>Practice social distancing—to protect yourself.</i></b> Keep at least 6 feet apart from others not in your family group. That’s the distance the virus appears to be able to travel from one person to another.</li>
<li><b><i>Get tested.</i></b> Experts say the more people who get tested, the better they can watch and control the spread of the virus.</li>
</ul>
<b>How do I help my loved one deal with the many changes?</b> Since your loved one may not be able to accept wearing masks, etc., you may find that the best bet is simply to stay home, or to go out by yourself when you need to. Other changes will be difficult explain too, like why no one comes to visit anymore. In fact, explanations are seldom helpful when reason isn’t an option. Try empathizing and sympathizing instead. If you find a way to agree, do so. And use patience, it is more soothing. Your friend here is time. As the new way of life becomes the norm, it will be less difficult for your loved one as well.<br />
<br />
<b>How do I deal with my loved one's increased dementia-related behaviors? </b>Sadly, you may be able to use empathy, sympathy and patience to relieve the pressure some, but your loved one will likely still be confused, uncomfortable and probably scared. These negative feelings lead to an increase of those unwelcome dementia-related behaviors.<br />
<br />
Our book, <i><a href="http://responsivedementiacare.com/">Responsive Dementia Care</a></i>, has many very practical suggestions for dealing with difficult behaviors like obsession, delusions and irrational anger. Do consider reading it. Past blogs have also already addressed various aspects of this issue too.<br />
<br />
A series of blogs reviewing our take on behavior management will start two weeks from now. The LEAD Principles are a guide for helping you lead your loved one away from behavior-causing themes towards those that calm and comfort. Following blogs will be about using these principles to manage obsessions, delusions and angry accusations, the three Jim has found discussed most in recent care partner groups. However, the Principles can be used with a variety of other behaviors as well.<br />
<br />
For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br />
<br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.<br />
<br />
<br />The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-12369588845918816812020-08-21T06:00:00.001-07:002020-08-21T06:00:01.501-07:00The Power of Being PostiveToday’s blog is one of my favorite Pat Snyder videos. Being positive is truly powerful. It doesn't just feel good. It IS good. Research shows being positive makes you not only happier but healthier and more energetic. Since being positive is contagious, so are the people around you--including your loved one. <br />
<br />
Being positive is not always easy. As a care partner, you may already feel overwhelmed. And this world is even more overwhelming right now. With each of these negative situations, I've added my own positive response. What is yours?<br />
<ul>
<li>A pandemic is changing and limiting our lives. It can be difficult for care partners to get needed help, for singles living alone in isolation, or for out-of-work people trying to exist without a paycheck. <i><b>My positive:</b></i> We are a healthy, active retired couple with interests that keep us from being bored--well, most of the time!</li>
<li>Several of our cities are hurting with protests and their accompanying police actions. I have a grandson in Portland. You may also have loved ones involved in one way or another there or in other cities. <b><i>My positive: </i></b>I am so proud of my grandson!</li>
<li>The media is bombarding us with negative and divisive political ads. I often wonder how much barely skirts the truth, if that. <i><b>My positive:</b></i> Although we avoid many ads by taping our shows, I have fun analyzing the ones I have to watch. I look for how they are trying to convince me of their "truth." Yes, that's my psychology background--but it takes me out of the gut reaction they want me to have.</li>
<li>Weather conditions have been extreme, with earthquakes and hurricanes and the like. For us in Arizona, it is record-breaking heat with very little of the usual monsoon rains. <b><i>My positive: </i></b>I'm so grateful for our well-functioning air conditioning--and for my new three-wheeler that I ride at 5am when it a little cooler.</li>
</ul>
Focusing on all or any of these issues can cloud the positives. But they are still there. In her video, Pat tells us how to look for the positives in our lives and use them.<br />
<br />
<a href="https://youtu.be/HyoxCgxl9aQ">Here's Pat's video.</a><br />
<br />
Notice that Pat doesn’t say that staying positive easy or that it comes naturally. It takes commitment and practice. I think it also takes forgiveness, self-forgiveness, that is, because you won’t always succeed. Don’t stay stuck in your failures but look for the lesson: Ask yourself: What can I do to make it easier to be positive next time? And then, move on. <br />
<br />
Pat tells you that being positive is a conscious choice and that the present is the only place where you have control. I’ve taught for years that guilt is mainly a futile effort to manage the past and worry is an equally futile effort to manage the future. When you let go of the guilts around what was and the worries of what might be, being positive right now gets a lot easier.<br />
<br />
For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br />
<br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-10040620437997337612020-08-07T06:00:00.000-07:002020-08-07T06:00:03.516-07:00Books About LBD Care PartneringThis week’s blog is about the books about LBD care partnering. Pat Snyder offers several in her video. The titles below are links to each of the books she recommends along with a few comments.<br />
<br />
Here is <a href="https://youtu.be/-fO1CyKO9ps">Pat's video.</a><br />
<br />
Books that Pat recommended (except for ours):<br />
<ul>
<li><a href="https://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?crid=29TE4JMI99KV&dchild=1&keywords=treasures+in+the+darkness&qid=1595343351&s=books&sprefix=Treasures+in+the+dar%2Caps%2C1310&sr=1-1"><b>Treasures in the Darkness</b></a> by Pat Snyder. Pat’s story is a must read, especially for those just starting out on their LBD journey.</li>
<li><a href="https://www.lbda.org/go/introduction-lewy-body-dementia-newly-diagnosed-patients-and-their-families"><b>Facing LBD Together </b></a>by the LBDA. This free booklet presents the basics and comes with Medical Alert Wallet Card.</li>
<li><a href="https://smile.amazon.com/dp/1617222747?tag=amz-mkt-edg-us-20&ascsubtag=1ba00-01000-a0049-win10-other-smile-us000-pcomp-feature-rscomp-wm-5&ref=aa_rscomp"><b>Dementia Care Partners Workshop</b></a> by Dr. A good way to learn the basics about dementia care partnering.</li>
<li><a href="https://www.amazon.com/dp/B01BL30HR0/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1"><b>Keeping Love Alive as Memories Fade</b> </a>by Deborah Barr. Practical suggestions for using aspects of your loved one’s past to help them function better in the present. </li>
<li><a href="https://www.amazon.com/36-Hour-Day-Alzheimer-Disease-Dementias-ebook/dp/B06XX2JRJ7/ref=sr_1_2?crid=V04D9VYZAWXG&dchild=1&keywords=36+hour+day+book&qid=1595348286&s=digital-text&sprefix=36hour%2Cdigital-text%2C213&sr=1-2"><b>The 36-Hour Day </b></a>by Nancy L Mace and Dr. Peter V Rabins. This is the first book Jim read when he started on this journey over 20 years ago. Of course, it has been updated many times since them.</li>
</ul>
These are the Christian daily devotional or meditation books recommended by Pat. If you want to find something more specific to your own spiritual beliefs check with your spiritual leader, but as Pat says, don't neglect this part of your journey--a healthy spirit makes the other parts of the journey easier.<br />
<ul>
<li><b><a href="https://www.amazon.com/Creating-Moments-Person-Alzheimers-Dementia/dp/1557534624/ref=pd_lpo_14_img_0/131-4476917-7893705?_encoding=UTF8&pd_rd_i=1557534624&pd_rd_r=3a63c25a-b375-4f84-bfa8-0655429a9191&pd_rd_w=VPYdf&pd_rd_wg=S3FOZ&pf_rd_p=7b36d496-f366-4631-94d3-61b87b52511b&pf_rd_r=WQWNNF1VK26BSWSAWPK6&psc=1&refRID=WQWNNF1VK26BSWSAWPK6">Creating Moment of Joy</a> </b>by Jolene Brackley.</li>
<li><a href="https://www.amazon.com/Grace-Unexpected-Journey-Devotional-Alzheimers-ebook/dp/B073PQMY46/ref=sr_1_1?crid=1AVJXUPK8VEQ3&dchild=1&keywords=grace+for+the+unexpected+journey&qid=1595348534&s=digital-text&sprefix=grace+for+the+u%2Cdigital-text%2C210&sr=1-1"><b>Grace for the Unexpected Journey</b></a><span id="goog_562438174"></span><a href="https://www.blogger.com/"></a><span id="goog_562438175"></span> by Deborah Barr</li>
<li><a href="https://www.amazon.com/Jesus-Calling-Enjoying-Peace-Presence/dp/1591451884/ref=sr_1_6?dchild=1&keywords=Jesus+Always&qid=1595344607&s=books&sr=1-6"><b>Jesus Calling</b></a> by Sarah Young.</li>
<li><a href="https://www.amazon.com/36-Hour-Day-sixth-Alzheimer-Dementias/dp/1421422239/ref=sr_1_3?crid=2UWVFJ4VM20EF&dchild=1&keywords=36+hour+day+book&qid=1595344225&s=books&sprefix=36hour%2Cstripbooks%2C220&sr=1-3"><b>Jesus Always</b></a> by Sarah Young.</li>
</ul>
Pat also recommends two of our books. Links to these books are as always, at the bottom of this blog entry.<br />
<ul>
<li><b>Managing Cognitive Issues. </b>This book explores the early symptoms and diseases such as Parkinson’s that often progress into LBD and helps you know what to look for and how to deal with it. It also has a huge section on alternative therapies and how to use them.</li>
<li><b>Responsive Dementia Care. </b>Pat said this is her favorite of all our books and yes, it is mine too. Dealing with dementia-related behaviors is often the most difficult job for a LBD care partner. Add to this the fact that drugs can often make the situation worse instead of better. This book explains how these dementia changes the brain and offers a variety of methods, both with and without drugs, for dealing with the resulting behaviors.</li>
</ul>
There are a couple of our books that Pat didn’t mention because she doesn’t have them in her library. (We’ll have to change that!)<br />
<ul>
<li><b>A Caregiver’s Guide to Lewy Body Dementia.</b> Published in late 2010, this was the primary book for LBD caregivers for several years. Even today, with many other books out there, it continues to be a favorite of LBD support group members.</li>
<li><b>Lewy Body Dementia, A Manual for Staff.</b> Written for staff, this book includes the same basic information as the Guide does. However, it also includes a condensed version of the behavior management information in our Responsive Dementia Care book. We priced it reasonably so that care partners could give it to their helpers as gifts.</li>
</ul>
For more recommendations, you can visit LBDA.org and check out their <a href="https://www.lbda.org/category/4114/books-on-lbd-and-dementia-caregiving.htm">books page.</a><br />
<div>
<br />
For more information about Lewy body disorders, read our books:<br />
<a href="https://www.amazon.com/dp/193260393X?">A Caregiver’s Guide to Lewy Body Dementia.</a><br />
<a href="https://www.amazon.com/Managing-Cognitive-Issues-Parkinsons-Dementia-ebook/dp/B07KW92PB5/ref=sr_1_13?crid=RO2T09M1TWTI&dchild=1&keywords=lewy+body+dementia+books&qid=1595346191&s=books&sprefix=Lewy+body+dementia%2Cstripbooks%2C213&sr=1-13">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://www.amazon.com/Lewy-Body-Dementia-Manual-Staff-ebook/dp/B081XCHHJF/ref=sr_1_1?dchild=1&keywords=Lewy+manual+for+staff&qid=1595346345&s=books&sr=1-1">Lewy Body Dementia, A Manual for Staff</a><br />
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Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.</div>
The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0tag:blogger.com,1999:blog-1074151567956258470.post-46552062900330056452020-07-31T06:00:00.001-07:002020-08-02T01:20:24.036-07:00Care Partner Finances and COVIDFor those of you who have been enjoying Pat's videos, she will be back next in four week. For now, we are taking a break to discuss finances, often a difficult subject for the dementia care partner.<br />
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Dementia care tends to be very expensive and LBD care can be even more so. Therefore, I’ve invited Judy Baker, of the <a href="http://seniorcaregiveralliance.org/">Senior Caregiver Alliance</a> to provide you with some literature about finances with a special focus on the effect that COVID might have on them:<br />
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<a href="https://www.kff.org/coronavirus-policy-watch/retirement-insecurity-in-time-of-covid-19-next-shoe-to-drop/">Retirement Insecurity in the time of COVID</a>. Many of us are already retired, or are seriously considering retirement. This article is an overview of this subject.<br />
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<a href="https://www.annuityfreedom.net/financial-literacy/seniors-debt/" rel="noopener noreferrer" style="color: black;" target="_blank">Financial Literacy for Older Adults</a>. This article gives an overview of those financial situations that retirees tend to face and then offers some suggestions about how to organize your retirement finances.<br />
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<a href="https://www.johnahartford.org/dissemination-center/view/coronavirus-disease-covid-19-resources-for-older-adults-family-caregivers-and-health-care-providers">Coronavirus Information for Older Adults and Caregivers</a>. This article is perhaps the most valuable and useful of all of Judy’s suggestions. It contains a long list of resources about almost anything COVID related and how it affects you and your loved one.<br />
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<a href="https://www.aarp.org/politics-society/advocacy/info-2020/coronavirus-economic-impact-older-workers.html">Coronavirus Impacts on Older Workers</a>. This article is mainly for those of you still in the workforce, and most applicable to those who are caring for a parent while still trying to earn a living.<br />
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The next blog will be one about making sure your financial Power of Attorney is good.<br />
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For more information about Lewy body disorders, read our books:<br />
<a href="http://lbdcaregiversguide.com/">A Caregivers’ Guide to Lewy Body Dementia</a><br />
<a href="http://managingcognitiveissues.com/">Managing Cognitive Issues in Parkinson's and Lewy Body Dementia</a><br />
<a href="http://responsivedementiacare.com/">Responsive Dementia Care: Fewer Behaviors Fewer Drugs</a><br />
<a href="https://amzn.to/2ZuIAQu">Lewy Body Dementia: A Manual for Staff</a><br />
<br />
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.The Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.com0