The Whitworths of Arizona, bringing science to you in everyday language.

Friday, August 7, 2020

Books About LBD Care Partnering

This 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.

Here is Pat's video.

Books that Pat recommended (except for ours):
  • Treasures in the Darkness by Pat Snyder. Pat’s story is a must read, especially for those just starting out on their LBD journey.
  • Facing LBD Together by the LBDA. This free booklet presents the basics and comes with Medical Alert Wallet Card.
  • Dementia Care Partners Workshop by Dr. A good way to learn the basics about dementia care partnering.
  • Keeping Love Alive as Memories Fade by Deborah Barr. Practical suggestions for using aspects of your loved one’s past to help them function better in the present.
  • The 36-Hour Day 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.
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.
Pat also recommends two of our books. Links to these books are as always, at the bottom of this blog entry.
  • Managing Cognitive Issues. 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.
  • Responsive Dementia Care. 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.
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!)
  • A Caregiver’s Guide to Lewy Body Dementia. 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.
  • Lewy Body Dementia, A Manual for Staff. 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.
For more recommendations, you can visit LBDA.org and check out their books page.

For more information about Lewy body disorders, read our books:
A Caregiver’s Guide to Lewy Body Dementia.
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia, A Manual for Staff

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.

Friday, July 31, 2020

Care Partner Finances and COVID

For 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.

Dementia care tends to be very expensive and LBD care can be even more so. Therefore, I’ve invited Judy Baker, of the Senior Caregiver Alliance to provide you with some literature about finances with a special focus on the effect that COVID might have on them:

Retirement Insecurity in the time of COVID. Many of us are already retired, or are seriously considering retirement. This article is an overview of this subject.

Financial Literacy for Older Adults. 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.

Coronavirus Information for Older Adults and Caregivers. 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.

Coronavirus Impacts on Older Workers. 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.

The next blog will be one about making sure your financial Power of Attorney is good.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, July 17, 2020

Medication Mantras

In the third of a series of videos about LBD and the medical system, Pat Snyder, author of Treasures in the Darkness and LBD teacher, talks some more about LBD and medication. Because she doesn't list the mantras until the end, I'm listing them here so you can connect each one with what she says about it.
  • Make one change at a time
  • Start low
  • Go slow
  • Learn what drugs to avoid
  • Be excited about what drugs are available
Here's Pat's 7.5 minute video: Medication Mantras

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, July 3, 2020

Avoid These Drugs!

This week's video by Pat Snyder, author of Treasures in the Darkness and LBD teacher, lasts over 18 minutes, but it is well worth watching. LBD can be very sensitive to so many drug and all LBD care partners need to know about these. In fact, you will want to take notes! And then you will want to go to some of the sources she recommends and learn more. And then you will want some references that you can refer to over and over.

I've listed her recommendations here along with some of my own:
People's Pharmacy Anticholinergic Drug List

Treating and Diagnosing Lewy Body Dementia

Beers Criteria, 2019 version

I also recommend our book, Responsive Dementia Care, which has a huge chapter on drug sensitivity and management as well as several chapters on a variety of non-drug options and alternatives.

Here is Pat's video: Avoid These Drugs When You Can with Lewy Body Dementia
Next week: Pat's video about Medication Mantras.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, June 19, 2020

LBD and the Medical System

The next three week's videos by Pat Snyder, author of Treasures in the Darkness and LBD teacher, will be about dealing with the medical system and drugs. In this first one, Pat takes a little over eight minutes to talk about the LBD and the medical system in general. She makes some very important points:
  • Find a diagnosing and treating doctor who respects you as a part of the treatment team.
  • Avoid emergency rooms and hospitals because the staff all too often does not know how to treat our loved ones in a way that supports them instead of damages them.
  • Of all dementias, LBD is the most responsive to treatment--as long as it is the right treatment.
Here's Pat's video: Lewy Body Dementia Diagnosis? Here Is Some Hope!

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, June 5, 2020

Summer Tribulations

We are starting out summer schedule this month. While we are in a stay at home mode like most of the rest of you, we aren’t out, finding new material or meeting people with stories to share. This means that my “creative juices” don’t get triggered as much. We are also updating our computers and so I’ll be spending my time learning new programs and systems.

Today, I’m writing about the times we are in, where many things have combined to make a care partner’s already difficult job even more difficult.
  • Many of you who are already fighting your own battles with LBD. Who needs more? But there is more and it keeps coming!
  • Covid19 had caused issues for each of us: lack of supplies, poor access to medical help and loss of contact with family and friends. It has hit our economy so that many of you may be finding it difficult to pay bills. Perhaps the most difficult is the poor if any access to our loved ones in care facilities.
  • Then we have a year where summer isn’t even here yet but temperatures are already heating up, bringing fires that cause evacuations and sometimes, permanent loss of homes. In other places, hurricanes and other weather-related are causing the same kind of problems.This would be bad enough in normal times but trying to stay safe in the Covid era when you are homeless becomes impossible. Trying to care for a loved one with LBD is made even more difficult when you can’t place them in a care facility until you can find a new home.
  • Now add the unrest with the protesters. We support their concerns and have been thrilled that many have chosen to protest peacefully and that in many cases, the police are supporting rather than fighting the protesters. We are appalled at the rioters and looters that give the protesters a bad name and damage their cause. But the unrest makes it more difficult for those of you caring for loved ones to get out of your home to do shopping or do other necessary errands. Just one more tribulation to add to an already long list.
So those are the negatives. What are the positives? Sometimes, they are hard to find but I believe that such adversity helps us to better appreciate what we do have. For each of us, that list is going to be different. Do you have a safe, comfortable home to stay in? Do you have stores that deliver or stay open at extra hours? (We go shopping now at 6am!) Do you have air conditioning? Do you have family or friends who show up anyway and help out? Do you have enough to eat, a place to sleep? Do you have a computer and are you learning how to do Zoom meetings? How to learn via pod casts? How to use YouTube? Take some time today and find at least three things you are grateful for. Then think about these…and possibly more!...just before you go to sleep tonight.

Finally, as a part of our summer schedule, I invite anyone who is interested to submit a 300-800 article as a guest blogger. Here are the requirements:
  • The content must be about dementia or dementia caregiving.
  • Articles about LBD and LBD caregiving are preferable.
  • Articles must not be sales vehicles for anything. I always delete any comments that are testimonials for herbal or drug cures. This goes for guest articles as well.
  • You can discuss generally something that people might buy, for example, the “Intelligent” speakers that Amazon, Google and others sell. If you mention anything by name, you need to mention at least three, share what you like about each and provide references for all of them.
  • I will proof the article and will usually make some changes to fit our format. I will always send it back to you for approval before I post it on the blog.
  • I will always add a paragraph as introduction and often, I will add comments within the article that are clearly from me.
I hope I some of you will send me some articles!
Two weeks from today, we start another series of YouTubes by Pat Snyder. She has been doing many of these and had developed a good following. We are honored to have her as our guest YouTube blogger!

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, May 29, 2020

Showtime and LBD

This week's video by Pat Snyder, author of Treasures in the Darkness and LBD teacher, is short, less than 5 minutes. But it speaks to a very important issue. Showtime, where a person living with LBD appears more normal for a period of time, is a symptom that can make diagnosis and treatment difficult. It can cause family members to doubt your stories about difficult behavior. Pat makes some very good suggestions for dealing with this symptom.

I'd like to add that your loved one has no control over when Showtime comes and goes. It just happens. We as humans all have urges to please people we respect, such as doctors and visiting family members.  You and I can choose to act on those urges or not. Our loved ones can't. They have the urge and they act. Even though the behavior is subconscious, appearing "normal" is hard, exhausting work. Once it ends, your loved one will probably sleep for hours.

Pat recommends in her video that you go back and view her previous video on the Five Moving Parts (date) for more information about how Showtime comes about. I'd also recommend our books, especially Responsive Dementia Care, which focuses on behavioral issues. Both are great for sharing with others as well.

To watch this week's video, click on the title: Lewy Body Dementia and "Showtime"

Next week, Pat will speak about choosing a doctor and getting a diagnosis.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, May 22, 2020

Personify the Disease

This week's 15 minute video by Pat Snyder, author of Treasures in the Darkness and LBD teacher, talks about making the disease the third person in the room. "It's Lewy, not my loved one." Or to a loved one: "Lewy is messing with your ability to talk." Blaming the disease makes it easier to deal with difficult behavior. It also decreases your loved one's frustration.

But she also talks a lot about some other very important things, including improv acting , being legally prepared and the value of sleep. I hope that eventually she'll do a video about each of these subjects because they are also very important.

Click on the title to watch the video:  Personifying the Disease.

Next week, Pat talks about Showtime, a common LBD symptom that often goes unrecognized even by the medical community.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, May 15, 2020

LBD's Five Ps

This week, Pat Snyder, author of Treasures in the Darkness and LBD teacher, talks about LBD's Five Ps. Pat's primary mission is to make your dementia journey more gentle for everyone. In this one, Pat teaches us five ways to act to maintain a safer, more gentle environment. (Remember YOU can make choices. Your loved one can't--they must simply react to the first urge they get.)
  • Be positive
  • Be proactive
  • Be perceptive
  • Be persistent
  • Personify the disease
Enjoy this 8.5 minute video by clicking on the title: A More Gentle Dementia Caregiver Journey: The 5 P's.

Pat has already expanded on one of these parts: Personify the disease. That will be next week's video. I hope that eventually, she'll do a video on each of them.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, May 8, 2020

LBD's Five Moving Parts

This week's video is from Pat Snyder again. It is actually her first video about living with her husband John, who died with Lewy body dementia in 2015. She's been teaching and writing about LBD since well before that and her videos are well worth listening to. In this one, Pat describes five major symptoms of LBD in alphabetical order--to make them easier for you to remember. A couple of comments:
  • I find it interesting that she connect behavior and mood. There is definitely a connection and but I've usually listed them separately.
  • I teach that LBD is more of a thinking disorder than a memory disorder. Pat also discusses how LBD's cognitive issues are different from the memory loss common with Alzheimer's.
I could go on making comments but I think the best thing is for you to just listen to Pat's video. Jim and I may teach about LBD a little differently, but we definitely agree with everything she says. I especially like her final statement. "Of all dementias, LBD is the most responsive to treatment--as long as it is the right treatment." What a positive ending!

Click on the title to see the video: Five Moving Parts.

Next week, Pat again goes alphabetical and talks about the Five Ps.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, May 1, 2020

The Nightmare of Poop

For the next few weeks, I've invited Pat Snyder, author of Treasures in the Darkness, to talk to us via Youtube. Her first video is about a subject that most dementia care partners have to deal with eventually and one that can be very stressful. In fact it was several stressful entries in an online support group that prompted Pat to make this video. Right now is a fairly stressful time already and we don't need more stress. I hope that her suggestions help you to limit the stress in your life--and your loved one's!

And so set aside 20 minutes to sit back and relax while you watch Pat's video on The Nightmare of Poop.

Next week, Pat will be back with another video.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, April 24, 2020

Dealing with the Isolation

We know a lot of you are dealing with how to care for a loved one at home with little outside connections.

  • Do keep up with your friends and support people by phone. Consider a phone tree, where each of you is responsible for calling someone in your group and reminding that person to call whoever they are responsible to call.
  • Do use viewing programs like Skype, FaceTime or Zoom to connect with friends and groups.
  • Do learn to order online and have your supplies delivered. Deliveries are often free right now.
  • Do stay safe, and abide by all the safety measures they are asking us to use--hand washing, etc.

We know others of you are dealing with having a loved one in a care facility that you aren't able to visit.

  • Some care partners say they have found that they can work with staff to have their loved ones at a window so they can wave and at least see you for a while.
  • Some care partners are choosing to move into the facility and sleep on a lounge chair next to their loved one's bed. Care facilities may allow this, especially if it makes less work for them. But you will have to abide by their rules and you won't be able to go in and out as you normally would.
  • Make daily telephone calls if your loved one can still use a phone. 
  • Staff may be able to help you set up Zoom or FaceTime meetings but they are awfully busy right now.
  • Give staff extra kudos...bake them cookies, send them cards, let them know how much you appreciate them. A staff that feels appreciated will treat your loved one better--it's just human nature!

These suggestions aren't anywhere near the whole answer and they may not even help you at all. If you have found something that does, be sure to write a comment here and I will publish it. Be aware that I don't publish anything commercial or anything with a website link in the comment.

In the meantime, stay safe.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, April 17, 2020

Easter Sunday

Last Sunday was Easter. It was a different experience for us. We went to church online. We heard familiar voices saying needed words of encouragement and sang along with familiar songs to lift our spirits. We missed the greeting and meeting that goes with church in our minds, but we appreciated the chance to commune with the more than one hundred people who participated online with us. We hope you had similar experiences on this special day.

That service reminds us of how we all must learn new skills and new ways of connecting. We, as humans, need to connect with others and that is more difficult right now. But we can make phone calls and send emails. We can learn to use Zoom for gathering in a group. I'm sure there are other ways too that this once computer savvy but now way behind the times senior doesn't know. Give them all a try and use what works!

LBD care partners have an extra challenge in that their loved one may not understand what is happening. LBD tends to make groups confusing and so your loved one may actually appreciate social distancing and quarantine. Take this as a gift; one less thing to be concerned about!

Another gift for me is the appreciation I have for those I do connect with. I don't take this so casually anymore. Feeling grateful is very healthy and I've had a chance to feel grateful a lot lately. Sad, too, I admit, and concerned for our country as a whole and for individuals who are dealing with much more difficult situations than we are.

By the way, we welcome you to comment. If you add your phone number I will call you, so that you can ask questions, share experiences or just connect with another human. Since I review all comments first before posting them, your number will stay private and your comment will only be posted if you want it to be. Also,  we do not post any message that includes another website link.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, April 10, 2020

Hallucinations, Pt 2: Management

This is the second in a series of three blogs about hallucinations based on Tanis Ferman's presentation at the 2019 ILBD Conference.

First, let me repeat that hallucinations only need management if they are distressing to your loved one. If they are distressing to you, this means that you need to find a way to accept your loved one's behaviors. Otherwise, he/she will pick up on your negative emotions and mirror them, with a likely increase in hallucinations or worse, in their intensity.

However, if a hallucination is stressful, there are some ways to help your loved one de-stress. This week, we are focusing on what Tanis calls "solution-focused management," which involves identifying patterns and triggers.

Once you know about the trigger, it is often easy to solve the problem. Even more important, it is often possible to prevent the behavior by removing or avoiding the trigger. For example, Iris, tells about her husband Eric, a Vietnam veteran, who becomes violent when he "sees" war battles and delusionally believes that he's involved.

How is this is a problem?
  • It's a problem for Iris because she's afraid she'll be hit.
  • It's a problem for Eric because he thinks he's being attacked by the enemy.
When does it happen?
  • It is most often the result of a dream that wakes Eric up acting out what he had been dreaming.
Where does it happen?
  • In bed.
What happens before and after?
  • They often happen after a physically exciting scene on TV. It doesn't have to be about war. The last time, it was a football game.
  • After Eric wakes up fighting, Iris leaves the bed.
Who is around?
  • Usually only Iris. But it was triggered once, when an old buddy showed up and they got to reminiscing.
These answers tells Iris that she needs to monitor Eric's TV watching and ask his buddies to be careful what they talk about because both of these appear to be triggers. She also probably needs to find a different bed to sleep in. Emotion-based solutions may not be helpful with this type of issue because, with almost immediate violence involved, Iris will be less able to get past the negative emotions to where Eric can hear her. Her best solution is to limit the possible triggers and make sure she is safe.

Likely Triggers
  • Physical: Medications, dehydration, infection, not enough  exercise, pain, constipation, sleepiness, alcohol, mood.
  • Environment: Clutter, lighting, cues (TV), move misperceived objects
  • Task demands: Task too hard, causing stress, or too easy, causing boredom.
  • Fluctuations: Not actually triggers, but if you are aware of your loved one's pattern of fluctuations, you can usually choose activity times for when he/she is more aware which will decrease stress and increase awareness.
Next week's blog will be about dealing with hallucinations via what Tanis calls emotion and communication focused management.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, April 3, 2020

Hallucinations Pt. 3: Emotion and Communication

This last blog in this series about hallucinations combines what Tanis Ferman talked about in her 2019 IDLB Conference presentation with some of the information from our own book, Responsive Dementia Care: Fewer Behaviors Fewer Drugs.

Managing difficult hallucinations is much like managing any other difficult behavior.

Emotion-focused management:
  • Be aware of your loved one's feelings. "You seem ___________ (frustrated, aggravated, scared....)" These negative feelings are very strong. In fact, since your loved one probably has only one intensity, they are likely to be catastrophic. Therefore, they must be addressed before your loved one can pay attention to anything else.
  • When you truly listen and make an effort to identify the feelings involved, your loved one will feel heard, taken seriously and validated. With their negative feeling addressed, they can start to relax.
  • In addition, if you understand the feelings involved, this may help you address the situation itself. Remember anger is a secondary feeling. You are looking for the underlying feeling that is driving the anger or fear. Often this comes from residual feelings like a fear of abandonment or feelings of loss.
Communication-focused Management:

DO's
  • Do listen for feelings. These are going to tell you a lot more than the words do.
  • Do ask about it. Show some interest. Let your loved one know you are listening. (Remember to ask easy to answer questions, with no more than two well-identified choices and no open-ended questions.
  • Do make empathy statements (that's frustrating, I understand)
  • Do apologize. Yes! Apologize. If your loved one is accusing you of something, think about how you'd feel if the shoe were on the other foot and YOU believed someone had done to you what your loved one believes you've done. Then apologize the way you'd want to be apologized to.
  • Do respond positively (Great idea! Good job!) Your positivity will be mirrored by your loved one...but only if you've dealt with the negatives first.
  • Do monitor your non-verbals. Your loved one will believe your body language before your words. (Actually we all do!)
  • Do go along to get along. Go with the flow, think of it as a play in which you have a part. You have to follow your loved one's lead but you can move the action into a more comfortable direction as long as you are both on the same wavelength--in the same reality.
  • Do enlist the help of others. Ask for help, go to a support group. Share your concerns. There will be someone there who's had the same issues and may have found a way to deal with them that you haven't tried.
DON'TS
  • Don't argue. This triggers those demanding negative emotions and just makes things worse.
  • Don't quiz. Ask interested questions but don't badger. This makes your loved one feel defensive...and the negatives show up again.
  • Don't correct. This makes your loved one feel insulted. In his reality, he is not wrong and that's the only reality that counts.
  • Don't give too many details. This will make your loved one feel confused and inadequate.
  • Don't defend. This will make your loved one feel lied to. In his reality, you did what he says you did, thus your attempts at defense are insulting lies.
If none of this works, talk to the doctor about drug management with something like Sequel. Remember that people living with LBD are more sensitive to most drugs than the average senior, thus starting with very low doses is important. But if the low does doesn't work, ask the doctor to increase it until it does--or it causes unwanted side effects.

Finally, always remember that your stress will be picked up by your loved one and reflected back as behaviors...hallucinations, angry accusations, and so on. And so take care of yourself. Get enough rest and some "me time." The better you take care of yourself, the better your loved one will act!

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, March 27, 2020

Special Book Sale

Dear Readers,
We are interrupting our three part series on hallucinations to share a great offer with you. The second blog in that series will be here next week. But right now we want to offer you something to read while you self-isolate and take care of yourselves and your loved ones and so we are giving you our Award Winning Caregiver's Guide for FREE when you buy the bundle at a lower price than we've ever offered. We hope it helps a little.
Jim and Helen Whitworth

A LIMITED TIME OFFER!

All FOUR of our LBD-related books at the
LOWEST PRICE EVER!
  Award Winning Caregivers Guide
Managing Cognitive Issues
Responsive Dementia Care
Lewy Body Dementia Manual for Staff
This is a $85.70 value for a special price of $59.00
THAT'S A $26.70 SAVINGS!

BUY

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, March 20, 2020

Hallucinations, Pt. 1: What Are They?

Last week's blog was about understanding and managing fluctuations, from a presentation by a mentor of ours, Tanis Ferman, of the Jackson Florida branch of the Mayo Clinic. This next series of blogs are about the other part of her presentation at the 2019 IDLB Conference, understanding and managing hallucinations. I've added some information of our own as we go along too.

Visual hallucinations (VH), or perceived images of people, animals, objects occur in 60-75% of LBD. These images tend to be quite vivid and real appearing. Early in the disease journey, a person can often accept feedback from a care partner that the images aren't real. This is very common in late PD.

At one PD group Fred told us he saw "Little army men." He knew they weren't real because his wife didn't see them. "But, he said, they are fascinating. I enjoy them." However, as Fred's disease progresses and he loses the abstract thinking ability to compare, he must accept only what his own brain tells him. Then his little army men will be real to him.

That's when delusions (false beliefs) related to the image become common. These often become very involved. A friend of our told of her husband, Bill, who "saw" wolves in the back of their pickup and had many stories about their lives there. As with Bill, the hallucination happens and then the brain spins a story to make sense of it--to him if not to anyone else!

Auditory hallucinations are less common, occuring in about 30% of those living with LBD. These include sounds such as a doorbell, phone ring, music or muffled conversations.
Presence hallucinations are the feeling that somebody is present but just out of sight, behind or to the side perhaps. These occur but are even less common than auditory hallucinations.

Visual misperceptions (illusions) are very common in LBD. This is where an object is mistaken for something else. While these can contribute to delusions, they may also be easier to debunk. For example, a person may be able to accept that the dog they saw on the sofa was really a wadded up blanket that looked like a dog if they can touch it and shake the blanket out.

Visual misidentifications are where a person sees a person, object or location and identifies it as a duplicate or imposter. When the misidentification involves a person, usually someone close to the person, it is called Capgras syndrome. Recent research has found that Capgras is a visual dysfunction. If your loved one believes you are a look-alike imposter, try going out of the room and start talking before you come back into his sight. He will hear your voice and identify it as yours. Then when you enter, you are who he expects to see and who he does "see."

These visual symptoms all occur due to neuron loss in the areas of the brain that control sensory, especially visual, perception. They may also be partially due to an intrusion of dream sleep into wakefulness. Dan, a support group member tells about his deceased wife, Anita. She used wake up thinking someone was ringing the doorbell. Dan would dutifully get up and answer the door but no one was ever there.

Anita started out dreaming about the doorbell. The "sound" woke her up and became an auditory hallucination. Since Anita's thinking ability was diminished she believed the doorbells were real.
Insight, or the ability to tell the difference between reality and hallucinations, is affected when the thinking centers of the brain and their connections to the visual centers begin to fail.

Many hallucinations don't need management at all. If they are not distressing your loved one or making you unsafe, let them be. However, your loved one's reaction to their hallucination can often be stressful, to them or to you or most likely both of you.

Hallucinations can trigger delusional accusations or paranoid worries fostered by negative emotions such as ongoing fears such as a fear of abandonment or loss. In addition, any negative response is apt to be catastrophic, since the dementia-damaged brain doesn't do levels of intensity. Emotions tend to be either very intense or absent.

Next week's blog addresses some ways to manage these more difficult events.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, March 13, 2020

Understanding and Managing Fluctuations

This blog is based on a 2019 IDLBC presentation about fluctuations. This week's is by Tanis Ferman PhD, who is based at the Mayo Clinic in Jacksonville, Florida. Tanis is a pioneer in the work with LBD and one of our mentors.

Our bodies all have natural cycles of fluctuation in sleep, appetite, body temperature, hormone controls, alertness and blood pressure.

The fluctuations related to Lewy body diseases are different. They don't necessarily have a regular cycle or rhythm. They affect cognition but they can also affect motor function, communication and even behaviors. These fluctuations are not natural. They are caused by the loss of
  • dopamine, important for movement, attention and reward centers
  • acetylcholine, important for cognition, wakefulness and attention.
These fluctuations are not due to, but may be worsened by:
  • age, dementia severity
  • delirium (infection, dehydration, intoxication or withdrawal, metabolic issues)
  • medical conditions, neurologic conditions (stroke, seizures)
  • sleep issues, alcohol use, pain, discomfort
  • mood, catastrophic emotional reactions
  • medication side effects, including but not limited to:
    • anticholinergic agents,
    • dopamine agonists,
    • sedating medicines,
    • opiates,
    • oral steroids
Care partners talk about the "Good Times" and the "Bad Times." Loved ones may fluctuate between these two poles several times a day. They start out with mostly Good Times and occasional short bouts of "Bad Times." Eventually this changes to the opposite, with mostly Bad Times and occasional Good Times.  During the Bad Times, a person is drowsy, zoned out and unaware. They are easily distracted, tend to use words out of context if they can communicate at all, and find performing tasks difficult or impossible.  During the Good Times, a person is awake, lucid, and aware. They are able to focus (pay attention), can communicate better and can perform tasks more easily.  Managing fluctuations involves:
  • accepting them as a part of the LBD disease. Accepting allows you to let go of negative emotions that can make the symptoms worse and last longer.
  • looking for patterns so that you can adjust activities to fit your loved one's more aware parts of the day. When is your loved one's most alert time of the day? That might be the best time to plan personal care. When is the time of the day when Bad Times are more likely to appear? That might be a good time to schedule naps.
Thank you, Tanis. Next week's blog will be a review of Showtime, which is probably the most difficult to deal with kind of cognitive fluctuation.

For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia Managing Cognitive Issues in Parkinson's and Lewy Body Dementia Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, March 6, 2020

Love & Sex, Pt 5: Spouses and Adult Children

This is the last in a series of blogs about dementia, love and sex. Past blogs have addressed the changes dementia and dementia caring makes in relationships, the changes it causes to a loved one's brain and feelings.

When you are aware of the changes that dementia causes, it is easier to accept these behaviors as a part of the disease and then move on to find ways to prevent or avoid unwanted behavior. That's what last week's blog was about. However, it is likely that you may still have to deal some. This week we discuss how sposues and adult children can use Responsive Dementia Care's last three As to deal with these behaviors when they occur.

Attitude. Developing the right attitude goes a long way towards more helpful actions.
  • Empathy will allow you to see the issue from their viewpoint. This is the only one that counts, since only you can change. (See previous blogs about this.)
  • Accepting your loved one's views and needs will prevent negative feelings from interfering. As long as strong negative emotions are present, your loved one can't "hear" you emotionally and will not respond positively.
Action. You are the only one who can chose how to act. You loved one can't. However they can mirror your actions, and follow your lead--if they are calm enough to "hear" you. Your goal is to behave in a way that calms your loved one and allows you to access their attention enough to refocus it onto something more acceptable.
  • Last week's blog recommended that you proved plenty of emotional support throughout the day. This continues to be one of the most important things you can do.
  • Gently reject an inappropriate approach by putting it off. A spouse might smile and even touch gently, but then say firmly, "Not now, dear" and move away. Alice said that when her husband was amorous during the day, she'd smile and tell him, "as soon as I finish this." Then she made sure her task lasted long enough for him to forget his request.
  • Other spouses recommend cuddling, which even they can enjoy.
For the adult child, the issue is more difficult and embarrassing. Here are some suggestions. Of course, these can also work with spouses:
  • Simply ignore the sexual aspect of an advance and respond in a friendly way with something distracting. (Don't worry about this bringing on more episodes. Unlike a child, a person living with dementia doesn't learn.) Most of these advances involve a need for attention. When you give this but don't reward the sexual message, the inappropriate behavior often decreases.
  • If the behavior continues, shake your head, frown and move away if you can. Your nonverbal cues will be more helpful than your words. Remember the directions from last week to avoid anger, defending or explaining, all of which will make the situation worse.
  • Move your loved one to a different location. This takes them away from whatever was triggering the behavior.
Averting: Refocusing your loved one's attention by moving the action away from the unwelcome behavior and towards something more acceptable. Such distractions work because dementia makes it difficult to think about more than one thing at a time but ONLY if you have validated your loved one's feelings enough to get their attention. If they are still strongly focused on what they want, your efforts will fail.
  • Suggest going for a walk. Exercise can reduce sexual urges.
  • Offer a massage of hand, feet or even back. Therapies that involve physical contact can divert the person's attention away from more sexual thoughts.
  • Other distractions are sweets (always helpful!) and other things the person enjoys such as card game, photo sorting and viewing or even something you "need help with" like setting the table.
Finally, remember nothing works for everyone. You will likely have to try a variety of things to find out what works best with your loved one. Feel free to share what you've learned in the comments below.

Next week is about cognitive fluctuations, a subject discussed at the 2019 National DLB Conference by LBD expert, Tanis Ferman.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, February 28, 2020

Love & Sex, Pt. 4, Preventing and Avoiding the Behaviors

Last week's blog was about unwanted touching. This week's blog describes some dementia-related changes and offers some suggestions for limiting the resulting behaviors. Last week we introduced Stan, a man with early dementia. What he wrote bears repeating in this blog:

"Despite being 77 years old, I find myself having a great many sexual thoughts and feelings. Fortunately, these things have only been in my mind. None of this is at all characteristic of my personality. I attribute this to the changes taking place in my brain."

Stan is right about the changes in his brain. So far, he has been able to avoid acting on his thoughts but as his dementia advances, this will likely change. Dementia damages some areas of his brain less than others. One of these more functional areas is where he stores forbidden words and thoughts. Thus, Stan is beginning to think more inappropriately.
  • His sensory abilities will continue to function as cognitive abilities decrease, making such feel-good activities as sex more attractive.
  • His impulsiveness will increases, so that he will act upon his thoughts without stopping to consider their social acceptability.
  • As illness increases Stan's feelings of inadequacy and insecurity, sex may be the way he tries to maintain his self-esteem.
  • As dependence increases, it will foster a clinginess that makes sex even less attractive to his already overburdened care partner.
  • As his empathy fades, he will have little understanding of why his spouse rejects once welcome overtures, why his adult child is repulsed by such behaviors or why friends are offended by crude words.
  • The autonomic nervous system which controls a his sexual organs weakens. Thus, even though Stan may act out his sexual thoughts with words and touching, he may not be able to function sexually--adding more feelings of inadequacy and possible jealousy.
So, how can care partners deal this? Last week's blog contained a short explanation of the 6 As, awareness, arrangements, avoidance, attitude, action, and averting. This week, we will discuss the first two: Awareness and Avoidance.

Awareness. The first blogs in this series have mainly been about awareness of how the dementia brain functions. Becoming aware of these changes helps you to develop helpful attitudes, which we'll talk about next week. But it also helps you to develop ways to prevent the behavior from happening.

Arrangements. By thinking ahead and making preparations, you prevent some behaviors from happening at all. Mainly this is identifying triggers and finding ways to avoid, change or respond to them
  • Boredom can be decreased with a fidget blanket or regular chores. Amanda reported, "I guess Dad was using sex to alleviate boredom. When I gave him a task, like a basket of clothes to fold and refold, he's happier and doesn't bug me with inappropriate touching." The chores also make him feel helpful and relieves feelings of inadequacy.
  • A need to touch may be satisfied by a stuffed animal or doll. My mother had a stuffed animal she carried with her everywhere.
  • Feelings of inadequacy, insecurity and fear of loss can be alleviated with ongoing emotional support throughout the day. Diane stated: "Once I was more aware of Dick's emotional needs, I found it more important and easier to show care, compassion and conviction that I would be there for him always. That way, his anxiety levels drop and he is less afraid when I'm not there every moment."
You can do some other preparation too:
  • For friends, neighbors and other family members, make sure they know about your loved one's dementia and the way it can remove inhibitions. Remember, your loved one can and often will do Showtime around other people, which can mask the dementia.
  • For strangers, consider making up a card that you can hand out as an apology. It can say something like "Please excuse my loved one. She/he has a brain disorder that increases sexual thoughts and decreases inhibitions."
Avoidance. Avoidance is not avoiding the possibility that these unwanted behaviors can occur. Rather, it is learning to avoiding those behaviors of your own that trigger your loved one's unwanted behavior.

  • Avoid attitudes and actions that trigger negativity. Love ones tend to respond to anger with more anger, to see defending as downright lying, and to find explaining belittling. Avoid words and that don't match your actions. They will believe the actions.
  • Avoid mixed messages, such as words and actions that don't match. Maintain continuity. Avoid allowing something for even a short while one time and forbidding it the next.
  • Avoid nonverbal cues that might inadvertently encourage the behavior. You want your loved one to feel cared for and appreciated, but non-spouses especially will not want their touching to convey sexuality. Even spouses will not want to trigger a sexual response at the wrong time. This can be tricky because touching itself is so beneficial. In fact,  regular loving touch actually tends to decrease rather than increase the likelihood of inappropriate sexual behavior especially when the behavior is an expression of neediness.

Next week's blog will be suggestions for how a spouse or an adult child can deflect unwanted sexual approaches when they occur and do it in ways that cause the least stress for both parties.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, February 21, 2020

Love & Sex, Pt. 3: Inappropriate Touching

Last week's blog was on the value of touch. However, not all touch is welcome. Sexual touching is a good example of this. Making love can be a very important part of a couple's relationship, even quite late in life. When dementia changes the relationship to one that's more nurse/patient relationship this can change.

For the spousal care partner, romance is often weaken by a combination of tiredness and normal dementia care jobs like helping a loved one dress or get to the toilet. Jobs like cleaning up smell messes definitely don't help, nor do the personality changes that often occur with dementia. Care partners find themselves caught between wanting their loved one to feel like the person they once were and their own growing feelings of distaste towards what used to be pleasant sexual contact.

When the care partner is the loved one's adult child, even custodial touching can feel awkward. While a spouse might be comfortable providing intimate care for their loved one, doing the same for a parent isn't so easy for either person. In this case, the metamorphous into a nurse/patient relationship may be a welcome change that reduces uncomfortable feelings of embarrassment.

For the person living with dementia, the change is more drastic. First, they may still perceive their relationship with their caregiver as the way it used to be, not the patient/nurse one the care partner experiences. However, we have certain social expectations concerning sex, and dementia can erode a person's recognition of these and their importance.

Stan, a man with early dementia wrote: "I find that more crude language comes to mind than ever before. Also, despite being 77 years old, I find myself having a great many sexual thoughts and feelings. Fortunately, these things have only been in my mind. None of this is at all characteristic of my personality. I attribute this to the changes taking place in my brain."

Stan's description of his thought processes is a unique look at evidence of the type of brain changes that eventually lead to inappropriate behaviors. We seldom see the behaviors themselves until the disease had eroded the person's perceived need for restraint. However, thoughts like Stan's are definitely symptoms of the disease. Sadly, this increased sexual interest tends to occur at the same time that care partners are getting more turned off. More sexually aware and needy but with little or no inhibition, the loved one acts out these feelings--anywhere, anytime with anyone.

But it isn't just brain changes. As a person begins to feel less independent, attractive, functional or adequate, they may turn to sex for proof of their value. With appropriateness out the window, sexual advances at any time of the day or any place can be expected. In fact, the advances are most likely when the care partner is most busy, especially if the job doesn't directly include the loved one.

All is not hopeless. Using Responsive Dementia Care, you can deal with these behaviors.
  • Awareness: Understanding dementia's effects on your loved one's brain.
  • Arrangements: Preparations that prevent unwanted behaviors.
  • Avoidance: Avoiding attitudes and actions that increase negative emotions, confusion and unwanted behaviors.
  • Attitude: Using acceptance and empathy to see the issue from their viewpoint.
  • Action: Acting to give them the emotional support they need.
  • Averting: Turning aside the unwanted behavior and using distraction to refocus the loved one's attention to something more acceptable.
OK, this doesn't really tell you enough, does it? But next week's blog will be about preventing and avoiding unwelcome sexual advances.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, February 14, 2020

Love & Sex, Pt. 2: Loving Touch

Happy Valentine's Day. Give yourself and someone else a hug for us today!

Last week's blog was about love and dementia. This week's blog continues that discussion. Years ago, we had a "touch but don't look" culture, where it wasn't unusual for a whole household to sleep in a single bed but one's body was hidden from neck to toes under layers of clothing. Now, our American culture has changed to "look but don't touch," where people's bodies are more exposed but there is much less touching. Even so, we humans are herd animals. That is, we thrive in groups and decline when isolated. We all need to be touched.

As we age, we tend to experience touching less and less. If you were raised as I was, in a non- demonstrative family, touching can become almost non-existent unless you make a conscious effort to change that. This is also the case if you live alone. However, you can change this. You CAN make that conscious effort and start touching more.

In a care facility, loving touch can be rare unless the person has regular visitors, family or otherwise, and even then, it depends it depends on if the relationship between the visitor and resident has been a touching one or not. Residents do get quite a bit of custodial touch when they are helped to dress, eat, bathe, etc. Don't discount this. It is better than none, but it doesn't have the power that loving touching does.

Sadly, it can even become rare in a home situation as well. A care partner may get so enmeshed and burdened with caregiving that they neglect to take time for gentle touching and hugging--or they may just not be a toucher. If this last fits you, it does not mean that you don't love the person in your care. It simply means that once you know the value of touching, you will need to be more conscious about doing it since it isn't second nature for you. The upside of this is that you get equal value from that touching!

Recent research supports the value of touching. Studies have shown that:
  • Hugging induces a chemical that increases feelings of connectedness, trust and security and reduces stress. Physically, it lowers blood pressure. Wow! Hugging is strong medicine! But there's more. Hugging that is front to front puts gentle pressure on the sternum which activates a process that strengthens the immune system. We often hug from the side, but make an effort to be more frontal...it is just healthier!
  • Even holding hands is healthy and the emotionally closer your hand-holder is to you, the more help you get. Holding hands with a stranger will lower a person's anxiety level. Holding hands with a spouse--or care partner--is even better. They have MRI brain images to prove this.
  • Cuddling or snuggling may even improve communication. Its non-verbal messages are powerful ways to let a loved one know you care.
  • Touch improves cooperation. People who are touched briefly on the arm or shoulder are more likely to comply with requests such as volunteering for charitable activities. A study in a home for the elderly showed that when service staff touched the patients while verbally encouraging them to eat, these patients consumed more calories and protein for up to five days after the touch. (When I read this, I immediately wondered if those poor patients didn't get touched again for those five days! Did you? Research can be oh, so helpful but it can also be cruel at times such as these.)
  • People recover more quickly from social rejection when they are holding a teddy bear on their lap. Also, loved one who are given a stuffed toy or a doll tend to express fewer needy symptoms and be less clingy.
And so please wrap your arms around yourself and give yourself a hug! Then go give your loved one a hug and finally, go find someone else to hug as well.

Reference

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, February 7, 2020

Love & Sex, Pt. 1

This is the first in a series about how dementia changes love and its related sexual issues.

"I don't like my dementia dad very much. Yes, I still love him, but I don't like him. I feel so guilty!)

"Our relationship has changed from a passionate love affair to friendly roommates."

"We were partners, friends and lovers. Now he is a stranger and most of the time, not a very pleasant one."

Yes, sadly, dementia changes our loved ones. It can take away their empathy, increases their negativity and makes them more difficult to love. It can change them from an independent, enjoyable and helpful person to someone who is anxious or even angry, insecure and needy.

It changes the care partners too. If you aren't diligent about your own care, the stress of caregiving can make you not only physically sick, but irritable, impatient and depressed as well. Since dementia turns our loved ones into emotional mirrors, they will express these same feelings of irritability, impatience and depression along with their own indifference, negativity, dependence, insecurity and neediness--and more. You see where this can go...and what it can do to a relationship once built on love. The love may still be there, but it is so overrun by less comfortable feelings that all that may be left is guilt at not feeling what you think you should!

The answer is to start with accepting that it is the disease, not the person that you don't like, that makes you angry, that hurts you, that wears you out with neediness, that.... It is the disease. The more you learn about how the disease changes your loved one's brain, the easier it will be to see that this is so.

If your loved had a broken leg, would you be upset that he couldn't walk. Of course, but you'd be upset about the leg and the extra work it causes you, not his unwillingness to walk. That's the way you have to look at dementia, if you want peace of mind.

Dana expressed it this way: "Once I accepted what dementia had done to my husband's emotions, it became important--and easier--to show care, compassion and reassurance that I would be there for him. His anxiety levels dropped and he is less afraid when I'm not there at every moment."

Equally important is taking care of yourself. Again, this isn't easy, but it is every bit as important as any other caregiving task that you have. The payoff is that when you are rested and healthy, you will be more positive and that's what your loved one will mirror instead of all of those negative feelings that an overwhelmed and overburdened care partner expresses.

Finally, let go of the guilt that you didn't do it right or the worry that you won't do it right and practice compassion. Not only compassion for your loved one, but also for yourself--especially for yourself in fact. Compassion is accepting and giving. These positive feelings give back to you in well-being and health. Compassion, accepting and giving might also considered other words for love.

Next week's blog is about the importance of loving touch.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, January 31, 2020

Care Partners Pt. 4: Resources

This month's blogs have been about care partnering. We've made a point of saying that this is a daunting job and you will likely need help before it is done. And so how do you go about getting that. Well, last week's blog made some general suggestions but this week is more specific by highlighting just a a few of the many resources noted in our books. For a longer list, check out our books.

National Association of Area Agencies on Aging: Because this group has local offices in most communities and therefore can provide you with lists of local resources, it is at the top of this list and the one you should check out even if you don't check out any of the others. your list of resources. 202.872.8888 or email info@n4a.org.

LBDA.org: This is the most thorough website focuses specifically on Lewy body dementia on the internet. You can find information about LBD, support groups and a medical glossary here as well as a myriad of other things.

Family Caregiver Alliance:  This is Jim's favorite, after the LBDA.org and our own, of course. It is one of the best caregiver sources on the internet. Find databases for a multitude of local resources by state. 800.445.8106.

Assist Guide Information Services.  Excellent site with checklists, databases and information on the disease, drugs, home care and safety, legal and financial issues, care placement and other caregiver support.

AARP Health Tools. Especially helpful with medications, these tools not only include drug symptoms and interaction checkers and other drug related tools, but other information as well such as cost caculators and Medicare information.

USA.gov for Caregivers Resources. Directory to state and federal websites and agencies offering services to caregivers. One listed website is benefits.gov, useful for researching government help. 844.USA.GOV1.

Hilarity for Charity. An organization that raises money for grants for dementia caregiver assistance. Use their online email contact form to apply for a grant for financial help for in-home caregiver costs.

Rebuilding Together. Home caregiving often requires remodeling bathrooms. This nonprofit may be able to help you with low or no cost home modifications. 120 local USA offices. 800.473.4229

The National Academy of Elder Law Attorneys, Inc. (NAELA) Click on “Find a Lawyer” for elder care lawyers by city/state, zip or name. Care partners highly recommend that you use an elder lawyer to prepare your legal papers. You should be able to use this site to find one in your area.

Guide to Long Term Care for Veterans. Information about home, community based and residential long term care options. If your loved one is a veteran, don't miss out on benefits by neglecting to contact the VA.

National Long-Term Ombudsman Resource Center.This organization not helps you find an appropriate local long term care facility. Then it provides advocacy if you have a dispute with them.

As promised, this is only a short list of the resources available to care partners. You can find more in our books.

Friday, January 24, 2020

Care Partners Pt 3: Burden and Help

Last week's blog was about the challenges of care partnering. While there can be blessings which last week's blog also discussed, the challenges can be detrimental to good care and as well as being actually deadly. Even so, if you are like most care partners, you want above all else to provide the best care possible for your loved ones. Thus, you need to stop and look for ways to do this and maintain your own well-being so that you can keep on doing that best job you can.

Care partners often feel that that they don't have the time or the energy or the know-how to do it all or do it right. No wonder they are usually stressed and overburdened! That doesn't have to be. Better information can actually change the workload, but even more importantly, it can change a person's expectations. These two together can change a person's stress level. And when a care partner's stress level is lower, so does their loved one's along with their stress-related behaviors, which decreases the workload.

Well, that's just great, you say. But I know what needs to be done and I know that it takes more time, energy and skill that I often have.

Well, first, let's look at that workload. What doesn't really have to be done? Start prioritizing and do only those things that need doing now. For example, dishes don't need to be done after every meal--or even every day. But there comes a time when you likely will need help. Dementia is an expensive disease. One reason is that extra help often becomes a necessity, not a luxury. If, even after you've done everything you can to cut down your workload, you are still feeling overburdened and stressing out, the time has come to find help.

Admitting your loved one to a care facility is something that most care partners put off until they have no other option. You might want to reconsider for a couple of reasons.
  • The earlier a person enters a care facility, the more likely they will be able to become a part of the community and not simply someone sitting alone in their room.
  • When someone else provides the physical care that wears you out and keeps you up at night, you can return to being family instead of caregiver. Nancy, a very reluctant care partner who finally made the move reported, "I so wish I'd done this sooner. We've gone back to being husband and wife and I love it." No longer overworked and under-rested, Nancy was able to provide her husband better emotional support, something that only she could do.
If your loved one is still at home and hiring help isn't in the budget, review the budget and see if you can fit it in after all. It is that important. The help doesn't have to be with your loved one to be very helpful. Someone to do household or yard chores can free you up to do the caregiving that you may prefer to do personally.
  • Call your local Area Agency on Aging and ask about organizations that can help with the cost or even provide some care. 
  • Talk to your church leaders and secular organizations like the Kiwanis and the Elks.
  • If your loved one is a vet, contact the VA. Such organizations often have groups that visit and often provide non-nurse-related help such as lawn mowing or vacuuming.
  • Finally, let go of your pride and ask family members, friends and neighbors to help. Family might be able to share expenses, or an adult child might be willing to spend nights with your loved one so that you could get needed rest. Friends and neighbors can spend an hour or so with your loved one to give your a break, provide meals or do house-or-yard work.
Once you have more help, you will find that you are doing a better job at those things that only you can do: providing your loved one's emotional support, managing the many aspects of care--doctor's visits, physical therapy, and so on.

Make sure you include some personal time. This is not a luxury. It is what refreshes you and keep you going. It should include not only some time to go to lunch with friends or yes! a support group, but also some quiet time at home for something like reading or a hobby. And don't forget your two-minute breathing breaks. Interrupting a stressful moment for one of these can cut down on a lot of friction!

Next week will be more about where you can get help.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, January 17, 2020

Care Partner Pt 2: Challenges and Blessings

Last week's blog started the year out with a discussion about care partnering and what it involves. This week's blog continues that discussion with a focus on challenges and blessings.

As shown last week, the job itself can involve many aspects, each of which can be challenging physically, mentally and/or emotionally. But other challenges that make a care partner's already difficult job even more difficult include elevated sense of burden and reactions due to changes in their relationship with their loved one that result in stress-related:
  • Depression, due to feelings of loss, ineffectiveness, frustration, tiredness, etc.
  • Higher risk of heart disease and headaches, due to increased fight and flight hormones.
  • Digestive problems, due to stress induced decrease in digestive functioning.
  • Disturbed sleep, due to their loved one's interruptive sleep behaviors.
It's no surprise to care partners to read that their job is challenging. They already know this from personal experience. However, there is also scientific proof. We talk a lot about using biomarkers to help diagnose our loved one's diseases, but they can also show evidence of the challenges that care partners face. Biological marker abnormalities among caregivers include:
  • Increased cortisol secretion, a stress-related hormone.
  • Abnormal glucose regulation, caused by hormones that add energy for a short term flight/fight reflex but tax a body's insulin production when stress is chronic.
  • Inflammation, a normal response to foreign bodies, that becomes harmful when stress is chronic.
  • Weakened immune system, when a normal decreased immune response is extended by chronic stress.
Even so, care partners find it difficult to seek out the help they need due to being:
  • Too overwhelmed. Seeking help may seem like just one more job in an already too full workload.
  • Too depressed. Depression can take away a person's ability to initiate...or in this Increased stress reactions associated with altered relationship dynamics, elevated sense of burden and depression
  • Too frustrated. Frustration is a negative emotion that motivates action but that action is seldom positive or helpful. More likely it instigates anger which only makes the situation worse.
  • Too isolated. It is essential to have open discussions to maintain well-being but dementia care can be quite isolating, as friends fall away and the job becomes to demanding to allow outside interests.
However, dementia care partnering isn't all negative. Care partners can experience a variety of positive feelings and emotions. Many care partners say that even though the job is difficult, it can also be rewarding. Perceived benefits associated with caregiving include:
  • The opportunity to give back. Giving is a positive feeling that always helps.
  • Improved relationships. As care partner and loved one learn to work closely together, a new and sometimes, better relationship can appear. This relationship will change as the disease degenerates however.
  • Feeling good about the quality of care. Most care partners know that they can provide better, more individualized, care for their loved one than a care facility can.
  • Serving as a role model for others. This is most likely to happen in a support group and is one of its important values.
  • Increased self-esteem, a normal result of feeling useful and needed.
  • An enhanced sense of purpose. Care partnering is a demanding job and expending the effort to do it well feels good...as long as it doesn't get so difficult that it becomes burdensome.
  • Feelings of pleasure and satisfaction. These can vary greatly, from the pleasure of a job well done to seeing the contentment of one's loved one to being more appreciated of personal time when it occurs.
A good share of the information for this blog came from Dr. James Galvin's presentation at the 2019 International Dementia with Lewy Bodies Conference.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Friday, January 10, 2020

Phrase of the Month: Care Partner

Over the last year we've started using certain words and phrases more and more. One of these is "dementia care partner" vs. "dementia caregiver."

We identify a dementia caregiver as anyone who provides care in some way for a person living with dementia. A dementia care partner is usually someone who lives with the person and is responsible for their whole care. That is they may not provide the care, but they are responsible for making sure it is provided.

While a caregiver may provide only physical care, a care partner's job is much more diverse. The responsibilities of a care partner, also called a family caregiver, include many challenges but also with many blessings. The job can involve any of the following and more:
  • The physical, hands-on care of their love one. Helping with dressing, toileting, bathing, eating and all those many daily living activities.
  • Care management. Arranging for care and services such as doctor's appointments, lab tests, physical and occupational therapy related to LBD and other medical conditions.
  • Assessment of a loved one's condition. Deciding when to call a doctor or ask for other help or guidance.
  • Social manager and companion, making sure that their loved one continues to have social contact in ways that are less anxiety producing.
  • Legal manager. Making sure all the necessary legal paperwork is in place so that as the disease progresses, transitions or responsibility will be smooth.
  • Financial manager. Being responsible for the management of regular income and expenses.
  • Housekeeper, cook and dietitian. Making sure the home is safe and clutter-free and the food is not only attractive but brain supportive.
Along with all of these jobs, the care partner also usually has a previous relationship with their loved one: spouse, child, or other relative. Jim's was that of spouse. My loved one and I were sisters. My daughter cares for her mother-in-law.

Each of these relationships started out different and involved a variety of challenges as the disease made the roles change. These transitions can be difficult, as responsibilities once held by the loved one pass by necessity to the care partner--not always willingly on the loved one's part!--and as activities once enjoyed by the two become less enjoyable or even impossible. Next week's blogs will explore some of these challenges and identify some blessings.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.