When Nothing Seems to Work, Part 3

Two weeks ago, the blog was about how the dementia-riddled brain causes a person to:

• be stuck with the first, often negative view of an event
• have very little empathy

Today's blog is about how emotions drive behaviors. Dementia doesn't damage emotions like it does thinking and memory. Emotions can remain long after the person living with dementia (PlwD) has forgotten what caused them in the first place. And then they get attached to a future event.

Many dementia-related behaviors are driven by a these residual negative emotions. If you can identify the emotion and speak to it instead of your loved one's words or actions, you will have much better chance of success. Many of these emotions are going to be about things like loss, fear of abandonment and lack of respect.

Being calm and patient is a good first step, but that alone may not be enough. You need to really listen to what your loved one is feeling, not just saying. Look deeper than the anger or frustration. These are secondary emotions. Look for the feeling behind them. Helplessness? Fear? Loss? Often it is loss. For example, when the PwlD is railing about a lost driver's license, It might really be a loss of independence, of adulthood, of manhood even.

When the doctor reported John's dementia to the DMV and he lost his license, he was very angry. "Why did she that do that?" he asked. Mary told him, "She's required to." That kept John from being quite so mad at his doctor, but he was still fuming. He complained "I don't have any say over my life at all any more." Speaking to his sense of loss, Mary said, "That Lewy, taking one more thing away from you. It just isn't fair" and even let herself sound a little angry. Mary was doing two things here. She was validating John's feelings, showing "I'm on your side" support, and she was giving him a target for his anger besides her or the doctor--"that Lewy." It did help. John calmed down and said, "Yes, it is, it's not for sissies," a phase they used often about the disease.

You may have been warned not to show anger for fear of increasing your loved one's angry behaviors. However, a mild show of anger can work if you are clearly expressing it in support of your loved one, not at them or at the situation they have caused. This makes them feel heard and supported, not discounted or controlled. Just make sure your anger is less intense then your loved one's. You don't want them to escalate their anger to match yours! Also be sure to follow up such expressions with more soothing expressions of support. "I love you just the way you are," Mary might tell John with a loving pat on the arm or even a hug.

This same technique can work with any other feeling of loss. The goal is to validate the feeling so that the PlwD can calm down. Without the negative feelings reigning, a person can think more clearly. This is true for anyone, including a PlwD. Mary may have to play out the above scene several times if John doesn't remember and again, wants to drive.

Of course, this won't work for everyone. For example, some PlwD don't want to own the disease and so it is difficult to make it the scapegoat. And that's what the next blog is about.

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
Riding A Roller Coaster with 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.

Summer Schedule

This week we are Conference bound and so we did the blog early in the week. Do check it out. Even if you won't be at the conference, you can download the information about our poster.

Next week's blog will be the third in our series on When Nothing Works. Then there will be another break for the 4th of July. Then on July 12th, the final blog in that series will appear. We aren't traveling this summer, but we are experiencing our first summer of over 110 degree temperatures and the lethargy that goes with that. Therefore, we will keep to our summer every other week blog schedule.

We hope you have a wonderful summer!

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
Riding A Roller Coaster with 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.

The International Lewy Body Dementia Conference

This week's blog is early because we wanted to get this information out to you in time for you to consider going. We will be there!

This conference, sponsored by the Cleveland Clinic and the LBDA, is a forum for research scientists, clinicians, and other health care professionals to share the latest information from each of their disciplines. In addition to highlighting the progress made in the various areas of research, this conference will provide an opportunity for patients and caregivers to be exposed to new knowledge and to interact with researchers, clinicians and other patients and caregivers.

Individuals who have been diagnosed with Lewy Body Dementia, their family members and their advocates are invited to attend.

For more information about the conference, you can click on the link below to download the Conference Brochure. It will open in a separate window.

Conference Brochure

To visit the conference website, you can click on the link below which will open in a separate browser window.

International Lewy Body Dementia Conference

Not only will we be attending, we are joining Rosemary Dawson in presenting a poster on Tuesday, June 25th.

Poster: Non-drug Approaches for Care Partners to Use When a Loved One Living with LBD has Behavioral Changes.

Presenters: Rosemary Dawson, Ed.D.; Helen Whitworth, MS, BSN; and Jim Whitworth, LBDA co-founder

You can click on the buttons below to get copies of the whole poster and of a slide presentation that Rosemary made from the poster information. Both will open in separate windows. Warning: These two files are very large and should not be opened on a cellular devise. The poster will appear very small on your browser; zoom in to see it better. You will need a PowerPoint program on your computer to view the slides.

Poster           Individual Slides             PowerPoint Presentation

To learn more about us and the presentation, you can also download the following documents:

Presenter Bios

Presentation Abstract

Resource material

Finally we have a special invitation to all of you:

Informal Meeting at the International Lewy Body Dementia Conference

If you are a conference attendee who is living with LBD, a LBD care partner, or someone who supports both, do plan to attend this informal meeting. It will give many of us who have met online a chance to meet person and those who have met already met a chance to reconnect.

WHEN: Monday, June 24th directly after the last session at 4:30 pm until the all-conference reception that begins at 6:00 pm.


WHERE: In the Patient and Care Partner conference room


WHO SHOULD ATTEND: People living with LBD, current and former LBD Care Partners, and people who support them (support group moderators and facilitators, Lewy Buddies, etc.). Spouses, family members, and others who are accompanying the above are also encouraged to attend.


WHAT TO EXPECT: This is an opportunity to mingle and network with others. We will also share some resources and information in an informal way.


RSVP: Not required; just show up. If you want to let us know that you will be there, email LewyBuddyRo@gmail.com.


QUESTIONS: Email LewyBuddyRo@gmail.com
We are looking forward to meeting many of you at this 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
Riding A Roller Coaster with 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.

When Nothing Seems to Work, Part 2

Last week started a series on dealing with difficult behaviors. That blog noted that the first line of defense has to be the care partner's own self care. Only then can you expect to a) respond appropriately to your loved ones unwanted behaviors and b) avoid having your loved one react to your underlying and stressful feelings instead of what you are doing and saying overtly.

This week's blog is about how while dementia changes many things for both the person living with the disease and their care partner, not everything changes--or it only partly changes.

A person living with LBD (PlwLBD) is usually just a more difficult version of the person they were before. Likewise, the relationship you had with your loved one will likely be similar to what you had before, only there will probably be more negatives and these will be more extreme. That's because the dementia-riddled brain:

• is one track, going first with the most demanding emotions, which will usually be negative.
• processes in an all or nothing mode, so that any negativity at all will likely be exhibited as extreme.

We know a young couple who have a very stormy relationship. It cycles from angry arguments to passionate make-ups and back again. This works for them--now. Both of them would tell you that they are married to the love of their lives. "It keeps our relationship interesting and fresh," they say. Even so, I dread to think how that couple would fare if Lewy entered their lives!

Another couple we know are just as committed to their spouses. However, their relationship is much less bumpy and exciting. "We enjoy each other. We have our differences but we can usually talk it out," they say. This couple would probably be able to deal with Lewy much better.

Sadly, dementia multiplies the negatives in a relationship and often ignores the positives. It's the way the brain works. Negatives are given crisis status and therefore are the first to be noticed. That's fine as long as a person can think abstractly. Then, we can look past the negatives to the positives and see that they outweigh the bad. "A person with the ability to think abstractly might say, "I don't like the way my life has changed, but I still have many things to enjoy." The dementia-damaged brain can't do that. It stops with the first information it receives -- "I don't like the way my life has changed."

Even with help, the PlwLBD isn't going to be budged. This is their truth, their reality. Loving, patient explanations aren't going to change that. Angry, frustrated responses will only fix it firmer in place. All your efforts will do is cause your loved one to believe that you don't care and aren't even trying to see it their way--the only way.

Successful dementia care requires huge amounts of empathy in care partners. With it you can enter into a PlwLBD's reality and have a chance of useful communication. On the other hand, dementia takes away the PlwLBD's ability to empathize and so this isn't a two-way street. Don't expect a PlwLBD to understand your frustration, your fears, your worries or your hurt feelings. Instead, they will pick up the emotions you broadcast and mirror them back at you as their own anger and frustration--with no recognition of your feelings and no need to help you feel better.

Back to the couples mentioned earlier, the first couple dealt with their differences by fighting about them, with very little empathy for each other. The second couple made an effort to empathize and come to a mutually acceptable solution. If Lewy hits, empathy is going to go a lot sooner for the first couple than it will for the second couple. Again, what we were is what we get with Lewy, only worse!

The moral of this blog might be "Work to have positive, empathetic relationships while you are healthy because that becomes even more important--and more difficult--when illness hits! Of course, most of those who read this will be beyond the ability to prepare...you are already in the midst of dealing with the damage dementia causes! But all is not lost. Although the PlwLBD is beyond change, the dementia care partner still can. You can focus on being positive instead of broadcasting those volatile negative emotions. You can be empathetic and thus able to respond to your loved one's reality rather than your own.

Or you can if you've taken the first step and are making these efforts with a rested mind and body! But even then, nothing works all the time. It may not be because you "didn't do it right" but just because Lewy is being perverse and difficult. You just have step away, and then try something else...ask for help, ask for ideas.

New week, more about dealing the difficult behaviors and staying sane.

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
Riding A Roller Coaster with 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.

No RVing this Summer: The Cleveland International Lewy Body Dementia Conference Instead.

The second blog on the series of When Nothing Works will be here next week but this week, we wanted to make an announcement about our summer plans. We wanted our readers to know what was happening so that perhaps you could join us in Las Vegas later this month.

This year we are staying in Arizona for most of the summer. Jim has decided that the time has come for us to quit RVing. We both have issues that make this a smart, if unwelcome choice. Although we will miss RVing, we know that this is like the choice to stop driving altogether. It needs to be done before the minor problems cause bigger ones...and it works best when it is the driver who chooses to stop.

But we are going to take a couple of trips in our car. The first will be to Las Vegas, where we will be joining many other LBD caregivers, advocates and professionals at the Cleveland International Lewy Body Dementia Conference. On Tuesday, June 25, we will be presenting a poster: Non-drug Approaches for Care Partners to Use When a Loved One Living with LBD has Behavioral Changes. Rosemary Dawson ED.D., who moderates the Caring Spouses and Life After Lewy groups and is very active with the LBDA, will be with us. In fact, she is the one who designed the poster with our input.

Our poster shows a a variety of non-drug methods for dealing with behaviors, most of them also included in our book, Responsive Dementia Care: Fewer Behaviors Fewer Drugs. If you come to the conference (and we hope you can!) be sure to come by and talk with us!

The conference is three days long with lots of LBD related subjects. It is divided into a Scientific Track and a Patient and Caregiver Track. We've attended both kinds and believe me, this is a blessing for those of us who aren't up on all the scientific language. However, we hope that if there is something we especially want to learn that isn't being presented in the caregiver track, we can cross over.

We are looking forward to learning more about biomarkers and imaging and much more to pass on to all of you.  Here is the brochure. Check it out and plan to come join us if you can. We'd love to meet you there!

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
Riding A Roller Coaster with 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.

When Nothing Seems to Work, Part 1

As educated care partners, we know a lot of techniques to use with our loved ones: be patient, be accepting, be empathetic, remember it's Lewy talking, go with the flow, keep my sense of humor, and on and on. But sometimes, none of it works. What then?

First, are you starting in the right place? Have you prioritized your self care? As educated care partners, we all know how important that is. But are you letting the urgencies of your loved one's care override your own seemingly less urgent needs? If you are, then no wonder nothing is working!

Before you can expect to be successful in managing your loved one's difficult behaviors, you have to be able to manage your own responses to those behaviors. Even when you know the correct response, you won't be able to do it if you are functioning in crisis mode. And that's where a care partner who has neglected their own needs can easily be. Overworked, tired, frustrated and hurting from back aches or more. This is the norm for many care partners.

"But I barely have time and energy to take care of my loved one. How can I be expected to spend more time and energy on self care?" they say. Like many of the things involved in dementia care, the answer to this question is that it may not be easy but it IS imperative. You, rested and alert, are your most important caregiving tool. You, overburdened and frustrated, are your most damaging caregiving tool. It is that simple! That's because:

• your attitude is all important. When you feel harried and overburdened, it is difficult to be patient and easy to be irritable, difficult to respond positively and easy to react negatively. You are less likely to get the result you want--which causes you more stress, more frustration and more burden.
  
• your loved one will pick up your feelings, personalize them and mirror them back at you, often magnified. Your stress becomes their anxiety. Your frustration with the situation becomes their anger at you.

Taking care of yourself involves time away from your loved one, time away from caregiving, time for yourself, doing things you enjoy. This is not selfish, frivolous or uncaring. Nor is it optional, any more than good wound care is optional. That is, you don't have to do it but if you don't, you pay the consequences. This blog isn't about how you can do this, but how you must, even if you have a limited budget. There are many ways and each care partner must choose which ones work best in their situation.

For ideas, see the many previous blogs on this site about self-care like this one, as well as many other online articles. Be sure to choose some in-the-moment practices, such as deep breathing. These shorter "quick fixes" help you to deal with immediate stress. Also choose some longer "me times", such as lunch with a friend or even a few days away. These longer respites allow you to relax, regroup and regain your focus. Revived, you can return alert and energized, ready to deal with issues that once seemed overpowering. You need both the quick fixes and the longer respites. Each plays a part in helping you deal successfully with the difficult behaviors that dementia presents to a care partner.

With ongoing self care, you can be a more alert, rested, relaxed, patient, positive, accepting, empathetic and responsive care partner. (Never perfect, mind you, but not the easily frustrated and irritated person we tend to become when we feel overburdened.) Only then can you hope to deal successfully with your loved one's difficult behaviors. Until then, you are working at cross purposes, trying to fix a damaged system with weak and failing tools--tools that actually foster worse behaviors, not better ones.

Next week, more about dealing with difficult behaviors, focusing on some of the things that can't be changed but might be worked around.

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 Riding A Roller Coaster with 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.

Thera-Fibs 2: Not Just One Kind

Last week's blog was an introduction to therapeutic fibbing (thera-fibbing), a technique useful when a loved one's thinking errors make reasoning impossible. If you haven't read it, go back and do it now. This week's blog is has more about the multiple kinds of "thera-fibs."
Remember Katie's resistance to lying to her husband? She's not alone.

I see the value of thera-fibs, but when I try to use one, I feel awful. Usually, it isn't successful. -- Katie

Katie's discomfort is too obvious and that is what Fred reacts to, not what she says. One way for Katie to overcome this resistance is to think of thera-fibbing as improv acting. That is she would respond from Fred's reality, not her own. If Katie can view herself as play-acting in Fred's "drama," and not lying, she will probably be able to use thera-fibs with less discomfort. For more about using improv with dementia, start with our 10/24/17 blog.

It used to be that I could tell Fred that his little men weren't real and he'd believe me. But now I can't. What he sees is real to him and that's that. -- Katie

Going along. Improv works well for going along with Fred's hallucination. Hallucinations are difficult for LBD care partners because this symptom can show up prior before thinking errors. Katie had become used offering her own reality to Fred and having it accepted. And then it wasn't. His dementia had progressed and taken away his ability to accept any view but his own. As it often does, it took Katie a while to catch on, But now that she has, she can just go along, nod, and even ask a question or two to show interest. She can also enter his reality and use play-acting to move his "drama" to something more comfortable for him.

Avoiding or shading the truth. Improv can work with this too. The main thing to remember here is that emotions are more important than words. The goal is always to decrease the stressful ones and increase the positive emotions. For example, if Fred is resisting going for his usual walk because the neighbor's dog triggers fears from his past, Katie can reassure him that she will protect him. She might even carry a stick "for chasing the dog off." She doesn't try to tell him that the dog is not dangerous. She simply speaks to the fears.

A white lie. Sometimes lying seems the only answer. Fred's mother died years ago, but every once in a while he asks about her or wants to telephone her. Katie has learned not to tell him his mother is gone because this causes Fred to grieve her loss all over again. Instead, she says she is on a trip, or doing something where she can't phone. "Wait a day or so to call," she tells him. And then she suggests something that they can do, like calling their son. This distracts Fred and he forgets about his first concern. Katie has also learned to avoid making promises she can't keep. For example, she didn't tell Fred his mom would be back in a day or so. He likely wouldn't remember, but if he did, she'd have to come up with another lie!

Tricks. These are setups so that the person living with dementia gets something they resist but need, such as a nap, medicine or a doctor's visit. The trick might be fairly simple, such as putting medicine in applesauce so that Fred will eat it. Or it can be more complicated like combining an ice-cream run with an "impromptu" (but actually well-planned) stop-off at the doctor's office first.

Withholding the truth. Katie and Fred were used to sharing everything. When his mother died, they grieved together. When their son won a trip to Hawaii, they celebrated together. Those days are over. Now, issues that aren't in Fred's "here and now" simply make him anxious. Katie has learned to edit them from her conversations with him. She didn't tell him when a friend passed away or when another one had a new grandchild.

Like the care Katie and Fred once took to be truthful with each other, the sharing of such sorrows and celebrations was a valuable part of their relationship. Thus, these omissions are painful to Katie. She grieves their loss even though she knows that using thera-fibbing in its various forms makes Fred's life, and therefore hers, happier and less stressful.

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
Riding A Roller Coaster with 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.