Magic Tools 2: Conscious Choice

Last week we started this series about behavior management with a discussion about checking on a couple of issues that often lead to difficult behavior, your loved one's health and their environment. If you've found no problems there but the behavior is continuing, it is time to look at how you interact with your loved one.

Dementia changes the rules. It changes how your loved one thinks and what they do. For them, what once was simple curiosity can become a wild accusation. What once might have been a pleasant fancy, a wishful thought or an uneventful happening can morph into a totally believed delusion. Unless you change your own behavior, you may find that all too often, once calm discussions become raging arguments.

Frank and I have had a good marriage where we could usually talk out our differences. But then he was diagnosed with LBD a year ago. We were doing all right until Covid came along and changed so many of our routines. Frank hates change and can’t understand why we must stay in the car when we go out for ice cream or why everyone we see is wearing masks. I think this all frightens him. His delusions have gotten worse and he’s angry more too. I’ve tried explaining; it just makes him impatient. I try not to respond to his anger with my own but I don’t always succeed. And when I try to defend myself, that really makes him angry! I’m at my wit’s end. Mary

Like Frank and Mary, most of you have had successful relationships prior to LBD, as couples, parent and child, siblings or friends. You had developed tried and true ways to relate comfortably. When dementia appears, those old ways that once worked so well often fail. For example, Frank and Mary’s ability to talk out their differences depended on being able to recognize and respect each person’s point of view and then make compromises. This requires complex thinking, something LBD has taken from Frank.

New Tools for New Rules. Since dementia changes the rules, Mary needs to learn what has changed and how to deal with the results of those changes. Our book, Responsive Dementia Care explains the thinking skills LBD takes away and those it leaves. Briefly, it takes away the ability to multi-task, generalize, empathize or prioritize. Without these skills,

• Frank can only react. He can no longer choose between two ideas, change his mind or make judgments.
• Frank’s brain now accepts the first information about a situation that it receives as an unchangeable fact, his TRUTH.
• He cannot compute concepts like distance and time. He must function totally in the here and now.
• Everything is either/or: black or white, is or isn’t, yes or no. There are no maybes, ifs or laters, no distances like near or far, no graduations like a little or a lot. Frank is either very hungry not hungry at all, extremely angry or not angry at all, etc.

The Magic of Conscious Choice. Making a conscious choice to try a different way of responding to your loved one can be magic. Even though Frank can no longer make choices or initiate change, he can follow. Thus, when Mary changes her own behavior, Frank can follow her lead and yes, then he can change too!

Learning how the dementia-damaged brain functions is the first step in this process. Then she can use this information as a guide for choosing a response to Frank. When Mary makes these conscious, thought-out choices instead of reacting automatically, she is much more likely to be successful in leading Frank away from the circumstances driving his behavior.

Next week’s blog will be about emotions and the magic of empathy.

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.

The Magic of the Right Tools, Pt. 1

Jim monitors several online LBD caregiver support groups. Lately, he’s been reading a lot of entries from distraught care partners who are can’t understand why their old tried and true ways of interacting with their loved one no longer work.

When we talk about tools for managing a loved one’s apparently irrational behavior, we need to start with a couple of things that may not appear to have anything to do with the behavior that is showing up. We call these the checks: checking the health and environment. Our books about LBD (see below) all have chapters that address these issues. But briefly:

Health Checks: Dementia changes the rules. But somethings don’t change, especially concerning health. Your loved one still has the same health issues, except that now dealing with the dementia takes up a lot of the body’s reserves and so their health problems may get worse. Infections are also much more common. All of these can cause your loved one pain and distress.

• When a person has lost the ability to communicate, which can happen on with LBD, they will use behavior as communication.
• Even if they can communicate, they may not even be aware of a specific pain—they just feel bad and again, express their pain with behavior.

Before you consider any other reason for your loved one’s behaviors, check their health. Look for bruises, consider a urinary or other infection and check other health issues specific to your loved one. You might be surprised at how fixing one of these can change their behavior--like magic!

Environment Checks: Dementia changes so much that your loved one really needs the stability of an unchanged environment. Familiarity is a friend and change is the foe. In an environment where you loved one feels comfortable and safe, unwanted behavior decreases.

• Keep your home décor the same. Even holiday decorations can be an unwelcome change and should be used sparingly.
• Set up routines and do everything with your loved one the same as much as possible. Routines are magic for helping your loved one to feel in control of their ever-changing life. The more routines in their life, the safer they feel. And the safer they feel, the less behavior you can expect.

Then, if you’ve determined that to the best of your knowledge, the reason for the behavior isn’t health or environment related, it is probably due to YOUR behavior! Yes, yours! But the good news is that unlike your loved one, who can't make changes, YOU can change. You can learn new ways of relating with your loved one. New tools. With these, you can change your behavior and then, lead your loved one into changed behavior of their own.

Next week’s blog will discuss how dementia changes the brain and address why it is necessary to change your behavior if you want your loved one’s to change.

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.

Caring for the Caregiver During the Pandemic

This article, written by Michele Grigaitis- Reyes DNP, FNP-BC CNRN, FAAN, was borrowed from the Beacon,  a newsletter from Phoenix's Banner Health. We've attended the LBD caregiver support group Michele facilitates there and can attest that she is very familiar with LBD and all its challenges.

Now in addition to you being the primary caregiver to your loved one, your activities are restricted. Your loved one may be seeming to decline as time goes on. You both are likely at high risk for complications if contracting the virus and likely your families and friends are telling you to “wear a mask and stay home”. Something as simple as going to the grocery is fraught with decisions- do you go in the store? Do you take your loved one? You no longer have the ability to access some of those respite activities that were so helpful to you. Even visiting with your family is limited. An already stressful role is now exponentially increased. So, what can you do?
1. Eat a healthy diet. Both you and your loved one will benefit from maintaining a typical diet. On occasion If possible, order takeout from that restaurant you both like, or go for a drive and get lunch from a drive thru
2. Neither you nor your loved one will benefit from adding or increasing alcohol. Limit your intake to no more than you did prior to pandemic. The National Institute of Aging recommends no more than 1 glass daily for women or 2 for men.
3. Get plenty of sleep. Lots of research shows sleep is an under recognized and under-treated problem in caregivers. We know that “role overload” is associated with poor sleep quality, and currently the restrictions of the pandemic would lead most, if not all, caregivers to overload.

• Stick to a sleep schedule, even on weekends. 
• Be sure your exercise is 4-5 hours before bedtime. 
• Keep the bedroom cool, and turn of that television, tablet, or cell phone! The lights associated with these are known to affect sleep. 
• Be sure to have bright light exposure during the day.

4. Regular exercise is very important. Perhaps you played golf, or pickleball, or went to the Silver Sneakers program. Or, maybe you didn’t really exercise at all. Now may be a good time to start. There are exercises you can do at home. Perhaps you and your loved one could take a walk every morning. You can do simple exercises with items you have at home. You can find a step by step plan, with pictures, at www.nia.nih.gov and type in exercise.
5. Establishing a routine is very important, and now more so both for you and your loved one. Eating meals at the same time and your sleep schedule at the same time nightly. Try to do some exercise 3-5 times a week. Try to include an enjoyable activity each day or week.
6. Take breaks from watching, reading, or listening to the news. Hearing about the pandemic non-stop is stressful for everyone. If television watching must occur, try to find channels that have pleasant or “happy” stories.
7. Use, or learn, relaxation techniques. Yoga, Tai Chi, Mindfulness meditation, and other methods, can do wonders for your stress level. Even taking deep breaths for a minute or two can be helpful. There are a myriad of resources online.
8. Connect with others. Reach out to families and friends. Call on the phone, or perhaps chat with the neighbor over the fence.
9. Connect with support groups. Most groups are being held using some type of technology platform such as Zoom or Skype. These programs allow you to see each other. If you don’t have access to the technology, that’s not a problem either. Most have the option to call in on the telephone. (You can find a list of online LBD support groups at LBDA.org.)

Thank you, Michele. Next week’s blog will be the start of a series about managing dementia-related behaviors.

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.

Dealing with Dementia During the Pandemic

The pandemic has presented care partners with a whole new batch of concerns.

For those with loved ones in a care facility, the biggest concern is being unable to visit them or be with them during times of stress such as illness, surgery or final days. You may understand the reason for the restrictions. You may know that the staff is doing their best to fill in the gaps. But this doesn’t stop the worry and guilt about deserting a loved one who can’t even understand why. There is no easy or perfect answer to this. What answer there is will usually require working with the staff to find ways to connect, ways like window visits, Zoom visits, phone visits and perhaps even outdoor visits—from a social distance.

Then, once you’ve done all you can to maintain contact, you need to let go of the worry and guilt. Their job was to motivate you to act—and you’ve done that. Worry and guilt that hang around after their job is done are like rotten fish, obnoxious and unhealthy.

Those who are caring for their loved ones at home have questions like these:

• How do I take care of myself when normal respite options are limited or unavailable?
• How do I keep myself and my loved one safe?
• How do I help my loved one, who has a dementia-related fear of change, deal with all the necessary changes?
• How do I deal with the behavioral changes that often follow these changes?

There are no easy answers to any of these questions. And no single answer for any of them either. As with all dementia-related caregiving, there are many general answers but each must be customized to your own situation.

How do I take care of myself when normal respite options are limited or unavailable? As care partners, we tend to be much more focused on how to care for your loved ones and this question often gets asked last, if at all. But as care partner advocates, Jim and I know that it is often the first question you should address. If you don’t take of yourself, you won’t have the energy, stamina or even the health to you need for the demanding job of caring for your loved one. That’s why next week's blog will be about this very subject.

How do I keep myself and my loved one safe from the virus? Experts tell us that the safest thing to do is to stay home. Use online ordering, deliveries and curbside pickups instead of going shopping or eating out. You can find many more thorough guidelines online, but the basics are that when you do go out:

• Wear a mask—to protect others. Yes, I know, you are sure you aren’t contagious. However, since there may not be symptoms, you can’t be sure. Wear the mask!
• Practice social distancing—to protect yourself. Keep at least 6 feet apart from others not in your family group. That’s the distance the virus appears to be able to travel from one person to another.
• Get tested. Experts say the more people who get tested, the better they can watch and control the spread of the virus.

How do I help my loved one deal with the many changes? Since your loved one may not be able to accept wearing masks, etc., you may find that the best bet is simply to stay home, or to go out by yourself when you need to. Other changes will be difficult  explain too, like why no one comes to visit anymore. In fact, explanations are seldom helpful when reason isn’t an option. Try empathizing and sympathizing instead. If you find a way to agree, do so. And use patience, it is more soothing. Your friend here is time. As the new way of life becomes the norm, it will be less difficult for your loved one as well.

How do I deal with my loved one's increased dementia-related behaviors? Sadly, you may be able to use empathy, sympathy and patience to relieve the pressure some, but your loved one will likely still be confused, uncomfortable and probably scared. These negative feelings lead to an increase of those unwelcome dementia-related behaviors.

Our book, Responsive Dementia Care, has many very practical suggestions for dealing with difficult behaviors like obsession, delusions and irrational anger. Do consider reading it. Past blogs have also already addressed various aspects of this issue too.

A series of blogs reviewing our take on behavior management  will start two weeks from now. The LEAD Principles are a guide for helping you lead your loved one away from behavior-causing themes towards those that calm and comfort. Following blogs will be about using these principles to manage obsessions, delusions and angry accusations, the three Jim has found discussed most in recent care partner groups. However, the Principles can be used with a variety of other behaviors as well.

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.