LBD and Communication 2: Problems Not Related To Language

A couple of weeks ago, the blog was about language-related problems for the Lewy partner (the person with a Lewy body disorder). Communication is a huge issue for the Lewy partner. Without good verbal skills, they often find it difficult to be understood. This week is about some of the Lewy-related problems with communication that aren’t directly connected to language.

Thinking errors. Lewy causes a variety of thinking errors. Some result in delusions as described previous blogs. Others are less obvious.

I had to be careful how I told Quentin to do something. He’d go when I said, “Don’t go…” or sit when I said, “Don’t sit.” I guess he didn’t hear the negatives. –Beth

The subconscious brain, even when healthy, tends to ignore the negative prefix to a directive—hypnotists learn that “sit” and “don’t sit” often generate the same sitting response. It is the thinking part of our brain that recognizes the negative prefix. Quentin’s weakened ability to discriminate caused him to ignore the negative parts of Beth’s directives and do the opposite of what she wanted him to do.

Muscle rigidity. Quentin may actually hear what Beth wants but his body isn't complying.

Sometimes I'll tell Quentin to lean forward and stand up. Instead he pushes back and appears to resist me.   --Beth 
Lewy bodies can cause muscles to become rigid, so that when requested to do something, a Lewy partner appears to be resisting. This is unconscious. In fact, the more the person tries to follow directions, the more rigid the muscles will get. This is also temporary, so that once the pressure is off, Quentin may do the same thing easily, as though he had simply been being difficult or contrary.

Slow thought processing. As Lewy advances, thinking gets bogged down more and more. The Lewy partner processes everything very slowly—for others, that is. For them, their mind is racing a mile a minute trying to wade through everything that’s going on. It’s like your car when it is in mud and the motor is racing but you are hardly moving.

One evening, before we knew there was anything wrong with Bill, we took my dad out to dinner. I asked Bill if I could have his butter if he didn’t want it. He ignored me, and just sat there looking at his plate. I’m easygoing and so I didn’t push; I just went on eating and visiting with my dad. Five minutes later, Bill picked up his butter and put it on my plate. Years later, after his diagnosis, I remembered that and understood that he’d been processing my question that whole time. –Marla

Marla asked a compound question; one with more than a single idea to be processed: a) Did he want it and b) Could she have it. Such questions take more time to process because each component must be considered individually. Also, Marla’s conversation with her father may have been distracting, making processing the request harder. Bill would likely have had to start over if Marla had repeated her request or asked if he had heard her.

Attention deficit. A Lewy partner gradually gets to where they cannot focus on more than one two things at a time.

I get agitated when someone tries to talk to me when there is loud music in the background. I am also beginning to notice that I hate it when there’s more than one person with me in a conversation. And don’t go talking about too many things at once. –Joel

Joel’s brain can handle only a limited amount of input at any one time. It works hard to process that. Any more just doesn’t compute.

Light sensitivity. Lewy partners aren’t just sensitive to drugs. They are often also sensitive to light. They may frown or squint. They may also simply close their eyes and appear to be bored or asleep.

LBD is not necessarily the only thing causing communication problems. If you suspect that the Lewy partner has any of these or some other similar problem, have them checked.

Poor hearing can decrease and/or distort the sound of voices, making them difficult to understand. Even a healthy person can become isolated by deafness.

Poor vision can hide and/or distort visual information. Add LBD’s visual problems such as hallucinations and partial blindness can be very distracting.

Depression and apathy may make the effort to communicate seem too much to deal with.

Pain, infections and other illnesses will take priority and remove focus away from communication. They also add stress which increases any LBD symptoms already present.
Next week, the blog will discuss the non-verbal ways that a Lewy partner communicates. And the week after that, we will finally get down to how to use this knowledge to communicate better with our loved ones. Better communication goes a long ways towards decreasing stress and the accompanying Lewy symptoms.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

LBD and Stress 6: Stress Management Tools

Oops! Got ahead of myself and didn't post this last week. Rather than get too far ahead. I'm going back and publishing it this week. Next week, we'll go back to talking about communication. Like the information in the 2/7/14 blog, these tools also send calming directives to the brain. However, they usually take more training. For best effectiveness, choose one or more and make it a part of your weekly, if not daily, routine. Both caregiver and loved one can do these exercises, especially if you begin early in the journey.

The goal of these tools is to send oxygen to your brain and give you some space from what's going on in your head and in your world. Some add exercise which increases oxygen intake and provides a temporary mental escape as well. You will find that you can think more clearly and deal with issues more objectively after a session of any of these stress management tools.

Whole books are written about stress management tools. Colleges and community centers offer classes. Magazines and the internet have countless articles. Here are some suggestions to get you started. Choose one or two to learn more about. Then make them yours by using them regularly.

Muscle relaxation. Tensing and then relaxing muscles one set at a time from toes to head helps to consciously relax tense muscles. It releases the oxygen and energy held there and allows it to travel to places that need it more—like the brain. This is most easily done using an audio tape with guided muscle relaxations.

Self-guided relaxation: Think of a favorite restful place and put yourself there. Mine is sitting with my back against a shady tree near a babbling stream on a warm sunny day. Someone else might imagine they were lying on a beach near the ocean, or relaxing against a rock on top of a mountain with a gorgeous view. Combine this with some deep breathing for best effect. Guided recordings are also available for this type of relaxation.

Meditation: Sit in a comfortable position, close your eyes, breathe deeply and silently repeat a calming word or phrase like Oommm or Let it go. This prevents distracting thoughts while you relax the mind.

Yoga: Perform a series of postures and controlled breathing exercises to promote a more flexible body and a calm mind. While often strenuous, yoga can be adapted to fit the needs of a person with limited physical abilities.

Tai chi: Perform a series of slow graceful movements while practicing deep breathing. Tai chi is recommended for the elderly because the gentle movements are done standing instead of down on the floor.

With any of the above methods, also consider the following:
Be consistent. These tools need to be used regularly. If you don’t like one, try something else until you find one you enjoy. This makes it more likely that you will practice enough to make it a useful tool.
Avoid excitement. An exciting activity may be distracting, but remember that a LBD-compromised ANS may recognize excitement as danger, which will increase not decrease stress.
Practice, practice, practice. First response people like firemen or EMTs practice until their actions in a crisis are second nature. They don’t have to think about them, they just do what they’ve learned to do. Athletes do the same. They don’t become proficient swimmers or ball players or dancers without hours and hours of practice. They too need to train their muscles to act automatically. Practice your chosen stress management method every day so that when a crisis comes, you will be prepared. Practice so that you react with calming behaviors automatically.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

LBD and Communication 1: Language-Related Symptoms

The symptoms that affect communication are seldom obvious at first. They show up slowly, insidiously moving in and gradually changing the way a Lewy team communicates. At first, most problems occur during times of stress. Thus, when the Lewy partner (the person with the Lewy disorder) most needs to communicate well will be when it is hardest to do.

Language difficulties and weak facial muscles may make verbal communication frustrating and sometimes so exhausting that it isn’t worth the effort. The symptoms are not always obvious. Slowing thought processes, growing attention deficits and apathy may be seen as boredom. Light sensitivities show up as sleepiness. Misinterpretations and inappropriate responses due to failed thinking filters become identified as character defects.

Word recall difficulty. We all have this “it’s on the tip of my tongue” experience at times, but it can be one of the first symptoms of LBD. People often have a feeling they know the first letter of the word or even how many syllables it has, but the word just isn’t there.

We loved to go on picnics as a family. My dad and I still do, although we usually just stay home and eat in the backyard. Recently Dad suggested, “Let’s go on a, uh…Let’s take our food outside and eat on that table out there.” “Oh,” I said. “You want to go out back and eat on the picnic table?” Dad responded, “Yeah, let’s sit at the picnic table.” --Deborah

Deborah’s dad knew he didn’t have the right word and was able to talk around it to get his message across. Once he heard the word, he could use it with understanding.
Word substitution. Sometimes people use the wrong word and don’t even realize it.

We used to laugh when Quentin said green when he meant blue or things like that. Sometimes it wasn’t so funny. He once asked me for a chair and was mad when I brought him one. He’d wanted a step-stool. That was even before we knew he had MCI. –Beth

Quentin didn’t recognize he’d used the wrong word. Usually, the substituted word or phrase will be similar in some way to the intended word. It might:

• Have a similar function or meaning: chair vs. step-stool.
• Be in the same group: green vs. blue.
• Start with the same letter, or sound: computer vs. counter.
• Rhyme: washing fishes vs. washing dishes.

It may not have any apparent connection at all. The further into the LB journey a person is—or the more stressed—the more garbled the words are likely to be.

Weakened facial muscles. Even when Parkinson’s is not involved, Lewy tends to weaken the muscles around the face and throat. At first, it tends to attack and weaken those muscles that control the voice.

Quentin’s voice got so soft I could hardly hear him but when I asked him to speak up he’d tell me he was already shouting. –Beth

Quentin was making the effort to speak loudly; it just wasn’t coming out that way. Beth may also be hard of hearing--a common problem with aging caregivers. That makes Quentin's efforts even more ineffective.

As these symptoms add up, a person will become less able to communicate verbally and start communicating with their behavior—which we all do anyway, far more than we realize.

Next week, the blog will be about Lewy-related communication roadblocks other than language.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

LBD and Stress, Part 5: Changing the Body's Response

This blog is for the person with early LBD although the information works for anyone. The brain is a wonderful organ that can calm with soothing messages almost as easily as it excites with danger messages. The “almost” is because it does take a little more effort at first. Sending these calming messages isn’t as instinctual as the flight and fight reaction that leads to so much stress. However, with practice it can become second nature. The following ideas don’t take any training although they do improve with use. Practice them daily:

Use compassion. This is usually easier with others than it is with oneself. When you feel overwhelmed, ease back on your standards, slow down, and treat yourself gently.

A friend asked me to review her writing. I was glad to oblige. I’ve done a lot of proofreading in the past and I’ve always enjoyed doing it. But not this time. When there was more than a single comma in a sentence, I’d find myself going back and re-reading it over and over. I couldn’t seem to get past those commas! I called my friend and told her she’d have to find someone else. This was too stressful for me. –Jan

Jan is beginning to notice some early LBD symptoms. Commas separate thoughts or ideas. Several in a single sentence triggered her budding LBD and stopped her reading. Jan knows the importance of managing stress and so she didn’t punish herself by trying to continue to do something that had become too frustrating. She gave herself credit for trying and moved on. If you begin to feel you’ve failed, be as generous with yourself as you would be with a loved one.

Use positive thoughts. Negative messages increase anxiety and keep the ANS sending out those danger signals. Rephrase to make your experience positive. For example a problem is a challenge—something to make life more interesting. Instead of thinking, “I can’t do that anymore” tell yourself, “It won’t hurt to try.” Trying and not succeeding isn’t failure; it’s a learning experience. When you take longer to do something than in the past, don’t consider yourself too slow. Think instead, think “I have plenty of time.”

Remove negatives like can’t, from your vocabulary. Like Jan, you may find some tasks that used to be easy are now frustrating. Instead of telling yourself, “I can’t do that anymore” think, “I’m taking care of myself by eliminating unnecessary frustration.”

Listen to music. Soft, easy listening music is relaxing for most people. Our bodies will slow down or speed up to match the music. It is also a part of many stress management exercises. Be careful not to let it be distracting however.

Exercise. Besides including regular exercise in your schedule, add a little more when you feel uptight. There is a strong connection between exercise of any kind and stress reduction. It increases your feel-good endorphins, improves your mood, distracts you and becomes “meditation in motion.”

Do deep breathing. Stop whatever you are doing and take some deep breaths immediately when you begin to feel stressed. Taking slow deep breaths increases oxygen and adds to your reserves. This slows a racing brain and helps you think more clearly. You can do deep breathing anywhere, anytime. However, regular practice is also important so that when you need it, you can do it correctly. Be careful not to hyperventilate by exhaling more air than inhaled. This results in dizziness and adds to the problem instead of reducing it.

A Caregiver's Guide to Lewy Body Dementia is a resource book for all LBD caregivers. Go to The LBD Book Corner in LBDtools.com  to buy the book from Amazon. The small fee they pay us helps to support our work.

LBD and Stress 4: Preserving Familiarity

When dementia starts changing a person’s life in often scary ways, avoiding change and maintaining the familiar becomes critical. Once variety and change may have been fun, exciting and enlightening. Now they move the person away from the known where there is still a sense of control. As the ability to adapt and learn diminishes, so does any appreciation of change. It is the enemy, stealing away feelings of comfort and security. Thus change and variety become stressors and keeping everything as much the same as possible adds feelings of safety and comfort—the opposite of stress.

As with other symptoms, this need for sameness may start well before any cognitive issues become noticeable. Someone who has loved to travel may resist taking a trip, especially if it is to a strange place. A person may have loved to go to the theater but now prefers to watch a video at home. The every-changing crowds that used to add to the fun of theater-going now cause agitation and anxiety.

If you and your loved one are still early in this journey, a certain amount of variety may still be tolerable, even enjoyable. Start now to prepare for when it isn’t. Now is the time do some of the things that won’t be enjoyable later—take that trip you’ve been talking about for years or buy season tickets to the theater. It is also the time to set up routines and rituals that will provide your loved one familiarity later when change is stressful. And finally, it is the time to look ahead and see what else you can do to ensure less change in the future.

Familiarity can be expressed in the way we act and in our relationship to the places and objects around us.

Familiar actions. Routines and rituals are comfortable for us all. Most churches have a set ritual of praying, singing, etc. that helps members feel at home no matter what city they may be in. Mothers know the value of bedtime routines and how they can prevent resistance. A familiar set of actions carries a person along to an expected destination with little effort. Doing something the same way every time can be boring for the person who thrives on change. However, for the PwLBD, rituals and set routines have a soothing, almost mesmerizing quality that decreases stress and fosters comfort.

Developing set routines for bedtime, eating, traveling and the like builds in the comfort and safety of familiarity. If you know exactly what is going to happen, it is easier to take that next step—and the next and the next. Routines for activities like eating out will greatly increase your loved one’s ability to do so with enjoyment. For instance, you could start going out to eat with a friend at the same time and place every week.

Familiar places. Home is of course our most familiar place. Your loved one will be much more comfortable at home than anywhere else. Expand that sense of comfort by building routines of outings such as visits to favorite restaurants and stores. For instance, take the same route in the car, ask for the same table at the restaurant, go through the aisles in the same sequence, and so on. While this may seem boring now, it builds routines that makes it easier to do these things later.

Familiar placement. Find the best placement plan for furniture and other objects and stick with it. When your loved one can count on the things being in the same place day after day, this gives them a sense of control. Move a chair to a different position and this fragile feeling of control is replaced with stress.

Familiar objects. You can make less familiar places seem more inviting by adding personal furniture, photos and other well-loved items. This works well when a move to assisted living is necessary. It also works well when traveling when a favorite blanket can add a touch of sameness that may make the difference between comfort and anxiety.

Buy the same clothes. New clothes used to be fun and even exciting. Now they are just add confusion and take away that feeling of being in control. If your loved one needs new underwear or a new jacket, buy something similar to what they’ve been wearing. Don’t even change the color. The comfort of familiarity is much more important than style—or even functionality, in most cases. When you do have to make changes, don’t make any more than necessary. For instance, replacing the lace-up shoes that the Lewy partner has worn for years with Velcro-fastened shoes can help with independence. But try not to change the color or style.

A Caregiver's Guide to Lewy Body Dementia is a resource book for all LBD caregivers. Buy it from Amazon through The LBD Book Corner on LBDtools.com and help to support our work.

LBD and Stress 3: Decreasing Triggers

Last week’s blog was about identifying triggers for stress. Here are some of the more common stressors and some solutions that have worked for others:

Too many people. LBD limits the ability to focus and make multiple choices. Crowds add extra stress with movement and commotion everything can become a jarring jumble.

Fix: Avoid crowds. Learn when malls are least crowded and go shopping then.

A more creative fix: Find a way to isolate yourself from the stressful hubbub of noisy active groups.

Donna, who has early onset dementia, tells this story:

I’ve always loved going to the zoo and so when my husband, Nick, suggested we go, I didn’t hesitate to say yes. It was a crowded Saturday but Nick brought along my ear-buds and MP3 player. When the kids and noise got too much for me, I just turned up the music and tuned them out.We stopped to rest in quieter spots so I could regroup. After about 2 hours I was beat; losing focus and balance (that happens when I get tired) but the ear buds and quieter places worked. I had a great time.

Eventually, Donna’s ability to deal with other aspects of the crowd will likely decrease and music alone may not be enough. However, at this stage in her journey, her MP3 player allowed her to spend an afternoon doing something she loved, even in a crowded atmosphere. Adaptation is the name of the game!

Sensitivities—Lewy’s sensitivity issues can make a light appear brighter than it actually is. Noise may appear not only louder but distorted as well, adding fear.

Fix: Avoid bright lights and loud noises.

A more creative fix for bright light indoors: Sunglasses don’t have to be just for outdoors. When you see your loved one squinting indoors, try sunglasses then too.

Media, especially the TV—As the ability to differentiate between fact and fiction decreases, an exciting or scary television show can feel real and thus, be very stressful.

Fix: Monitor the TV and make an effort to choose shows less likely to cause stress.

A more creative fix: Select some low-stress DVDs for your loved one to choose from instead of TV programs. This helps to maintain a sense of control while eliminating possible triggers for stress.

Physical discomfort in the form of illnesses, infections, injuries, constipation, and other irritants can be present and yet not always recognized as such by your loved one. They just know they are uncomfortable and react accordingly. Find the discomforting trigger, fix it and the stress level will decrease.

Fears and other negative reactions—A damaged ability to communicate and impaired thinking skills work together to trigger stress. These problems will be addressed in later blogs.

Evaluating Your Success

Once you’ve found the trigger and made an attempt to change the situation, take time to evaluate your success. This way you will have a better idea of how to prevent or decrease that particular stress in the future.

In your journal, keep a record of your efforts. Answer questions like these:

• How did you know there was stress? Was there a certain behavior or action? What was the behavior’s hidden message?
• What was the stressor? How would you recognize it next time? What can you do to keep it from appearing again? 
• What did you do to change the situation? How effective were your efforts? What would you do differently next time?

Use this information to improve your stress management skills. Next week, the blog will be about retaining familarity--an important aspect for anyone who is losing control of their life--and their surroundings.

A Caregiver's Guide to Lewy Body Dementia is a resource book for all LBD caregivers. Buy it from Amazon through The LBD Book Corner on LBDtools.com and help to support our work.

LBD and Stress 2: Finding the Triggers

Our likes and dislikes vary and so do our stressors. Anything perceived as painful, annoying, threatening, or disrupting will add stress and when continued, will eventually become too much to handle without internalizing it. The problem for the PwLBD is that with a much lower threshold, “too much” comes quickly.

Internalized stress shows up as a variety of illnesses: high blood pressure, headaches, diabetes, cancer and more. The more intense the stress and the longer lasting the greater the risk. Where an illness, such as dementia, is already present, internalized stress makes the symptoms worse.

With dementia, stress often shows up first as agitated behavior or increased acting-out. Find the trigger and you can probably decrease the stress.

Stress is individual. What bothers one person might not bother someone else at all, and vice versa. While everyone reacts differently, the body’s initial physical responses to stress are the same. Physical signs of stress include increased heart rate, feelings of anxiousness and tense muscles.

Stress is caused by something. Become a sleuth and look for the triggers. Each person’s triggers will be different. They can be anything—a certain word or sound or sight, anything. Bill’s was a word:

I always kissed my husband and told him goodbye when I left his nursing home at night. But he’d wake up agitated in a couple of hours. --Barbara

Bill’s trigger was Barbara telling him goodbye—the agitation was his body’s way of communicating the fear that she wouldn’t return.

Look for:

• Fears like Bill’s and their triggering words, phrases or events.
• Pain such as infections, aches, illnesses or sores.
• Irritants such as an uncomfortable sitting position, wet clothes, hunger, frustration.
• Sensitivities such as bright lights, loud sounds or Lewy-dangerous drugs.
• Excesses like crowds or too many choices.
• Hunger, tiredness or illness.

I learned that if I waited until Bill was asleep and sneaked out, he might still wake up but he wasn’t agitated. –Barbara

Barbara removed the trigger and Bill’s stress-related actions stopped. Once you have an idea of the trigger is, your next step is to change or eliminate it as Barbara did. We’ll share more suggestions about stopping stress next week.

A Caregiver's Guide to Lewy Body Dementia is a resource book for all LBD caregivers. Buy it from Amazon through The LBD Book Corner on LBDtools.com and help to support our work.