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.

Caregiver Care is Dementia Treatment Too

“Caregiving sneaked up on me,” Janet told her group. “LBD stole our relationship as best friends, lovers, and co-decision makers and left us with a caregiver-patient relationship neither of us wanted. He feels totally dependent on me and I feel overwhelmed and overworked. Don’t get me wrong. I still love Mark and want to care for him. But, if it weren’t for all of you, I’d feel so alone.”

Many LBD caregivers are in Janet’s shoes. Some don’t have a support group and so for them, it’s even worse. Caregiver stress is a very real part of the LBD picture. And remember, your loved ones reflect all of your feelings and so if you are stressed, they are too. Caregiver care is NOT a luxury. It is as much a part of your loved one’s treatment as the dementia drugs and good behavior management. Here are some steps to decrease your stress:

1.Early in your LBD journey, institute a “day out” for yourself. You may not feel the need for it yet, but the goal now is to get your loved one used to you going off for a few hours—and coming back refreshed. If you make this a part of your regular routine now, it will be easier for your loved one to accept later, when they are more dependent.

2. Find a support group. Any caregivers support group is helpful, but a dementia caregiver’s group is better and one specifically for LBD is best. You need a place to vent, to ask questions and find answers, and to know that you aren’t alone. Find an online LBD group too. They especially valuable if you don’t have a local LBD group and are great for 3am venting. Research has shown that caregivers who have a support group can keep their loved ones at home longer. I've listed some links to support groups at the end of this blog.

3. As your caregiving job gets more difficult, consider home health care. Again, this is NOT a luxury. It will extend the time you can keep your loved one at home and it is much less expensive than residential care. Not only does it take some of the physical load off your shoulders, it also gives you time to get out of the house and do something for yourself.

4. Hire a "housekeeper."  If your loved one is still able to care for himself but you are hesitant to leave him alone, consider hiring someone to do “housekeeping” for a few hours a week (or oftener) with the understanding that part of their job is to keep your loved one safe. This may be easier for your loved one to accept and it still makes it possible for you to get some respite, knowing your loved one is in good care.

5. Consider adult day care. If you are working, this may be a necessity unless you can find someone to come into your home. If you aren’t, it can give you a few hours of respite a day or a week. Again, start this as early in the LBD journey as you can so that it becomes a routine. Sometimes, staff will welcome early dementia patients as “volunteers.”

6. Consider residential placement without guilt. When, even with extra help, you are feeling stressed, it is time—probably past time—for residential placement. Again, this is not just for you. Nancy put it this way, “When I finally gave in and put Ed in a residential home, we got our marriage back. When I didn’t have to spend my energy and time on physical caregiving, I could be Ed’s wife and companion again.” Maria said, “I felt so guilty about having to put Gary into an assisted living program. But after a few months, I discovered that with adequate sleep and more self-care, I was a better person—and a better caregiver. I was more caring and patient with Gary. Now I wish I’d done it sooner.”
Links for LBD Caregiver Support Groups:    

Caregiver Support Group Links:
Local LBD Caregiver groups.  Also check with your local Alzheimer’s Chapter. Some have LBD specific support groups. We’ve been to two (Irvine, CA and Seattle, WA) and found them very Lewy-savvy and supportive.
Online groups:
 LBDA Forums (like online support groups for anyone, divided into topics)
Caring Spouses (spouses only)
LBD Caregivers (for anyone).

Happy Triggers

Most caregivers have learned to look for triggers that increase stress—and acting out. But do you also look for triggers that decrease stress? Like the acting-out triggers, these “happy triggers” can be very individual but there are many that work for most of our LBDers.

Music is one of the more general happy triggers. It works wonders with many people. Usually, soft elevator or easy-listening music is best, but consider individual tastes too. Or maybe it is just one tune that brings back feelings about happy times. Or a specific kind of music. Beth told of how her mother had collected music boxes. When she visited her mother, she’d play them. It not only calmed her mother, it pleased the other residents too!

Touch is another fairly general happy trigger, especially when used with a gentle tone of voice. Remember to move slowly and touch softly. Harold paced when he became agitated. His wife learned to go up to him and, putting her hand gently on his arm, talk to him softly. “It didn’t really matter what I said,” she told her group. Just the words and the touch made him less agitated. And then I could steer him over to his chair and he’d sit down.”

A third are family photos. Whenever Judy placed an album filled with family pictures in her father’s hands, he would calm down. He loved to look at the photos even though he couldn’t identify all of the faces anymore.

Tools of a past trade or hobby often work well as happy triggers. Lydia had been a librarian. Her “happy trigger was a book. Give her one and she’d smell it and hug it to her chest and smile. For Janice, the mother of five, it was a baby doll. Some feel that using dolls with dementia patients is demeaning and “infantizing.” Our own take on this is that if it the doll has a calming effect on your loved one, it is a shame not to use it.

The further along the LBD journey your loved one is, the more they rely on feelings rather than words and concepts. And so a happy trigger can be anything that generates positive feelings, feelings of adequacy and even accomplishment, of safety and security, of love and affection, of comfort and fun. Don’t forget humor. Not being able to express humor anymore does not mean that it isn’t appreciated. And so, to find your loved one’s individual “happy triggers” think about what has made them happy in the past. They are still the same person, after all.

Of course, you must take into consideration LBD’s sensitivities. Jerry once loved loud music—the faster and louder the better, but now hearing it makes him agitated. Myron once loved to go to a crowded mall and people watch. Now crowds overwhelm him. You also have to take into consideration their lost executive skills. Ella loved TV mystery shows. Now she can’t tell what’s real and what’s not and she becomes frightened because she believes she is in danger.

Parkinson’s families learn to adapt for their loved one’s mobility issues. Leon walked miles each day; now his wife pushes him around the block in his wheelchair when he gets agitated. In fact that’s the name of the game for all LBD families. What other kind of music might be a “happy trigger” for Jerry? Where can Myron indulge in people watching when he isn’t in a crowed mall? What other kinds of TV will entertain and calm Ella? It’s all a matter of trial and error.

But once you’ve found your loved one’s happy triggers, use them. Of course, you won’t need them as much if you’ve also found those things that trigger the acting-out and do your best to avoid them. Use the happy triggers when the acting-out occurs anyway and you’ll both be happier. In fact use the happy triggers often, with or without acting-out. Why not? We all like being happy!

Taming LBD

No one wants to have LBD or wants it for their loved one. The normal, even healthy, first response to such a diagnosis is denial. It protects the mind and provides some time to adjust. However, when it lasts past this adjustment period, it becomes destructive. Whatever you are denying—in this case, the LBD—is like a terrifying animal that has invaded your home.

You feel compelled to spend all your energy and resources hiding from it and protecting yourself from this unwelcome invasion. But this allows LBD to do just what you fear. It takes over your life, limiting it much more than need be. When denial is effective, it blocks you from doing anything to deal with the problem—there isn’t any problem after all. When it slips—and it always does, you feel the pain of what you perceive as an unbearable truth.

Release the denial and you’ll find that the truth IS bearable—not what you wanted, but definitely bearable. When you accept that Lewy is a part of the family, you release all the energy that had been used to hide from it. Now you can use that energy to tame the frightening, ferocious animal you perceived Lewy to be. No, it will never be the sweet little pet you wanted, but it can be tamed.

The taming starts with rephrasing. It’s not dementia. It’s a disorder. This is true and it sounds less scary. Yes, dementia is part of the disorder, but it is part of many disorders. It is progressive rather than degenerative. Both are true, but progressive reminds you that LBD’s progress is very slow and that your efforts can slow it down even more. It is treatable, rather than incurable. True there is no cure, but there are many ways to treat, or tame it; to slow it down, to make it less difficult. Keep on the lookout for new words to rephrase. Each one helps.

Using humor helps too. Choose laughter instead of embarrassment. When you or your loved one forgets or can’t do something that used to be easy to do, joke about it. Laugh with your loved one, not at them, of course. Like denial, embarrassment is stressful and holds you back. Humor releases tension for both of you and allows you to move on. It may not be easy to laugh or joke about something that feels so frightening and serious at first, but it becomes easier as you make humor a part of your “self-treatment.”

Talk about it. The more openly you can talk about the disorder, the tamer it becomes. When it is simply a fact of life that you can work around, it stops being a scary monster taking up so much of your emotional space. When you share what’s going on with you with others, you will discover that they are more interested than rejecting and more supportive than pitying.

Finally, become a seeker instead of an avoider. Make it your job to learn as much as you can about LBD. Find a support group; use the internet to research; ask questions. Again, the more energy you put into knowing and understanding this disorder that has invaded your family, the more you can tame it and maintain your quality of life.

PDD: Fighting the Odds

A recent study found that over 65% of Parkinson’s patients age 70 and older will have begun to develop Lewy body dementia, the type called “Parkinson’s disease with dementia (PDD). That's the bad news. The good news is that there are many things that PD families can do to fight those odds—to extend the years prior to its appearance and to decrease its effect even after it does show up.

1.      Accept that dementia is a likely PD symptom—sometime. Understandably, acceptance may be difficult. However, without it, you aren’t going to succeed with the other steps. You can't fight something you don't believe is an issue.

2.      Maintain a healthy life style. Stay physically, mentally and socially active and being proactive about what you eat. This is true anyone who wants to avoid any kind of dementia. (That’s all of us, right?)  You can find information about this in many places. Several books in our Book Corner discuss the importance of a healthy lifestyle, as do articles on the LBDA and Alzheimer's Assn websites. Or just google "avoiding dementia" on the internet.

3.      Be alert for drug sensitivities. The ones of most concern are inhaled anesthetics and behavior management drugs. There is a very thorough review of this problem in our book, and it should be required reading for every PD family. Be sure you know the risks before you agree to major surgery. Behavior problems related to LBD can show up long before any noticeable signs of dementia and the drugs often used to treat acting-out are among the most dangerous for a PDD patient. In fact, as LBD encroaches, drug sensitivities in general can increase and so be careful with all drugs. Start with a much lower than normal dose of, for instance, an over-the-counter cold medication or headache remedy, and work up until you get the benefit you want—or side effects you don’t.

4.      Do all you can to decrease stress. For some reason, LBD increases with stress. Identify those areas in your life that are stressful and work with your family and friends to make them less stressful. For instance, if you have communication difficulties, consider a relationship counselor so that you can smooth things out.  If your job is stressful, can you change jobs—or even retire? Reduce clutter in your home. Check light levels-many PD and LBD people are light sensitive. There are many more ways to reduce stress. Some are mentioned in our book, some in Pat Snyder’s book, others you will think of as you go along.

If you maintain a healthy lifestyle, are very careful about the drugs you use, and work diligently to keep stress levels low, you can extend the “good years” for a long time.