Lewy Body Word of the Month for 10-16: Stress

When dealing with dementia, there is lots of stress. Each person has a stress threshold, the amount of stress they can handle without calling in the reserves. Any illness, including dementia, stresses the body which lowers this threshold.

The body gives managing stress overload high priority. When it overflows one's threshold, the body diverts resources from lower priority tasks, such as managing dementia symptoms, to deal with this overload.

Stressors are anything that causes physical, emotional, or environmental discomfort or distress.

You can often decrease dementia symptoms (or the symptoms of any disease) by decreasing their stressors.

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

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.

Traveling with Stress

We've been traveling, and experiencing multiple challenges. Every year we plan to leave Arizona and spend a good share of the summer in Washington State. Usually we leave in late May or early June. We make a leisurely trip north, taking a couple of weeks, with stops along the way to visit family and friends. This year was different. We weren't able to leave until mid-July and we didn't have time for visits on the trip north.

Just getting ready to leave overly warm Arizona was a challenge. Jim needed several unplanned-for doctors appointments first. We finally left with stitches in his arm where the doc had removed a skin cancer. Nurse Helen removed the stitches and that is now fine. The thermometer hit 120 degrees before we were finally able to pack up and go. We managed a marathon five-day trip in the motor home, driving 7-10 hours a day to arrive in Kettle Falls WA, up near the Canadian border for a family reunion I'd been helping to plan. Then we went from there to the family farm where my daughter lives for some more family time. Both were enjoyable but we ate something...or did something...and we've been laid low with digestive problems ever since. (I definitely do not recommend living in a motor home with two people with diarrhea!)

Jim's illness was more serious than mine. It was also more worrisome because anything stressful can trigger his Crohn's disease which has been thankfully dormant for over a year. Thus, I have had the honor of being caregiver when I wasn't feeling my best. I am blessed that even when he hurts, Jim is a gentle patient. Even so, we are both stressed and that of course, makes everything worse--and the likelihood of the Crohn's greater although so far, it is still quiet. The whole thing is a vicious circle that is hard from which to escape The difference for us is that we know that we will both recover and be able to move on with our lives. Our hearts go out to all of you who are dealing with less temporary situations.

We are now on our own in a favorite RV park. I am feeling better and we hope that soon Jim will too. From the time we left until now, we've not opened our laptops and so this is the first chance I've had to post. I think that is the longest I've gone without checking at least my email for over a decade! Sorry this is so late. I planned to post ever two weeks but it's been much longer. That's the way it is when life throws you curve balls.

For 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

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.

Preparing for That Long Slide

Two weeks ago, this blog was about recognizing that more than normal fluctuations had happened and the stress that accompanies such a slide. This week is about things you can do ahead to prepare for that time. Remember, preparation is like insurance. You certainly don’t want whatever it is you are insuring against to happen, but you know it can. Experiencing such a slide is going to be stressful no matter what, but having a plan in place and information available will go a long ways towards limiting that stress.

Know where to get help. Develop a list of places and people that may provide the help you will need. Call them now, while you aren’t in crisis and find out about their services. Sort them out by groups and grade them so that you will have a first and second choice when the time comes.

Plan for respite care: Jim and I are fans of planning a respite routine well before it is actually needed. Start out with just a few hours a week. Then with a routine in place, it can be expanded when you actually do need to get away for a while, even overnight. This initial time is very stressful for both of you. Having a respite routine in place will reduce your stress because you will already have a plan. It will reduce your loved one’s stress by keeping change at a minimum.

You may already have friends or family coming to stay occasionally. This will not be enough. You will need more than a few hours of time that is often clouded by worry that your helper may not know what to do if something goes wrong. After a long downturn, regular respite care needs to start as soon as you can get it set up. You can choose between at home help or respite care in a long term care facility, or if your loved one can still function well enough, adult day care. The same issues that apply to choosing long term care apply to chosing any of these.

If you plan to use home care, start using it immediately for a few hours a week—enough to build a relationship with your helper. If you plan to use respite or day care, start visiting the facility. Go to lunch or dinner there, and use their day care services. Even “take a vacation” together and visit overnight.

Equipment: You may suddenly need a wheelchair, a bathroom commode, a hospital bed or even a lift. Know where you can get these supplies. Physicians can write prescriptions so that Medicare will cover much of the cost. Find out now what the process is for this to happen. For example, can you call in your request or does the doctor need to see your loved one and evaluate the need?

Hospice. This may sound extreme, but it is also practical. Hospice offers the services and equipment you need to make your loved one more comfortable and you less stressed.

Walter’s slide happened after a bout with a UTI. The doctor told us the end was likely near and suggested Hospice in our home. It helped physically but I became really depressed. I checked out funeral homes and looked at urns. It’s been three years now and Walter is still living. He never recovered from his downturn but he still has periods of awareness. That’s when he tells me he is going to live a lot longer than I think! Walter was on Hospice for a year before they decided he didn’t qualify. By then they had helped me over my depression and I was able to find a LTC facility for him close to home. --Joan

Hospice requires a doctor’s documentation that death is likely within 6 months. However, many people, including those with LBD, recover enough that they go off hospice and live for many months or even like Walter, for years longer. That’s because hospice is designed to decrease stress and we know what stress does to the Lewy team! Using hospice is not an admission of failure or even that the end is coming in less than a year. It is a practical use of available services in a time of severe need. Hospices vary in the services they provide. Read more about Hospice in the 6/15/13 blog.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

The Long Slide

You expect LBD to fluctuate. That’s one of its defining symptoms. But, then there comes a day when functioning takes a long slide downward, with a lot more confusion, agitation, sleep problems and less mobility.

When this happens, the caregiver won’t be able to think clearly either. “I told myself that fluctuations happen and upturns follow downturns,” Mary said. “Until that last slide, Lloyd still had wonderful periods of alertness. I couldn’t believe that would end anytime soon. I knew that with LBD, a downturn could be steep and that a person seldom returned to their former functioning. But I guess that I felt that planning for such a slide was inviting it to happen. And so when it did happen, I wasn’t prepared. I was overwhelmed with the extra work and the additional worry but I didn’t even recognize that I was in crisis too until a friend asked me if I didn’t think it was time for more help.”

Any number of situations can bring about these sudden downturns: A simple cold or a serious kidney stone attack; a fall or a painful injury; ongoing problems like UTIs, dehydration or even a supposedly good thing like too much excitement over a happy event. Or even nothing identifiable. A healthy, low stress lifestyle can extend cognition and improve quality of but it does not necessarily extend life. When reserves built up by careful living are gone, mind and body degenerate very quickly. It is no one’s fault. It is simply the nature of the disorder.

As when your loved one can no longer make their own decisions, this is another turning point for which it helps to prepare, earlier than later. Like Mary, it is easier to think that things will go gradually downhill, with expected fluctuations but nothing drastic. They likely will, perhaps for years. But the chances are that eventually, a slide will happen. What will you do then? How will you deal with it when all of your energy, time and attention are taken up in dealing with these new, overwhelming problems? Preparation for a downturn does not mean that you expect or want it to happen. It means that you know it could and that by being prepared, you won’t add to the problem by being so stressed. Think of such preparation as insurance—something you hope you never need but will be very grateful for if you do need it.

As it did with Mary, a downslide tends to sneak up on you, adding work and worry. Before you realize it, you will be so embroiled in just getting by day to day that you may not recognize how stressed you really are—or know what to do about it if you do recognize your stress. Thus, the first step in preparation is setting up a system that will help you recognize that this downturn is different from those in the past.

Make a list that you check daily. If you answer yes to any of these questions, it is time to call for help:

• Has it been more than a week since the slide, with little or no recovery or worse, more decline?
• Am I are feeling overwhelmed by the physical requirements of caregiving?
• Am I getting so little sleep that my caregiving has suffered. Am I less patient or easier to anger?
• Do I feel that there are not enough hours in the day for everything I need to do? Do I seldom take anytime just for me? Am I too tired to enjoy it when I do?
• Am I still un-revived by a few hours of respite? Do I come back still feeling overwhelmed, anxious or tired?

Of course, knowing that you are stressed simply creates more stress unless you know what to do about it. Next week will continue some ways you can prepare for that long slide, and have the information you need ready to use when the time comes.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Guilt, Stress, Depression and Burnout

Guilt. Caregivers will often feel guilty about not being perfect: about losing patience, about feeling resentful, about having to place their loved one in a residential facility, about wanting time for themselves, and on and on. Caregivers also say they feel guilty for “selfishly” taking time for themselves and other such behaviors. This guilt often leads to excessive stress and depression.

Stress appears when you feel overwhelmed by your physical needs, worries, responsibilities or expectations. Symptoms are depression, anxiety, irritability, lack of concentration and social withdrawal. In addition, you may feel anger at your situation or even at your loved one (usually accompanied by guilt!), exhaustion, sleeplessness (from nightly caregiver responsibilities or worries) and a variety of increased health problems. Denial about the disease is also common.

Depression is a major symptom of stress but it often follows loss as well. You feel so low that you lose interest in once pleasurable activities. Depression shares many symptoms with stress, such as feeling sad, anxious, worried, restless, hopeless, helpless, lonely, irritable, guilty, or empty. You may also experience insomnia, fatigue, loss of appetite or overeating, or have problems concentrating, remembering details or making decisions. Although suicide is also a risk, caregivers are less apt to consider this because of their feeling of responsibility towards their loved ones.

The above three often combine in a variety of ways to cause burnout. In fact they go together so much that it is hard to separate them. They are all common with caregivers in general and even more common those that care for someone with dementia. Dementia caregivers also tend to be older than other caregivers and that doesn’t help. We get tired faster and sicker more easily and the dastardly three sneaks in and drives us to burnout.

Burnout is when you feel emotionally and mentally exhausted. A once caring person has little energy left to provide adequate care or often, to even feel concerned anymore. Since stress and depression often lead to burnout, it is no surprise that symptoms include those in both conditions, as well as changes in appetite or weight or both, changes in sleep patterns, increased illness, and even feelings of wanting to hurt yourself or your loved one.

This is a job few people sign up for or train for. However, when it is your loved one, you step up and do your best. It usually involves loss—loss of your way of life, loss of your loved one’s health and even your own, loss of financial security, to name only a few. Family caregiving is usually a 24/7 job, with a growing list of physical, menial and emotional responsibilities that can stress and eventually overwhelm the most dedicated caregiver. When that happens, burnout is present.

Caring for your loved one’s caregiver is your primary job—it must come before caring for your loved one. This idea may sound radical, but it is based on the same principles as the airline steward’s message to don your oxygen mask before you try to help anyone else. Intellectually, most caregivers know this. But we all tend to forget, and to get so involved with caring for our loved one that we forget and let our own self-care go—or we call ourselves selfish when we do something for ourselves when we could be doing something for our loved one. Change “selfish” to self-caring, and let go of that guilt!

Future blogs will discuss ways to avoid burnout.

Read more about these three issues in our books:

A Caregiver's Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders.

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 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.

LBD and Stress, Part 1

Stress is not necessarily bad. It keeps life interesting and fulfilling. It is only dangerous when it exerts more pressure than there are resources to deal with it. Excessive stress is a risk factor for almost all illnesses. LBD attacks the autonomic nervous system (ANS) and lowers the threshold for stress while adding the pressures of living with a progressive disorder. Therefore, stress management becomes a priority for anyone dealing with LBD—or any other degenerative disorder. It will slow the disorder’s advancement and decrease its symptoms.

In response to a threat or challenge, the autonomic nervous system (ANS) prepares for fight or flight:

Perceptual abilities increase so that you can sense what’s happening and respond quickly.

The heart rate (pulse) and breathing speed up, and blood pressure increases, sending more oxygen-rich blood to the large muscles.

Large muscle tone increases. A person can hit harder, lift higher, or run faster.

A PwLBD who misinterprets an event as a threat may use their additional strength to “protect” themselves physically, striking out and even hitting the caregiver. More often, the stress is internalized—turned into illnesses, and with LBD, increased symptoms. There will be more hallucinations, more delusions, etc.—and even more stress.

The ANS also decreases resources for thinking, digestion and the immune system, which are less involved with fighting and fleeing:

Thinking takes time that a crisis does not allow. Therefore, it is not given top priority by the ANS and one’s ability to think creatively or see associations during stress is impaired. Instead, we depend on learned responses. You can see why a PwLBD, whose thinking is already damaged and who already acts from impulse rather than reason, functions poorly during stress.

Digestion is an ongoing process that can be sacrificed during times of crisis to provide extra energy for more needed functions. That’s why a person may feel nauseous or constipated, or have diarrhea when frightened. Lewy also compromises this system, with increased results during stress.

The immune system. Immunity is a long term process and the body can safely shut it down for short periods so as to have more energy to fight more immediate battles. LBD tends to increase the frequency of infections already. This puts the PwLBD at even more risk.

One way to manage stress is to increase its threshold—the amount of stress a body can tolerate before feeling overwhelmed. A healthy lifestyle builds up the body’s reserves and raises the stress threshold. This means getting lots of exercise, eating a healthy diet (9/5/13 blog), drinking enough water and getting plenty of sleep. This is true for caregiver and loved one alike. Staying healthy allows the body to use its resources to deal with the stress instead of the infections or other illnesses.

Controlling the body’s responses preserves one’s resources. We can choose how to respond to the events in our lives. Techniques like acupuncture, acupressure, massage or even gentle touch (6/21/13 blog) help you to respond to potential stressors with less anxiety and agitation. Deep breathing and a variety of meditation methods also use the brain’s power to send calming messages to your body.

Another way to deal with stress is to decrease the amount a person has to deal with. Controlling the environment limits stress by eliminating triggers, and decreasing pain, fear, or other discomforts. Find the triggers, change the situation, and stress-related behavior will usually stop. However, as communication becomes difficult, this is not always easy.

Recognizing behavior as communication helps caregivers to identify stressors. As verbal communication decrease and damaged thinking skills keep a person from understanding what pains them, behavior often becomes the major mode of communication.

In the next few weeks, we will discuss stress management and viewing behavior as stress related communication.

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

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.

The Three A's: Assessment, Adaption and Acceptance

Being continually aware of how your loved one is doing—what triggers stress, what brings peace. Noticing the little things before they get big. Keeping your doctor’s appointment. Evaluating how the medication works—or doesn’t work. Keeping track of the behavior patterns, the cognitive levels, etc., etc. That’s the assessment part. You and the doctor need to know what you are dealing with and you are the one on the front lines. You do the first assessments—and if you are smart, you write it all down. Not only is a written record valuable to your doctor, it is to you too. You are a busy person and can’t be expected to remember every little thing. Some little thing that you document may be just what you need when you are trying to figure out what triggered your loved one to act out, for instance.

And then there’s adaption, a very necessary part of dealing with this disorder. Lisa, the wife of a man with LBD wrote, “The disease marches ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path, not too unlike Sherman's march to the sea during the Civil War.” She continues, “ Luckily, it is slow. It eats away in little increments, allowing time for the patient and family to adapt. We liked to travel—and we still can. We traded our large 5th wheel camper for a minivan and stay in hotels. When my husband’s driving became scary, I took over that chore, BUT we still travel. With similar adjustments, we still eat out and fish and go visiting family and friends. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I often have to remind him (and myself) that the disease hasn't stopped us from doing anything we love to do.”

And that’s where the attitude comes in. Lisa asks, “Does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee?” She says she knows that eventually his condition will stop their travels and evenings out with friends. “But until then, we adapt and enjoy every moment we have.”

When the doctor recently asked Lisa's husband how he was doing, he answered, "I think I'm doing fine." He said it with a smile and he meant it. And that's when she really got it. Although the disease had progressed from their last appointment six months ago, they really WERE doing fine, adapting and moving ahead with life. Lisa ended with, “In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it?”

What more can I add?

Thank you, Lisa, for letting us use your insightful online support group entry.