Diffusing Essential Oils

Last week's blog was about lavender and how helpful it can be during the holidays. There are some other essential oils that can also be helpful. Aromatherapy makes them very easy ways to add a calming element to the holidays. Just put the scents out there in the air and let them do their work. Remember, even if your loved one has lost their sense of smell, aromatherapy may still work. But first, you should know a little about the different ways of doing that:

• A warm air humidifier (or diffuser) is least effective method for aromatherapy. Heat changes the qualities of oil and usually decreases its effectiveness. Many of us use humidifiers, especially in winter, when heaters dry out our indoor air. Try adding a few drops of essential oil. It won't hurt and it might help--and it will add an enjoyable scent to the air.
• Candles smell lovely but you still have the heat issue. Again, use and enjoy, but don't expect them to be very helpful as a relaxing agent.
• A nebulizer uses full strength oil. While they are very effective, they are also very expensive. Essential oil nebulizers are not like those you carry around and sniff. They are more like diffusers, except that they don't require water. They do have their uses. One is that they often offer programming. I have one that I use to diffuse a blend of oils that helps me sleep without getting a stuffy nose. I set to run a few minutes every half-hour. Then I connected it to a 24 hour timer set to run only at night. I believe the high cost of the unit ($100-$150) is worth the continuity I get. With the timers, my oils last a long time too.
• A cool mist diffuser is both effective and inexpensive. You can get a good diffuser for between $15 and $25. Usually you just add a few drops of your favorite oil or blend to the water and let it "peculate." I keep one near my desk where I work and one in the living room where I relax with different blends in each one.

You can also mix your calming oils with a carrier oil such as coconut oil and use this as a massage agent. While massage is more work than aromatherapy, it can be quite effective. In addition, it adds a rewarding element of togetherness to the mix.

There are several other oils besides lavender that are known for their calming qualities: bergamot, cinnamon, ylang ylang, geranium, patchouli, rosewood, jasmine and basil. In addition, peppermint and the citrus oils--lemon, ornate and pink grapefruit are all uplifting and energizing.

Next week: More about these oils and a few others that can help with after-holiday stress "leftovers."

For more about essential oils that are most helpful with dementia, read our 12/8/2017 blog.

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.

Merry Christmas

Merry Christmas. Today we celebrate our own holiday with our family. It is a few days early, but they will be traveling to spend Christmas Day with other family. The day doesn't really matter. What does is this chance to be together with our loved ones, to see some we don't get to see very often and to spread our hugs around. We wish for you all the happiness and love this time of the year brings.

Next week, the blog will continue the series on essential oils.
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

 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.

Lavender and the Holidays

Holidays were always times of joy and excitement and fun when our kids were growing up, and then when they had kids of their own, it got even better. But now, not so much. We still look forward to seeing family but Dave can't stand much excitement anymore. I've wondered about using something like lavender in our essential oil diffuser. Could it make a difference? Would he be able to spend more time with our normally active grandchildren or enjoy a family dinner filled with happy chatter? Marie

Well, Marie, I doubt that anything will stop Dave from being overly sensitive to all those things that go together to make what used to be a fun holiday gathering but now trigger anxiety and other unwelcome LBD symptoms. But yes, lavender may decrease these. It is definitely worth a try, but do use it carefully. The active ingredients in lavender may be "natural" but they are still chemicals. Like drugs, they may have adverse effects--opposite of what you wanted. That is especially true for lavender if you use too much. And so learn about those and use it carefully.

A recent article in the New York Times suggests the idea that lavender has the same effects on mood that Valuim does...without the side effects! Of course those of us who use essential oils have known that for years, but it is nice to get our feet-on-the-ground knowledge validated with science. Now, this scientist is talking about how it works on a mouse's brain, not a human's, but like it or not, our brains aren't all that different! When they finally get around to testing it on humans, I suspect their findings won't change a whole lot. This is what they've found so far:

Lavender doesn't have the dizzying side effects of a sedative, but it works on the same part of the brain that Valium does. It seems to make the mice less anxious and therefore more open to exploring. This doesn't mean you can't overdose. More than one care partner has stopped using lavender because their loved one became more anxious, rather than less so. Like any chemical, the proper dose is important. It is even more important for those living with LBD because they are often super sensitive. A little can be helpful, a little more may be even more helpful but more than that can cause the "adverse" symptoms...the opposite of what you want. It is usually safe to increase the amount until you get a bad reaction. It will end when the chemical leaves the body--within a few hours at the most and usually much quicker.

Lavender enters the brain via the olfactory system (the smell receptors) rather than via the blood stream. (Since it isn't in the blood stream, it will probably be very short acting. This is good as far as sensitivity and adverse reactions go, but it also means that it will need to be continually replenished.) When the scientists blocked the mice's ability to smell, the lavender didn't work. However, we know that with humans, this isn't always true. Alternative therapists say that aromatherapy often works even when a person's sense of smell is damaged because the receptors are still apparently active for the chemical components of the oil, such as lavender, that provide the relief.

Therefore, Marie, just like we've known for centuries, lavender works. But to know if it will work for you, or Dave, is still a trial and error situation. Don't wait for a family gathering to try it out. Take some time with just you and Dave to experiment. But first,
it's also a good idea to discuss the use of lavender or any other essential oils with the physician first as well. Some can conflict with already prescribed drugs. It's also a good idea to discuss how much to use with someone in your community who is knowledgeable about essential oils.

Once you have the doctor's OK, and you have a good idea of how much is "too much," try a small amount and see if it works. If it does, make use of it as a anxiety-reducer and even a pain reliever without the multitude of side effects that drugs have.  If it doesn't, increase the amount in the diffuser, until you do get a benefit, a negative reaction or you've reached the recommended limit to use.

The amount of lavender needed for calming will likely increase in the presence of anxiety triggers such as exciting family gatherings. However, you upper limit may not, so be careful not to go over that limit or Dave could feel worse than he did before!

We wish you, and everyone dealing with dementia happy, calm, comfortable holidays!

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.

Responsive Dementia Care: Fewer Behaviors Fewer Drugs

Our new book, Responsive Dementia Care: Fewer Behaviors Fewer Drugs, is out, just in time for Christmas presents. We are excited about it because we believe that it will be as helpful for dementia care partners as our first book, A Caregivers Guide to Lewy Body Dementia has been. That's saying a lot because the Guide has become a best seller among Lewy body books. It is often recommended by LBD caregiver support group members.

Like the Guide, Responsive Dementia Care: Fewer Behaviors Fewer Drugs is based on careful research and filled with examples of personal experience. Because we know that our readers are likely to be stressed-out caregivers, we use large print. Although it is true that we write for care partners, we believe that professionals will also find the book useful. That's because while our goal is to present information in an easy-to-understand way, we do not forfeit accuracy.

Responsive Dementia Care: Fewer Behaviors Fewer Drugs addresses those difficult-to-manage dementia-related behaviors that show up in all dementias but tend to start early with LBD. This book explains why continuing to react in old, once effective ways not only doesn't work anymore but often makes things worse. It shows how responding by consciously choosing your attitude and actions can decrease these difficult behaviors...and increase the quality of life for everyone involved. It suggests that with a better understanding of how the brain works, attitudes of acceptance and empathy, and some easy-to-learn actions, you can make all the difference.

Dementia experts recommend trying "non-drug remedies" before using behavior management drugs. We certainly support that and the book includes many non-drug suggestions. However, these remedies usually only work if you can connect with the person expressing the behaviors. When they are upset, this can seem like an impossible task. That's when the information in Responsive Dementia Care is most helpful.

With a better understanding of how the brain works, along with use of acceptance, empathy and more effective communication skills, you can often get past their blocks and connect. With both of you on the same page, you will find it much easier to defuse the negative feelings and in turn, decrease the behaviors. Nothing is going to work all the time, but care partners who've tried the suggestions in this book assure us that they work often enough to be worth the effort.

You can find Responsive Dementia Care: Fewer Behaviors Fewer Drugs on Amazon. It is also available on LBDtools.com. In fact, if you hurry, you can get a special "Review" copy for a reduced price. Once you've read the book, we welcome your comments.

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

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.

Holiday Sale!

We just want to remind everyone that our publisher is still  offering that 40% discount PLUS free shipping on our book, A Caregiver's Guide to Lewy Body Dementia. That's only $11.97 instead of the regular price of $19.95 plus shipping.

Click here for a link to our book on their website. Use the code GIFT40 to trigger your discount.

Since all of their books are offered for the same discount, take the time to check out some of their others as well. Although many of their books are written for professionals, they also have some for non-professionals. This link will take you to a list of consumer oriented categories.

About A Caregiver's Guide to Lewy Body Dementia: This has been the care partner's "go-to" book since it was published in 2010. It received the Caregiver Friendly Award in 2012 and has sold over 6000 copies. A basic book about LBD, it is written with the stressed out care partner in mind. Its easy to read style combines lots of personal experiences with the information care partners want to know.

Our newest book, Responsive Dementia Care is also available now in both paperback and e-book format on Amazon. Or order it in a quad package with our other three books from LBDtools.com.

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.

Constipation, Pt. 4: Treatment

In this series of blogs about constipation, we’ve discussed causes, prevention and identifying its presence in someone living with dementia where communication is a problem. This last blog is about treatment. Our friends, Ellen and Ben are back to help us with this.

Once Ellen has indentified that Ben is feeling constipated, she becomes much more diligent about preventative measures, making sure Ben eats lots of fiber, drinks adequate fluids and gets plenty of exercise.

In addition, she increases his preventative laxatives. He normally takes a mild osmotic laxative every other day and a stool softener every other evening. She increases this to once a day for both. Remember, each person is different. Others may need even more, or less. These laxatives are gentle enough that you can experiment with them without much fear of them being harmful. However, they should never be used without consulting the doctor first. The doctor should approve of the dosage change when constipation is suspected as well.

If Ellen catches the constipation early, this may be all she needs to do. However, if she misses the first signs and the bowel may become impacted. That is, the stool hardens and plugs up the bowel so that nothing, or very little can pass. Ben’s body simply can’t function properly when this happens and so it is quite serious, and often extremely painful. Symptoms of impaction are similar to those of constipation only stronger:

• Severe bloating
• Abdominal pain, often severe
• Nausea and vomiting
• Headaches.

In addition, there may be what seems to be mild diarrhea. Actually, this is the small amount of stool that is seeping out from around the blockage.

Enemas and suppositories can sometimes help, but Ben, like many people living with dementia, can’t hold the enema or the suppository in long enough to do much good. Partly this is due to poor muscle control and partly it is due to his inability to understand why he should do so in the first place.

It is sometimes possible to put on a glove and try to dig out an impaction if it is low in the colon. This requires a knowledgeable “nurse” and a compliant “patient” because the inner tissues of one’s rectum are easily torn. Ellen was once a caregiver in a nursing home and so she knows how to do this and Ben is willing to lie still and let her try this.

If Ellen’s excavation efforts don’t work, her next course of action is to take Ben to the ER, where the nurses are skilled at dealing with this problem and have more resources at hand for doing so than she does at home. In fact, once an impaction is suspected, an immediate ER visit is likely the best course of action for most people. You want this painful, possibly deadly condition dealt with as quickly as possible.

Once the impaction has been broken up and evacuated, expect more diarrhea. This is the stool that has been backed up above the impaction. Once it is out, the bowel can return to normal functioning. That’s when Ellen returns Ben to his preventative dosages of laxatives.

For even more information click here for a very through article by Alzheimer Scotland.

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.

Have a Happy--Stress-Free--Thanksgiving

Like many of you, we will be traveling to visit family this Thanksgiving. Therefore, this blog will be short an sweet. We'd just like to remind you of some of the things that help both you and your loved one enjoy family gatherings even when Lewy is present. Your primary job is to help your loved one be comfortable as possible, thus decreasing the likelihood of behaviors and increases their ability to be present. Family gatherings seldom meet this criteria, what with the excitement, chatter and general chaos that happens when such a group gathers, even though the members involved may all be well-loved.

Remember these facts:

• A person living with dementia is most comfortable in a familiar place, with only a few people at a time, with very little excitement, and with as few surprises as possible.
• Visitors, even well-loved ones, in the home usually leads to extra work for an already overburdened care partner. 

Plan ahead. Talk to family members and friends with whom you want to spend this holiday. Make sure they know your needs and limitations. Location: Your loved one will be most comfortable at home. Second choice is someone else's home that also familiar. Third choice is an equally familiar restaurant. (If the gathering will be at your home, ask for help getting ready...cleaning house, etc. You already have a full-time job and your family probably will be glad to step in and help.)
Sanctuary space. Set aside a room or corner where your loved one can go to find peace and quiet, away from too much excitement or too many people. You might even opt for them to simply stay there and invite family/friends to visit a few at a time. Don't forget your own needs! Large groups can be stressful for anyone who is already stressed (read: most dementia care partners!). Use this or another room as a place where you can escape to and rest a bit now and then during the day. Make sure your family understands these needs and supports them.
People: Ideally, you would invite a few people at a time to visit but this isn't very practical for a holiday gathering. Instead, enjoy the whole bunch but explain your loved one's need for less stimulation. Invite them to visit the sanctuary room for quality time with your loved one, one or two at a time.
Food: Leave most of the cooking to others. If it is at your home, make the meal potluck. If not, bring something easy to fix...or store bought.

Thanksgiving is a time for thinking of all the things and people we have to be grateful for. It is also a time to gather as families and friends. We hope you do lots of both!

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.

Constipation, Pt. 3: Identification

This series of blogs are about constipation. The first discussed its causes and risk factors and how they can combine to make constipation an even worse problem. The second blog identified prevention as the first line of defense and discusses a variety of ways to decrease the risk of constipation. This blog is about ways to identify its presence even when the person living with dementia is unable to do more than know that they hurt or feel uncomfortable.

Jim has graciously allowed me to use his ongoing issues with constipation as examples in the previous blogs. However, we have an advantage that dementia care partners often don’t have. Jim doesn’t have dementia. He can use abstract thinking to identify early symptoms, compare them with previous experiences and come up with some valid conclusions about what is going on. Then, with the help of his own private nurse (me!), he can make conscious choices about how to deal with these symptoms. Finally, he can follow through even when the treatment is uncomfortable, bothersome or annoying because he is able understand that what he is doing is going to help him in the long run. These are all things that our friend, Ben, can seldom if ever do.

Ben has dementia. With his limited abstract thinking, he can seldom compare or make conscious choices. He lives in the present, with little thought of the future and only his residual feelings reminding him of the past. Since the strongest of these feelings are usually negative, they are seldom helpful. Jim can say, “I feel bloated,” and recognize that as an early constipation symptom. Ben just feels uncomfortable but probably can’t recognize why. Nor is he able to compare this uncomfortable feeling with past feelings and recognize it as “bloating” or as a warning sign of impending constipation.

Jim can say, “I have the same kind of abdominal pain I have had in the past when I was constipated.” Ben, who used to be a great conversationalist, doesn’t talk much anymore, but he can tell his wife, Ellen, that “I hurt,” or “I feel bad” although he can seldom explain how or where. More often, he simply strikes out at the discomfort with angry behaviors directed towards Ellen, whom he identifies as the source for all that happens to him, good or bad.

Naturally, Ellen prefers to deal with the constipation before the behavior starts if possible. To this end, she:

• Uses a calendar hanging inside their bathroom cupboard to check off when Ben moves his bowels. Thus, she can catch a change in his normal routine quickly and act before it becomes serious.
• Is especially alert during those times when constipation is most likely to occur such as during travel, when routines get messed up and in warm weather when the body needs more fluid.

If Ben does become constipated, he probably won’t be able to tell Ellen. But she has become an expert at playing detective and watching for non-verbal cues such as:

• Moaning and groaning and the cradling of his abdominal area.
• The sudden appearance of dementia symptoms such as hallucinations, agitation, mania, agitation, verbal or physical violence, nonsensical talking, active dreams or delusions. With Ben, she knows that his active dreams usually get worse when he starts feeling constipated, or when he has a UTI, another “hidden” complication, which can cause abdominal pain and acting out behaviors.
• A sudden increase of already present dementia symptoms. Ben had regular hallucinations but they are usually benign. When they start getting scarier, Ellen starts looking for a physical problem.

Next, Ellen has to do some sorting out. Like most people living with dementia, urinary tract infections (UTIs) are also very common causes of acting out behaviors. Therefore, if there are no changes in his bathroom routine, Ellen’s first guess is a UTI. She acts on that, getting a urine test and going from there. If there are changes in his bathroom routine, or if the UTI has been ruled out, Ellen moves on to look for signs of constipation:

• Does his abdomen look bloated?
• Is he holding his head or showing in other ways that his head hurts? Usually headaches and nausea don’t occur until the constipation is so serious that there may be an impaction. However, Ellen has learned to pay attention to when Ben complains of a headache, or starts showing non-verbal signs of one. With him the headaches can come early, while he is still no more than a little bloated. Every person is different and each care partner soon learns what their loved one’s danger signals are.
• Does he flinch or pull away when she gently touches various areas of his abdomen. She asks “Does it hurt here?” “Here?” or “Here?” but she depends more on his non-verbal signs of distress to tell her where it hurts most.
• Has he lost his appetite? If Ben is feeling bloated, he may not be hungry at times when he’d normally be eager to eat or he might reject food he usually loves.
• Does he act like he wants to throw up, or is he actually vomiting? Like headaches, nausea usually doesn’t occur until the constipation is so serious that there may be an impaction. Therefore, if he is exhibiting these signs, Ellen needs to be seriously concerned and might consider an ER visit.

The final blog in this series is about what to do when constipation occurs. It will be published on Nov. 23, two weeks from now. Next week's blog is about preparing for the Thanksgiving holiday.

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.

Constipation, Pt 2: Prevention

The last blog was about being aware that constipation is not just a condition of dementia but can be caused by other conditions as well. I used Jim’s history of Crohn’s disease as an example but named others such as diabetes as well. However, constipation, even without the complication of anything else can be very serious.

Therefore, the best solution is to prevent the constipation in the first place.
To help prevent constipation,

Avoid refined grains, including white rice, and choose whole grains, especially bran, instead.
Avoid processed foods, including pasta (which Jim loves!) and choose fresh and cooked vegetables (which Jim isn’t as fond of!) instead. These high-fiber foods foster digestion by drawing fluid into the intestinal tract. Warning: if like Jim, Crohn’s is an issue, fiber that is too rough can be problematic. He still adds fiber but avoids foods like popcorn with its rough husks.
Avoid greasy fast foods like burgers and fries. Fatty foods and proteins are low in fiber and take longer to digest. It isn’t so much that they cause constipation as that they take the place of foods that prevent it. Choose nuts, beans and fish instead. If you have a problem getting enough fiber in your loved one’s diet naturally, consider a fiber supplement such as Metamucil or FiberCon.
Avoid processed (white) sugar and bakery items like cookies and cakes. Most people living with dementia love sweets and so avoiding these is often difficult—especially when they make such great bribes! However, these items are triple constipation risks: they are low in fiber, low in fluid and high in fat. Choose fruits instead.

Avoid green bananas but choose ripe bananas. Green bananas are constipating, but ripe ones are great sources of fiber. This is actually true for most fruit although it is especially strong with bananas. Dried fruit make great snacks and have even more fiber than fresh fruit. However, they also have more calories. Remember that old saying about an apple a day keeping the doctor away? You didn’t know they were talking about constipation, did you?

Avoid cheese and ice cream. Choose yogurt and fruit sherbets instead. (Most dairy products are constipating, but yogurt is fermented and has those healthy probiotics.) Also consider fermented foods, such as sauerkraut, kimchi, and miso, all of which contain healthy bacteria and probiotics that assist with digestion. Consider adding a daily probiotic supplement as well.

Avoid cold drinks, including water. Choose warm water instead. Drinking a glassful every morning activates digestion, helps to avoid indigestion and stimulates blood flow. This was a big issue for Jim. He felt good that he was finally drinking more water and then I suggested that he drink WARM water…something he had considered unpalatable in the past. Like a good patient, he manned up and now he drinks it regularly, at least when constipation threatens, although he still doesn’t enjoy it.

Coffee is a stimulant and can foster the digestive process. However, it is also a diuretic which can decrease fluids. Don’t avoid, but drink only a limited amount.

In addition, be sure to exercise regularly and drink water all day long. As we said in the last blog, these two especially can both be issues for summer travelers like us.

Help your loved one to set up a bathroom routine, where you encourage them to move their bowels at the same time of the day, every day. Be especially alert when this routine is broken, as it often is with travel.

Consider a daily routine of a combination of an osmatic laxative, such as Miralax, milk of magnesia or Citroma and stool softeners. The osmatics soften the stool by drawing fluid into the colon from nearby tissue and the stool softeners draw fluid already in the colon into the stool to soften it further. What works for each person varies. Some people need to take both every day. Jim learned that a daily dose of these could lead to diarrhea for him, but that using just the osmatics every other day kept him regular most of the time. Like Jim, you will probably have to learn by experimenting. However, check with the doctor before you start. These laxatives are mild, but they are still drugs and may conflict with something else your loved one is taking.

The next blog is about how to identify the presence of constipation is present in a person with a limited ability to recognize why they are uncomfortable or to communicate this easily to their care partner.

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.

Constipation, Pt. 1: Causes

Constipation is a big issue with dementia, especially LBD, where a compromised autonomic nervous system can slow down the whole digestion process. In fact, it is often one of the first symptoms that care partners remember, looking back. Of course, they didn’t connect it with LBD at that time. This was the case with Jim’s first wife, Annie. She had chronic constipation for years before she had any cognitive evidence of dementia. In fact, it was so bad that she chose to have an elective surgical procedure to improve it.

If she and Jim had known what he knows now, they would never have Bene that. But back in the late 1990’s very little was known about LBD and neither they nor any of their doctors thought to connect constipation with dementia. Nor did they consider the risk of surgery for someone who was already exhibiting more than one symptom that we know now warns of LBD: her constipation and active dreams—and age, which is the most common risk factor of all. It was after that surgery that she started having hallucinations and Jim took over the cooking after one too many “burnt offerings.” Once a skilled cook, Annie was no longer safe around a stove.

In Annie’s case, dementia wasn’t even considered as the cause of her constipation. But issues with identifying a cause can be the reverse too. Once dementia is known to be present, it is all too easy to blame it for any problem that comes up, including constipation—and often you’d be right. However, as a substance-abuse nurse, I learned that “an alcoholic has the right to any disease known to man.” This applies to dementia too. There are many other causes of constipation besides dementia. Crohn’s disease, for example.

Fast forward twenty years, and Jim is now the one experiencing bouts of constipation. Although he doesn’t have dementia, he is well past 60 and age is the biggest risk factor for constipation. However, in his case, we think first of Crohn’s disease. He hasn’t had a bout of Crohn’s for a couple of years, but we still worry. This disease, sometimes called ‘arthritis of the intestine” inflames the bowel lining and shrinks its working space, making constipation a constant threat. We know that even if it isn’t involved yet, it might be if we don’t get the constipation under control.

There are many other conditions besides age and Crohn’s that increase constipation risks. I’ve already mentioned LBD. It and other Lewy body diseases like Parkinson’s impair the nerves that control the muscles in the bowel and make them less effective. So do other neurological problems such as multiple sclerosis and stroke (common with vascular dementia). Hypo-thryoidism, or an underactive thyroid gland, decreases hydration and fosters constipation. So does diabetes, very common with seniors in general and especially common with Alzheimer’s. Depression, especially common with LBD and often present in other dementias, can slow down everything, including the GI tract.

Lifestyle can also be a risk factor. The body requires exercise and adequate fluids to function properly and fiber to foster digestion. In our travels, exercise is sometimes limited, and not just when we are traveling from one spot to another. We’ve been in both very warm and very chilly areas. Both make it tempting to stay in our comfortable RV instead of getting out and exercising. Lack of exercise is also often an issue for a person living with dementia, especially if mobility is already a problem. Hydration can be too. Jim has had to learn to drink more water, something he never did as a younger man. This becomes especially important during warm weather. Our bodies need more then. We aren't as careful about what we eat when we travel either, making do with things like fast foods that seldom have much fiber.

Certain medications can also be constipating: sedatives, narcotics, certain antidepressants and those that lower blood pressure. Since many people living with dementia often take these drugs, a care partner needs to be aware of this and be alert for early signs of constipation. Better yet, work with the prescribing physician to use drugs that have less constipation risk…or find an alternative non-drug method of treatment.

OK, so now we know a little about the causes, but what care partners really want to know is how to prevent, identify and treat constipation. Keep tuned. That’s what the next blogs will be about.

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

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.

LBDA and Whitworth History, Pt 3

This is the third in a series about the early history of the LBDA and our involvement in it and in the spreading of the word about LBD in general.

The first few years, the organization was loosely based in Arizona, with a mailbox in Tempe, a university town the group thought would give them veracity. However, it was really national, with members spread out from coast to coast. They met monthly via group phone calls and face-to-face meetings held every six months in a variety of places from Florida to Arizona and from New York to Georgia. Eventually, it found a permanent home in Georgia, which the group decided was closer to research centers than the Arizona location.

There were a few mistakes. One was when, in an effort to save money, the group bought thousands of fliers. The idea was sound, except that the group was growing and and information about LBD was also growing. Within a year or so, the fliers were replaced with a new, more up-to-date version, leaving hundreds (thousands?) still sitting in boxes in Jim's spare room in Arizona. They were still there when we married. I had family coming to visit but there was no room for a bed. We solved that by buying a twin mattress and laying it on the boxes. That's where the fliers lived until we finally recycled them a few years later.

When Jim's six years on the LBDA board were up, I gave up from my job as Volunteer Coordinator too. We still supported the organization and believed passionately in its cause, but it was time for others to take over. My post-retirement dream had been to travel in an RV and teach--something, I didn't really care what. I now believed that this might be possible.

Jim wasn't keen on RVing. He had enjoyed it with Annie but considered it a "been there, done that" thing. However when we included teaching about LBD into the mix, he stepped right up. We bought an RV and we've been traveling up and down the west coast spreading the word about LBD ever since. (Update: After about 12 years of RVing, we are selling our motor home. Age is catching up with us and it just isn't as fun anymore.)

By 2009, we'd started writing books. There still was very little out there about LBD and of that, even less for caregivers. I'm the writer, and he's the detail person, "Mr. Eagle Eyes," they called him at the LBDA. We are on our fourth LBD-related book now. Our most popular one, A Caregiver's Guide to Lewy Body Dementia, was published in 2010 and it is still considered the main go-to book for LBD caregivers. We are so honored to have been able to do so much good!

We have great hopes for our latest book, Responsive Dementia Care, which is directed towards dealing with the dementia-related behaviors that often show up so early with LBD--and doing so with fewer drugs. Watch for it. It will be on our websites and on Amazon soon!

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.

LBDA History, From a Founder's View, Pt 2

Last week, the blog was about the beginning of the LBDA and Jim's involvement in it. This week is about how I got involved.

In 2004, Jim moved to Arizona to be closer to the LBDA "headquarters," presently only a post office box in Tempe, but they had hopes for more eventually. The organization was finally getting its nonprofit status and donations were coming in. The hope was that soon they could have a real office and some staff to fill it. In the meantime, the board members continued to work out of their homes and meet mostly via phone.

The organization had grown and now offered several support groups and a telephone support line. As one of the first telephone responders, Jim spent hours sitting at his desk listening to LBD caregivers and giving them support. A great listener, he was in his element. He found that just listening was what most of his callers needed. That and a little info, of course. Accurate information about LBD was still not easy to find.

In early 2005, Jim had been single for almost two years. Long retired and in a new community away from family and old friends, he was feeling lonely. He and Annie had enjoyed square dancing and so he signed up for a refresher class. My late husband and I had been square dancers too and that same winter, I also signed up for refresher classes--in Washington. However, I was a snowbird...I spent my winters in Arizona. I found a class there at about the same level--the same one Jim was in! The instructor put us together and we've been together ever since.

Jim was pretty shy but I found that I could get him to talk if I asked questions about LBD. Spreading the word about LBD was still his passion. Although I was a nurse, and even cared for my sister who had Parkinson's, I'd never heard of Lewy bodies or Lewy body dementia. By the time I'd known Jim for a few months, I knew a lot! But even after we were married, I saw it as his mission, not mine. I went along as his support, if I went at all.

I did accompany Jim to Washington D.C. when the LBDA board met there. I knew it might be my one chance to visit nation's capitol. By then, Angela Taylor, who is still active with the LBDA, had taken over as President. I made the mistake of observing to her that the group's handling of volunteers was poor. Like the good President that she was, she replied by suggesting that I take on the Volunteer Coordinator job. I did, and with that, Jim's mission became mine! In fact, I had the honor of being chosen as the LBDA's 2007 Volunteer of the Year.

By the time Jim's six year term on the board was over, the small group of seven working out of their homes had grown into an organization based in Georgia, with several paid staff and around a hundred support groups throughout the nation and Canada. Our mission remained the same: to spread the word about Lewy body dementia, although research became important too. We all would like to find a way to end this baffling disorder!

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.

LBDA History from a Founder's Perspective

October is LBD Awareness month. This year is also the LBDA's 15th anniversary. That's why we are taking this time to share a little history about the LBDA, how it was started and how both Jim and I became involved. For Jim, it started much earlier than 15 years ago--more like 20 or even more.

Jim and Annie had a full life. True, Annie had had chronic constipation for years and years. And true, she'd had Active Dreams, where she even tried to beat up Jim in her sleep. They laughed about it. Nothing to worry about, you know. And none of that stopped them from enjoying life. They square danced, traveled, enjoyed their grown children and their grandchildren. But then, Annie could no longer remember the dance steps. She got nervous when they traveled. And she started accusing her daughter of things that just weren't true.

Annie was developing Lewy body dementia, but this was the late 1990's and no one knew much about it. Not their family doctor. He just told Annie it was a normal part of aging. Not the specialist Annie eventually saw. "Alzheimer's," he said. But Jim knew differently. Annie's symptoms just didn't fit. They did fit this thing he found on the internet called "Lewy body disease." But the doctor just shrugged. "Never heard of it," he said and continued to treat Annie for Alzheimer's...with drugs that we know now that people with LBD are especially sensitive to. Actually, they aren't even recommended for people with Alzheimer's now!

Because of this, Annie was medicated with drugs that caused her to be hospitalized. Then, because the hospital staff did not know that a person with LBD could be much more mobile at some times than others, Annie woke up from being almost comatose to find bed rails keeping her from getting up to go to the bathroom. Always resourceful, she climbed over the foot of her hospital bed. She experienced her usual low blood pressure when she stood up and fell, puncturing her lung. She died a few weeks later, in March of 2003.

Even before Annie passed away, Jim discovered an online LBD caregiver support group, filled with people having similar problems to his as they attempted to care for loved ones with LBD. One of them, Imelda Fagen, started a website, called "Lewy Body Disease.com" which eventually became LBDA.com. People began donating money via the website, which Imelda passed on to various places dealing with LBD, such as hospitals or research centers. The group began to recognize that they needed to incorporate. Then they could use the money for their own goals.

In July of 2003, Jim, now a surviving LBD spouse living in CA, met with four women from the online group in LaCross WI and did just that. What to name their new organization was an issue that resulted in lengthy discussion. The Lewy Body Dementia Association was finally decided upon. Since Lewy bodies were involved in other diseases and disorders, these two words were discarded in favor of the more specific "Dementia." (This has continued to be an issue. "Dementia" has such negative connotations that many wish the group had chosen otherwise, as the Alzheimer's group did!)

• Jim Whitworth was elected President and served his full 6 year term, the first two as President and the rest as a Director. "I was the only man and the women ganged up on me," he said."
• Elizabeth Wittenberg, of Shelton WA, was elected Vice President but soon found that she couldn't do her part and care for her mother too. 
•  Peggy Smith (SC) was elected Secretary/Treasurer and was active with the group for several years. Peggy's investment in the LBDA was perhaps the greatest of the five founding members. Her mother and at least one other female family member had LBD. 
• Imelda Fagan (NY), whose husband had LBD became a Director. (The same Imelda Fagan, who had the website.)
• Jan Childress (CA), whose father had LBD and later, whose mother developed Alzheimer's, was another Director. 

 The day after the group was incorporated,

• Donna Rae (MI), whose mother had LBD, joined the group as a Director. 
• John Young (TX) whose wife had LBD, also became a Director. He eventually became the group's third President. His wife was one of the few loved ones we all got to meet because he often brought her with him to the meetings. 

Next week, how Helen got involved in the LBDA and what the Whitworths went on to do.

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.

Reminiscing, Part 2

The previous blog was about using general conversation, writing and music to help a loved one reminisce. The process in itself adds entertainment and quality of life for your loved one and likely for you too. When you view this as a contribution to family history by taking careful notes, you also add a sense of usefulness that dementia steals away all too often. This week is about a few other ways you can help a loved one remember events and activities in their past.

Use art. Try having an art-fest with your loved one. Use crayons, or even better, water-soluble (and ingestible paints) and big sheets of paper. It’s great for getting out feelings and the artwork will usually trigger memories that your loved one can share. Never aim for perfection. Expression, and memory-triggering are the goals, along with the fun of doing something together.

Use writing. If you loved one can still write, ask them to write out stories about things they remember. The sooner you can do this the better because writing is often one of the first abilities to go. My mother wrote out a story about how in her twenties, she lived on an isolated wheat ranch and made of pet of a magpie. I really value this story and I’ve used it in our family history. My aunt spouted poetry all the time instead of telling stories and I asked her to write her poems out, which she did. I think of her every time I read them…or hear one of the poems somewhere else. As with music, being a good writer isn’t the goal. Getting the stories down on paper or tape is. Have fun doing it!

Use quilts or other objects/activities. Many older women have quilts made with fabric from old dresses or other memory-triggering clothing. As with the photos, ask a few questions to get them going and then let them take the lead. If not quilts, look for something that the person has done. My brother-in-law worked with electronics his whole career, and did amazing work. He loved to talk Jim about electronics even after his dementia-dulled thinking no longer allowed him to do the work.

The final step is to make use of all the information you glean from your loved one. Put their stories together in some kind of notebook or digital album, along with those photos of now-named people. Even after your loved one can no longer tell you stories, identify photos or sing, they will enjoy looking at the albums, hearing you read the stories and singing to them. Enjoy!

While your main objective is to provide enjoyment and quality of life for your loved one, don’t discount the value of documentation. At our recent reunion, one family member brought a blown glass pitcher that had belonged to my grandmother. After she died, almost 100 years ago, the pitcher passed on to my father. He may have told my niece what he knew about his mother’s pitcher but now my niece is gone too. Neither she nor my father left behind any information about it—except for who it had belonged to. While none of these people had dementia, both my father and niece died early. Was it something my grandmother brought with her on her train-trek from Vermont to Nevada? Was it a later gift sent from her Eastern relatives? Or was it a prize purchase she found in a Western store? We’ll never know. Make an effort to get stories written down about special items before it is too late. Your younger relatives will thank you years later!

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.

Reminiscing

We just attended a family reunion and so I’m thinking a lot about family connections. One of our favorite things to do is to listen to my 96 year-old brother tell us about earlier times. He is cognitively healthy, but even those with dementia can often share experiences from the past. They may not be able to remember recent events, but they can often remember more distant ones. Take advantage of this to document family history. Your loved one will enjoy the chance to reminisce and you will learn things about your family that you can pass on to your younger relatives.

No matter how you go about reminiscing, do take notes. If you feel uncomfortable writing, or if they feel uncomfortable with you doing so, consider a tape recorder. Actually, most cell phones have the ability to record now. Set the recorder up within easy hearing distance and in a few moments, both of you will have forgotten it. You can also video, but that is more intrusive, and harder to ignore.

Start a conversation about the past. Once your loved one has started talking, avoid interrupting as much as you can. For example, only ask questions that keep them talking. Be careful about asking clarifying questions because they interrupt the flow of memory and may cause even more confusion. Just relax and find someone else to quiz later. A note here. Dementia often causes times to be confused. In her nineties, my mother used to tell me stories about when she was a child…but she’d have people from the present, such as my brother, in the story as well. Don’t try to correct. The goal is to provide your loved one with an enjoyable time, and the two of you of a fun time together. The stories you get are bonuses!

Use photos. A wonderful way to get anyone to talk is to bring out the family album…or often that overflowing box of unfiled photos. Ask your loved one to tell you if they recognize anyone in the photos. If they do, they will often tell you something about the person as well. Keep your notebook handy! Again, once they start telling a story, avoid interrupting. Don’t worry if they get off track, or if like my mom, they get mixed up. As long as they are sharing memories with you, it’s good. The upside is that your loved one may put a name to some of those until now, unknown people in your photos. Most of your newer photos are computerized. If you are like me, you’ve uploaded most of your old ones as well. Consider making a special file of the photos that would be of most interest to your loved one. That way you won’t confuse them with unwanted photos flashing by as you look for one you want to talk about.

Use music. For this to be effective, you need to know what kind of music you loved one likes. Play the music and ask them to tell you about it. To get them started ask questions like what kinds of activities did they do when that music was popular, or what does a song mean to them. Have the words to the songs available and sing along with your loved one. It doesn’t matter if you can sing or not…or if they can, for that matter. The goal is to have fun with the music. Don’t neglect rhythm. Some people are more into rhythm than they are melody. Clap, tap your feet, even dance with them. My mother couldn’t carry a tune but she loved to sing and dance. Even when she was in a wheelchair and couldn’t recognize her grandchildren, we danced. It was a time both of us valued.

The next blog will be about other ways you can work with your loved one to help them to reminisce while adding to your own family history.

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.

Dementia Risks made Personal

August is a celebration month for us in many ways. Both our birthdays are in August. So is our anniversary. Besides these, we are usually traveling in our RV and meeting up with friends and family that we don’t get to see the rest of the year. All of these things are fun for us. We still enjoy the excitement of celebrating holidays, the variety of being on the road and the crowds that we often encounter. We don’t enjoy so much the challenges that RVing often brings…the flat tire, the refrigerator or furnace that quits working, etc. But we can cope and get on with our lives.

However, we know that if one of us had dementia, that wouldn’t be the case. Too much excitement would bring on difficult behaviors. So would too many people. And the number of people who make up a “crowd” shrinks from many to as few as three or four. There’s also the possible frustration and pain of finding that you or your loved one no longer recognizes a dear relative that you haven’t seen for a while. As for variety and the challenges, anything that deviates from the norm is too much challenge, and no longer fun or even practical. Once enjoyable travel becomes an unwelcome effort and it is better to stay home and invite friends and relatives to come visit you, a few at a time. Dementia doesn’t stop a couple from enjoying life, but it definitely requires you to make changes in the way you go about it.

Our birthdays remind us that we are both at risk for dementia. Age is a major factor, and we are both well past 70. We do have other age-related issues, and some of these are also risk factors for dementia. However, although we are super aware of the possibility, our occasional lapses in memory don’t yet add up to dementia. (Click here for a great Teepa SnowYoutube video about the difference between this and true dementia.)

Our anniversary reminds us that in general, couples are happier and healthier than their single counterparts. We also do better if we do come down with an illness, including dementia, due to our built-in support person, advocate and caregiver. Sometimes, such as when Jim and I have a disagreement, I think back to simpler times when I had only myself to please. I’m sure Jim does the same. But really, they weren’t that simple. I also had no one else handy to share my joys and disappointments with. It just isn’t the same when you have to go outside your home to do this, no matter how supportive your relatives and friends are. We both celebrate our anniversary with gratitude.

Our meetings with family and friends remind us how important it is to maintain a social life. Being on the road as much as we are in the summer, that can be difficult. But again, we know that staying in contact with other people is a key component to staying healthy. Even if one of us did have dementia, that would be true. It is so easy to become isolated when you don’t feel good, or when your dementia begins to make you feel uncomfortable with others or when you, as the caregiver, begin to feel overwhelmed, or find that your interests have changed. This can be especially true if you allow this ever so common illness cause you embarrassment or shame. Being proactive and talking about the issues around dementia works a lot better than trying to hide it—for both the person living with dementia and their care partner.

Traveling in our RV also makes us very aware of the age-related issues around driving. We know that the time will come when we will have to stop taking our truck-sized vehicle out on the road—that it will eventually be time to find other ways to travel, or to stay home. So far, we do well, and we haven’t had any scares. Jim likes to drive and does it well. Even so, we know this can’t last forever. We hope that when the time comes, we can let go gracefully without the wake-up call of an accident or near-accident that many have before they can accept that it is time for a change.

But in the meantime, viva la travel!

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.

Making Conscious Choices

We’ve been teaching about dementia for many years. Over time, I’ve come to notice that “normal” people find it almost as difficult to change their minds as does a person with dementia. The difference, of course, is that we have a choice and those with dementia don’t. But how often do we exercise that choice.

For example, we talk a lot about how a person with dementia CAN’T change their mind, once it’s made up because their ability to think abstractly is limited. We can, but how often do we make that effort? Think about the last time you disagreed with someone. Did you consciously use your abstract thinking ability to evaluate their view and consider how it might be right, or even partly right? Or did you respond almost automatically, with your own pre-determined view? If you chose the latter, you aren’t alone. Most people do. They make a decision and stick with it even when new information makes it less accurate. Humans tend to do things the easiest way. Conscious thinking takes effort and the willingness to accept that we might be wrong. The stronger our beliefs, the harder it is to change them.

I often think of a “fact” I learned in college in Alaska. In my Alaskan history class, I learned how people emigrated from Asia to Alaska over the Bering Sea land bridge during the ice age, and then filtered south. Recent discoveries have made that theory very questionable. Even so, it is still the theory that most resonates with me. Now this doesn’t affect my life. However, it does make me think about other beliefs I might have that are more personal. What about the religious and political beliefs that I have developed over time? How often do I question them to see if they are still relevant? How often do you?

Care partners of people living with dementia are challenged to make these determinations all the time. You learn to put aside your own beliefs about what is true and what isn’t and go with your loved one’s views at least enough to let them feel heard and affirmed. But how often do you do this with others?

This time I think of a cousin that I grew up with. We have very different religious beliefs but we can still talk about them. Neither expects the other to “convert” but we are able to consciously use our abstract thinking ability to share and look for value in each other’s ideas. This isn't something we do casually. It takes time, patience, empathy and acceptance as well as a healthy curiosity but the result is a special closeness that we otherwise wouldn't get to feel.

You may think that this blog isn’t about dementia care. It isn’t. It’s about self-care. It’s about choosing to exercise your ability to think abstractly, to listen and consider before rejecting a new or conflicting idea. Remember the old adage: “Use it or lose it.” The less you make conscious use of this ability to make conscious choices, the more rigid in your thinking you will become, making it almost as difficult for you to deal with change in any form as it is for your loved one.

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.

Roadside Lessons

Clatter, clatter, clatter. Not what we want to hear as we drive or RV from one campsite to another. We stop get out to find our exhaust pipe on the ground, run over by one of our rear tires.  We were miles from any town. A service station and a huge flea market barn are the only buildings in sight. Jim drives the RV, with the pipe dragging underneath and the tire shredded, to the service station. At least, we aren’t parked right on the road.

My call for roadside aid adds to the stress as I try to navigate through a forest of automated choices and long waits only to find that the real person I finally reach is the wrong one. I’m sure that normally, I’d have had no trouble with their system, but now I feel as though they are intentionally trying to make a difficult situation worse. After going through their complicated process several times, I talk to three different people, telling my whole story and over each time, before I reach one who seems to know her business. She tells me if they can find a tow truck big enough to tow a 20,000 pound RV, we’ll likely have to have it stored since it is Saturday and the repair shops aren’t open. And that cost of the tow will be well over what our insurance pays because we are in nowhere land, repair-shop-wise.

We count up the likely expenses as we wait for her to find a tow-truck. They finally put us in contact with a tow company but it will be a while before they can come out. Stress is going up for both of us. How are we going to handle this? Where will we stay if the RV is stored? How will we stretch our budget to pay for the extra cost of the tow? The questions just keep on coming. We are on our own. There isn’t anyone to call for help, except for the insurance people, of course. And we are independent. We prefer not to ask for help anyway. When I worry, I get irritable. And when Jim gets upset, he quits talking. It’s a good thing. Likely, anything he’d say would have set me off. Not the way to support each other, and we both know it, but stress is ruling.

The wait seemed to be taking forever and so I decide to go visit the flea market. A sign offering RV storage prompts me to ask if they have room to store the RV for the weekend.

“Sure,” they say. That part is easy—a business exchange. The hard part is being willing to let go of doing it all—even when I know we can’t.

I take a deep breath and say, “What I really need is someone to crawl under the RV and see what needs to be done so we can move it here.” Then I explain about the exhaust pipe. Years ago, Jim would have done it but those days are over.

They don’t hesitate. “Glad to help,” they say. “And of course, you can stay in your RV in our yard as long as you need to. Oh, and here’s an electric outlet for you to plug into!” Once again, I am reminded how most people love to help. You just have to ask! Quickly I call the tow company and cancel the tow request. It was just in time. The truck was already on its way!

By Monday, with our new friends’ help and advice, we have figured out how to get the RV repaired without having it towed. None of this would have happened if I hadn’t been willing to let go of my stressed out, we have to do it all feeling and ask for help! We are still dealing with the results of the accident but it hasn’t been nearly as expensive as it could have been. And we met some wonderful people!

OK, we aren’t caregivers, but the moral of this story is that anyone can become so stressed that they don’t think clearly. That is, anyone can start exhibiting stress-related dementia symptoms, including people like us who teach about that very thing! But thankfully, I was able to reach out and ask for help. And you can too. Even when you are feeling overly stressed you can do this. Of course, it helps to know who to ask. It pays to plan ahead and have a list of possible helpers handy. You won’t always be lucky enough to have your incident right next to the very help you need.

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.

When They Don't Remember

Today’s blog is about what happens when a Person living with dementia (Person for short) can no longer recognize family. Care partners sometimes think they are no longer needed. Even in a facility where there is a good staff-resident ratio, the family care partner is a vital team member.

The memory care facility where I volunteer has a nice comfortable 5 residents per staff. (This is exceptionally low. The ration is often 8-1. HW) When staffer’s caseload is made up of mobile and continent residents, this works well. But the next day, the staffer’s caseload may be made up of four incontinent residents with one in a wheel-chair. Then, the staffer just can’t give the residents great care. Likewise, flu can make all five residents sick and incontinent. Families of residents need to show up often enough to be available and able to help in such situations and to advocate for changes if they are needed. -- Connie

Family can find it painful to visit a loved one who no longer remembers them, but it remains highly important. A resident who had regular family visits will almost always get better care.

That’s the physical reason families should continue to visit. There’s an equally strong emotional reason too.

My mother-in-law’s memory has failed. She still loves ice cream and so we usually bring her a cone and sit with her while she eats it. But then my husband, Randy, wants to leave. She usually recognizes him but she keeps asking the same questions over and over. He says, “If she can’t remember from one minute to the next, she surly can’t remember that I was here even a few minutes after I’ve left. What good does it do to go?” -- Sue

What Randy isn’t aware of, and what many truly caring, but frustrated, care partners don’t realize is that there is a difference between physical memory and emotional memory. True, Randy’s mom may not remember he’s been there, she will remember the emotions she experienced during his visit.  That’s why it is so important to help her experience as many positive emotions as possible.

Here are some suggestions for Randy:

Use patience. Yes, she will say the same thing over and over, but your ATTITUDE is what counts. Although the words don’t last, the feelings do. So focus on that instead of being impatient with having to say the same thing over and over. Think of your words as vehicles for transporting positive feelings from you to her.

Use touch. Just sit and hold her hand. Give her lots of hugs. Hugs when you arrive, hugs when you leave. If she is comfortable with you doing so, sit close enough to sling your arm around her shoulder. Touch travels to the brain via a different pathway than words do and it lasts longer too. Gentle, non-custodial (voluntary) touching also imparts caring and love.

Use music. Like touch, this is another pathway and it will last longer than words. You may find that it will actually help her to think more clearly and remember a little longer as well. Music can trigger residual emotions…emotions remembered from earlier events. This can be very enjoyable as long as you work to elicit only positive memories! Develop a playlist of her favorite songs. and sing along with her. That will add the positive feeling of togetherness.

Use food, or other favorite things. Randy is good at this. The food he brings leaves her with a memory of the pleasant feelings she had while she ate it. Ice cream is a dementia favorite. Sweet is often the last taste to fail, and the cold smooth texture is also pleasurable. And so is the still present emotional memory of other pleasant times when ice cream was consumed.

Do something with her. The fact that you are doing it with her is more important than what it is. This will bring about feelings of togetherness, self-esteem, and affections that will last long after you are gone and the event is forgotten. Look through a photo album, sing songs together, pray together, eat an ice cream cone too.

The bottom line is to do whatever you can while you visit to a) make sure her physical care is the best it can be and b) provide her with lots of positive emotions to remember later.

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.

Dealing with Resistance, Part 2

Notice: We are well into our summer season of traveling and from this day until the middle of October, when we return home, I will be posting blogs every two weeks.

This week's blog is the second in a two-week series of blogs in answer to Joan's post:

The main time my husband I argue is when he goes in his depends and refuses to let me change him. It is a horrible nightmare. Wish I knew what to do. Joan

Last week's blog was about Joan doing her homework, setting the scene and practicing being positive. Now, she needs to take a deep breath, put on her smile and go to work. If you haven't read last week's blog go do it now before you read more.

Joan, if your husband is resisting, he likely sees you as his tormentor. As long as this is so, just being positive isn't enough. Instead of trying to reason with him (hopeless!) or ordering him to be compliant (anger-making!), agree with him and become his ally.

• Help him to feel heard: Listen. Nod your head. Agree with his complaints.
• Help him to feel understood. Coo soothing words of sympathy. 
• Change the focus of his anger from you to what you want to change, in this case, his soiled pants. "Those awful pants are making you uncomfortable, aren't they? Let's get rid of them."

(Warning: Gentle touch is a great help, but not until the anger is defused. Otherwise, you are in danger of being hit as your husband strikes out in defense.)

Now that you are both on the same side, you can address any remaining fears. Work to figure out what the triggers are.

• One of them may be you! He may be reacting to his fear of giving up control--of being treated like a child instead of an adult. Work to treat this like a cooperative event as much as possible. Let him do what he can himself and include him in the task every way you can, even if it is simply to tell him what "we" are doing.
• Use your knowledge of your husband to think of any other fears that might be driving his resistance and think of ways to neutralize them.

With his fears decreased, his anger will dissipate and he will be able to start mirroring your positive attitude. With more positive emotions in control, he will be more agreeable and less resistant. Make sure you stay positive and give him lots of kudos. You can't overdo the compliments! Gentle, un-custodial touching (that given voluntarily and not needed for the job at hand) works wonders here. If you've planned for music, use it now. Music and its rhythm can help you promote togetherness, and the idea of working together. You can sing, but if you need your husband to help you, don't expect him sing too. He can do only one thing at a time.

If he starts getting resistive again, it means the fears are returning. This is especially likely to happen if you are too task oriented. Now is the time to take advantage of his short attention span and use distraction to change his focus from what he's beginning to worry about again to something pleasant. If you wait too long, the negative emotions will take over and you'll be back to square one. A bribe often works well--"Let's get this done so we can go have some ice cream."

Once the job is done, pile on the compliments, hugs and lots of gentle touching. And go get that promised ice cream. You need it too!

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.

Dealing with Resistance, Part 1

This next two-week series of blogs is in answer to a question from a frustrated care partner:

The main time my husband and I argue is when he goes in his depends and refuses to let me change him. It is a horrible nightmare. Wish I knew what to do. Joan

Sadly, your concern is far from unusual, Joan. It used to be that you could reason with your husband, changing his belief and changing his behavior. Reasoning is now useless. It requires thinking skills a Person living with dementia no longer has. Think of the process this way now:

• The surrounding environmental triggers an emotion. These can also be residual, that is, something perfectly benign may trigger an old fear.
• This emotion drives your husband's beliefs. Most driving emotions are negative. Designed to motivate, they are strong, pushy and long lasting.
• Your husband's beliefs drive his behaviors. Once he has made up his mind, he CAN'T change it. Can't, not won't. But he can change his focus--with your help!

Your first step is to educate yourself. Most care partners simply want to know HOW to deal with these difficult issues. However, until you know WHY they are happening, you probably aren't going to be very successful. It will also be more difficult for you to take what you've learned and apply it to a different issue.

• Learn why your husband's dementia-damaged brain won't allow him to change his mind.
• Learn why he can change his focus and what the difference is between changing his mind and changing his focus.
• Learn why you are the one who must change your expectations, your attitude and your actions.
• Learn why negative emotions motivate and drive behavior while positive emotions encourage calmness and relaxation.
• Learn why negative behavior is often triggered by the fear of something to be avoided.
• Learn why it is so important that you start positive and stay positive, no matter what.

This information is on our website, in our past blog entries, in our books (see below) and in Teepa Snow's free YouTubes.

Next you must prepare. "Set the stage" so that there are fewer triggers--fewer things to avoid.

• A common trigger when skin is about to be exposed is the fear of feeling cold. Make sure the bathroom is cozy warm before you even start and have all the supplies handy so the job won't take any longer than necessary.
• If mirrors trigger the fear that a stranger is watching, remove or cover them.
• If you can think of other ideas to help your husband feel more comfortable, implement them. It is worth the effort!

To start positive and stay positive in the face of his resistance takes practice and determination.

• Being positive does two things. It prevents you from escalating your husband's behavior the way being frustrated would and gives him something to mirror. He can't change his emotions himself, but he can mirror yours.
• Make the practice of being positive a part of your preparation, and think about how you can stay positive even in the face of his resistance. You want to be believed and so you must smile from your heart. It won't work otherwise!
• Take some time just before you start to make a conscious choice to be positive no matter what. Think of the love you feel for him and be determined let it show, even in the face of his resistance.

Plan your distractions, the methods you will use to change his focus. Each person living with dementia is different and so the distractions that work best will be different for each one too.

• Bribes are always a good bet and ice cream is a favorite. Make sure you are prepared and able to provide whatever you use as a bribe quickly.
• Music and rhythm can help you focus on working together. Unless you plan to do the singing yourself, set up your music delivery system ahead of time so that all you have to do is push a button.

Next week: The real event!

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 Disordes

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.

Constructive Caring, #7: Enjoying the Journey

The last blog in this series is about ways to enjoy staying positive. That's important being a positive care partner requires constant attention, constant effort. But that's OK because, the more you work on staying positive, the more enjoyable--and fun!--you will find it to be.

Meditate: Even a few minutes of meditation a day will decrease stress and improve sleep. Bonus: It also improves clarity and focus, both of which last long after the meditation is over. The goal is to give your brain a rest from all the busy, busy thinking it does. Meditation operates on the premise that your brain can do only one thing at a time. It rests your brain, adds oxygen and just makes you feel good. Here is a quick easy mediation:

• Close your eyes and focus on your breathing. In and out, slow and easy.
• Do that for as long as you want. Don't worry if you find yourself blanking out or drifting off. Just go back to focusing on your breathing.
• If you feel pulled in some other direction, if you find yourself thinking about something else, gently draw your attention back to your breathing.
• Don't be disappointed if you find it difficult to stay focused at first. That's normal. Just keep trying.

Slow down. Take time to stop and smell the roses, look at the sunsets, notice your loved one's smile, enjoy a relaxed meal. Even talking slower is better for you. Speedy behaviors cause the motivation hormones connected with negativity to flow and make you more nervous and uncomfortable. (And here you thought that talking slower was something you did for your loved one who needed the time to process! News flash: It is also good for you.)

Listen to music. Music is magic! It can relax you or energize you. Warning! Music can also trigger negative emotions, especially anxiety. If you find a kind of music that doesn't make you feel good, avoid it. You don't need that! Find music that you do enjoy and that relaxes or energizes you and listen to it regularly. Include the PlwD*, and make it a part of your daily lives. Music travels to the brain along its own pathway and people can enjoy it long after they can use language. Sing. Dance. Be the music. The more you do this, the more positive you will feel. The positive feelings you get from music will last a long time after the music has stopped playing.

Give a gift. It doesn't have to be material. Offer a compliment, help out with a chore, do a little extra. Caregiving can become more job than "helping" but if you offer just a little bit more, an extra pat or hug, it becomes a gift. Giving a gift triggers your own feel good hormones more than once. When you choose a gift for a specific person, you will likely imagine what it will feel like to give it. Since your brain doesn't differentiate between imaginary and real, you get to enjoy a hit of feel-good hormones then. With any gift, you get a hit when you actually give it and another when the giftee shows appreciation. (That's why, when you receive a compliment, you never want to discount it. Your self-put-down deprives the donor of their return gift.)

Laugh, smile and nod. Laugh all you can. Smile at everybody. Agree with people as often as you can. Nod to music. Yes, even that works! These all cause those gift-giving and receiving hits of feel-good hormones and another from the feeling of connection when your friend laughs, smiles or nods back with you. But you don't really need a reason to laugh, smile or nod. Just do it. They trigger your body to respond as though you were saying "Yes! Yes! Yes!" Even looking for reasons to laugh, smile and nod causes your body to respond as though you were actually doing it.

Be grateful. Gratefulness is another one like laughter that doesn't need a reason. Just looking for a reason is enough to trigger those feel good hormones. Just being grateful is enough, in fact. But finding the reasons increases your good feelings even more. Like other positive behaviors, gratefulness is contagious and so make sure you share. Tell others and give examples. For a real lift, read Lisa Cooke's guest blog entry on an attitude of gratitude. (3/6/2015)
http://lewybodydementia.blogspot.com/2015/03/an-attitude-of-gratitude.html

Use second-hand positivity. We match what we see, so just looking at something positive will make you feel positive. A cute puppy, a picture of a child's happy smile, an enjoyable movie, even a photo of a past happy event. In fact, you don't even need the photo. Just day dream about some past joy and you will get to relive the same happy feelings.

Play. Set aside some time to play, to do something just for fun, whatever that might be for you. Like music and meditation, the relaxation and clarity you get from playing will last for a long time after you finish up and go back to work. That's why kids have recesses!

(reference)

OK, now it is your turn. What do you do to keep on feeling positive?


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.

We love and welcome comments but we will not publish any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures and marijuana.

* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

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

Constructive Caring, #6: Dealing with Externals

The past blogs have mostly been about how you can think and act more constructively and make your own life and that of the PlwD's* happier, healthier and just plain easier. But sometimes, life intervenes and things beyond your control happen that are difficult to deal with. Nevertheless, you still have the power to choose how to deal with these unhappy events. By making conscious choices about how you view them, and how you think about them you can limit their negative effect on you and on your loved one.

• Look for the blessings. Instead of complaining, look for how the situation adds something to your life...interest, learning, experiences, etc "The worst service I ever had" becomes, "I'm glad we went there. Now I'll know not to go again!" "I lost again. I'm so unlucky." becomes "I sure had fun playing that game with you."
• Look for the silver lining even when things are truly bad and painful. You will naturally have some negative feelings--and rightfully so. Nevertheless, instead of allowing yourself to wallow in the negativity, look for that silver lining. "My mother has passed away and I really miss her but I feel so fortunate to have had her in my life."."
• Avoid feeling guilty. People often use guilt as an effort to control past events--it doesn't work. Your guilt will not change anything except to make you feel worse. Instead make a conscious choice to find something to feel better about. Instead of "I feel so bad that I wasn't always a good daughter, think, "We had some great times together."
• Look for the humor. Sometimes you may have to dig to find the positives but make it a fun challenge. "This trip is so disastrous that I know we'll laugh about later."

Criticism. One of the most difficult things a care partner has to deal with is criticism from family and even friends of a situation that they may not know as much as about as they think they do. Even when meant well, criticism can be difficult to deal with and if a person is already into self-blame, it can be catastrophic. Here are some guidelines to making criticism a little easier to deal with:

• Listen carefully. This is often the hardest part, especially if you don't believe the criticism is fair.
• Take a deep breath and think before you respond.
• Who is this about? "Is this about me, or them?" Is the them the PlwD*, who feels bad, and sees you as responsible for everything. Is the them a family member who is in denial or uneducated about the situation?
• Can this help me? Even if it is more about the other person than you, could the criticism be constructive? How? Will it add more information, more ideas? Or will it add to your own self-blame, guilt or worry?
• Choose to reply or let it go. Feel free to ignore a criticism if it isn't helpful.
  --With the PlwD, you may have to respond in some way so that they feel heard, but then you can move the conversation on into something more positive.
  --With uneducated family members who see Showtime** as the PlwD normal behavior, you will have to decide if they will accept or understand further education about LBD. Printed handouts from the LBDA or a medical source may work better than your own explanations.
• If you reply, stay positive, ask questions as needed and say "Thanks." Saying "Thanks" does not mean that you agree with the person, only that you appreciate their interest.
  --With a PlwD who is blaming you because of a delusion, you must not deny the accusation. Instead, become an improv actor and say you are sorry. (See blogs on dealing with delusions)
• Review. Make a conscious choice to accept the critique as constructive if you can find anything of value in it. Then plan how you will make any needed changes. Otherwise, consider it destructive and therefore, not worth your time.
• Let it go. Once you know of the issue (if there really is one), and have decided how to deal with it, the criticism's job is done.

Next week: On to happier topics, like how to have enjoy being positive and have fun with it.

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.

We love and welcome comments but we will not publish any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures and marijuana.

** Showtime: When a PlwD is experiencing a period of more than normal awareness. Often occurs with visiting family members or during doctor visits.

* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
LBDA: Lewy Body Dementia Association. LBDA.org
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

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

Constructive Caring, #4: Changing Habits

OK, you've lowered your stress level, belong to a great support group, and are aware of some negative thinking habits that you want to change. Now what? Will those negative thoughts just disappear? Sorry, it doesn't work that way. Negative thinking is a habit that takes commitment, time and effort to change. However, people do it all the time and you can too!

To change a habit, you need to notice a specific behavior and make a conscious, personal commitment to change it to a viable alternative. Write this down and tell someone else. Then do it. Reward yourself when you succeed and be gentle with yourself when you forget, and keep trying until the change becomes a habit. (Reference)

Now let's break this down:

• Notice: You have to be aware of what isn't working before you can change it to anything else.
• Conscious: Negative thinking is often automatic, like a PlwD's.* But because you can think abstractly, you can make purposeful choices that put you on the road to change.
• Personal: This is about you, not the PlwD or anyone else. Changing for someone else is like trying to make a bed with a ten-foot pole. It can be done, but not very easily, not very well and the effort seldom lasts long enough to get the job completely done. 
  "I will notice when I use all or nothing thoughts and stop using them."
• Specific: The more specific your commitment is, the more effective it will be. Chose one specific type of negative thinking and focus on changing it to something more constructive.
  "I will notice when I use extreme, all or nothing, words like "always," "never" in my thoughts and stop using these words."
• Viable alternative: If you try to stop a behavior or a way of thinking without providing a replacement behavior, you leave a vacuum. Your brain will backfire and go into its default mode of worry. The replacement also has to be something that will work for you. If it isn't, your brain will balk again and the change won't happen.
  "I will notice when I use extreme words in like "always," "never" and change them to more accurate words like "sometimes," "this time."
• Write it down. Once your commitment statement is complete, reinforce it by writing it. Now the information gets to travel to your brain via another pathway. It is also something you can look at every day and use as a reminder.
• Tell someone else: You are more likely to stay on track if someone else knows about your commitment. Utilize your positive friends as role models and sounding boards. They can also confront any exaggeration of "mistakes" into "failures."
• Do it. Making a change requires overcoming the fear that you won't do it right, or that you might even fail and practicing the change over and over.
• Reward yourself. When you catch yourself exaggerating, stop and say something more accurate, give yourself a verbal pat on the back, a compliment--and mean it. "Hey, I did it. I'm getting more specific by the minute!" Your brain views sincere compliments as positively as it does a material gift.
• Be gentle. When you forget and exaggerate--and you will!--be as compassionate with yourself as you would be with a friend. Use the experience as a learning tool. Feel the guilt long enough to own the mistake. Then worry about it long enough to consider how to keep from doing it again. With that, the value of guilt and worry is over. Let them go.
• Keep on keeping on. Notice, commit, practice, reward, share, and do it again and again. Don't expect to change overnight. Researchers now say that it can take 2-6 months to change a habit. So be patient, keep working, keep rewarding yourself and keep talking about your successes.

Eventually, you will find that you are automatically using more accurate words instead of extreme words. You aren't making conscious choices anymore, it just comes naturally. It's a habit! With that done, you can start over and change another habit.

With each negative thinking habit you change to something more constructive, you will also experience some longer lasting rewards. Every so often, stop and take inventory. Are you happier? Do you feel better? Is your health better? What about your loved one? Is the same true for them? Are there fewer negative behaviors? Are they more content? And finally, own the constructive changes you've made and give yourself lots of credit.

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.

We love and welcome comments but we will not publish any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures and marijuana.

* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

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