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.