The Whitworths of Arizona, bringing science to you in everyday language.

Friday, March 29, 2013

Socializing Issues and Suggestions

Casual socializing, i.e., visiting and sharing thoughts, helps to make a person feel normal—and it stimulates  the brain too. Spend some time with your loved one each day just visiting. If they are in a care facility, this will be extra important. Staff members are very good at providing physical care but they don’t have a lot of time to be sociable. Most interactions will be care-oriented or during leader-centered group discussions. Such one-way transactions do not meet a person’s need for socialization.

As LBD encroaches, socializing, and especially verbal communication becomes more difficult. Here are some of the problems you will face and some suggested fixes:

Movement issues. If there is also Parkinson’s, involuntary movements can cause self-consciousness, embarrassment and other negative feelings.

Fix: A good exercise program will help to retain movement as long as possible. Physical therapy programs like “Big and Loud” also help.

Fix: Presenting a matter-of-fact attitude showing acceptance helps your loved one deal with handicaps more easily. It also provides a model for the people you meet to follow, lowering your loved one’s anxieties even more.

Negative feelings. Feelings such as fear, frustration, anxiety and anger cause stress, which increases LBD symptoms, making the ability to socialize even more difficult.

Fix: Search out and identify what is triggering the negative feelings and make changes to decrease the triggers.

Weakened facial muscles. These can cause a low, soft voice, even when the speaker believes he is quite loud.

Fix: Programs like the above Big and Loud help to strengthen these muscles by encouraging patients to practice shouting in a fun atmosphere.

Fix: Keep your attention focused on what your loved one is saying and listen carefully.

Language difficulties. Your loved one may not be able to find the right word or may use the wrong word, often without even being aware of the substitution.

Fix: Look for non-verbal cues. These may be more accurate than words.

Fix: Use your familiarity. Caregivers who have been with their loved one for a long time will often find that they understand with very little communication-- the food they prefer, the way to situate the chair for most comfort, etc. You have probably been communicating thoughts with no more than a glance for years. Keep on doing it.

Fix: Ignore the mistakes. Do not call your loved one on their inaccurate substitutions. Or at least, don’t do it unless it is important. Usually, you can figure out what is meant. Accept that and move on.

Interpretations may be inaccurate. Your loved one doesn’t have the ability to choose a meaning for an unclear word, based on the rest of your sentence. Also, negatives may be missed. “Don’t sit” can easily be interpreted as “Sit.”

Fix: Talk clearly and avoid complex statements. If there seems to be confusion, say it again using different words.

Fix: Talk at a normal level. Shouting causes words to vibrate and become unclear. It can also cause anxiety.

Fix: Phrase your sentences positively: “Sit here” or “Stay standing.” The healthy subconscious brain tends to ignore negative prefixes to a directive—hypnotists learn that “sit” and “don’t sit” often generate the same response. Likewise, your loved one’s weakened ability to discriminate may cause these two directives to sound the same.

Thinking is slower. It can take 30 seconds or more to process a question and come up with an answer. Although this may seem like forever to you, your loved one is very busy processing and it doesn’t seem long at all to them.

Fix: Be patient. Count to 30 before expecting an answer.

Fix: Practice patience with a smile. You need to act willing, even happy to do so. No one likes to be a bother.

Distractions. LBD makes it very difficult to focus on more than one thing at a time. Anything can take the focus away from the conversation: TV, a bird flashing by outside, children playing, and so on.

Fix: Do a survey of your area before you try a conversation. Eliminate as many distractions as possible. Distractions can be varied—audio from the TV in another room, visual from a loud blouse you are wearing, movements from the wind blowing the trees outside the window, etc.

Fix: Make sure that YOU are the center of your loved one’s focus. Be face to face and use touch to keep your loved one’s attention focused on you.

Other issues. Poor hearing or poor vision make communication more difficult. Depression and apathy make it harder to make the effort to communicate. Pain, infections and other illnesses will take priority and remove focus away from communication.

Fix: If you suspect any of these have them checked. Even a healthy person can become isolated by deafness, for instance.

Friday, March 22, 2013

Depression, Apathy and Fatigue

These three are all symptoms that people with Lewy body (PwLB) disorders often experience. How do you know which is which? They can all make your loved one (or you!) feel so tired that they can hardly move and all they want to do is sleep.

Depression causes changes in mood, thinking, physical well-being and behavior. It generates such feelings as sadness, misery, unhappiness, anger, loss and frustration. Besides decreasing quality of life, it adds stress and decreases one’s ability to deal with illness. A person who is depressed has the motivation to improve but not necessarily the ability to do so. They will complain about being too tired and wish they had the energy to do more.

Situational depression is usually short term, caused by a distressing event. When a PwLBD’s depression doesn’t leave, or appears to get worse, it is probably not situational but is instead a neurological symptom of the disorder. Depression makes it more difficult to do tasks, make decisions or interact with others, all abilities that can also be decreased by dementia. Like LBD, it cannot be cured but can be treated. There are some Lewy-safe antidepressants which may improve cognitive functioning.

Apathy is the loss of motivation, without associated feelings of depression. It damages one’s self-starter—that extra push we need to overcome the inertia of inactivity. As it increases, it also decreases the ability to keep going.  With apathy, nothing is easy. Everything takes effort, often more effort than a person can muster up.  They may appear to have given up, accepting things as they are, voicing few complaints or wishes for change.

Fatigue is an extreme loss of energy. The loss may come from working hard. This doesn’t necessarily mean hard physical labor. If there are language difficulties, then talking can be exhausting. With motor problems, walking can wear your loved one out very quickly. Dealing with stress or illness can be tiring. Depression and apathy both deplete energy and leave a person feeling fatigued.

Negative feelings such as sadness or loss along with the presence of motivation suggest depression.
Ex: “I wish I didn’t feel so down all the time.” Or “I wish I had more energy.”

Negative feelings without motivation suggest both depression and apathy.
Ex: “I feel so down. I can't do anything. Just go away and leave me alone.”

The lack of both negative feelings and motivation suggests apathy alone.
Ex: “I don't care that I can't do that any more. Leave me alone; I just want to sleep.”

For the PwParkinson's, apathy without depression is a sign that dementia may soon appear. Consider a test for MCI.

Friday, March 15, 2013

Books About LBD, The Bad and the Good

There are more and more books out now about Lewy Body Dementia. Some are good. Some aren’t. Here is our take on a few of them:

One book we were asked about recently was Lewy Body Dementia: Causes, Tests and Treatment Options by Adam Wainwright MA, Erik Stevenson MD and Deanna R Miller RN (Apr 14, 2012).  We had great hopes for this book when it first came out. Like A Caregiver’s Guide to Lewy Body Dementia, it appeared to be a fairly easy to understand overview of LBD although its presentation is a little more scientific.  However, upon reading it, we found that other than a section on testing, most of the information is similar to that in the Guide, but not as thorough. Also, it contains very few personal experience examples, making it a less interesting read. Although this book has been out almost a year, it has only six Amazon reviews. The last reviewer, back in July, referred readers to the Guide as a better choice. We do too.

Another book we see people ordering occasionally is Dementia with Lewy Bodies by John Hewitt MA and Michelle Gabata MD (Apr 15, 2011) The under $10 price may make it attractive but the reviews are enough to keep us from spending our money. Again, there are only six and the last three give it only one-star. One reviewer describes the book as 28 pages of subject matter, an inadequate glossary, and an unexplained 94 page directory of holistic physicians. A review from a geriatrician states that the book “could do more harm than good” and says he/she could not recommend it. Reviewers also note that the LBDA is not mentioned anywhere in the book.

A third book on our “Do not buy list” is The Official Patient's Sourcebook on Dementia with Lewy Bodies, A Revised and Updated Directory for the Internet Age, by Icon Health Publications, James Parker and Philip Parker, Eds. (2002). First, too much has happened with LBD since it was published.  Secondly, it truly is only a directory of internet resources available in 2002, and not worth the high cost of nearly $30. Finally, the single (one-star) Amazon review reports that it is “more for medical students or doctors and not for the common person.” We'd argue that even medical personnel would not find this book very helpful.

On the positive side, here are a couple of books that we loved:

Living with Lewy Body Dementia (Sep 5, 2012), is written by Judy Towne Jennings, a physical therapist who shares her expertise with her readers as she tells her story. The book is worth buying just for that. But it has more. She suggests looking at the Lewy journey as an adventure and doing all you can to make your life enjoyable. She and her husband traveled and she shares many traveling tips.

We also recommend Treasures in the Darkness by Pat Snyder (Apr 6, 2012).  As Pat tells her story, she writes about early LBD and how to slow it down. She emphasizes decreasing stress and being prepared. Her chapter on renovating her home to be able to keep her husband home longer is great. Like Judy, she also encourages families to enjoy the life they have.

You can get the Guide and the last two books by going to the  LBD Book Corner, on While you are there look around and see if there is anything else you might enjoy. Thank you in advance for doing your Amazon shopping from our website. The small fees we receive from Amazon help to pay for our work.


Friday, March 8, 2013

Things I Wish I'd Done

Things I thought I knew about him but without him there to verify it, wasn’t really sure. Dates and papers I discovered too late that I’d need—and had to guess or do without. Some cost me money. Some just cost me peace of mind.

It is the same for a caregiver of anyone with dementia. Ask early on. Get it in writing. Make lists and store them in safe places. Safe and KNOWN places. Tell another family member. Share a copy with your attorney. Before my sister died, we’d done much of this and then I stored it all in a safe place. I didn’t tell anyone else where it was. After all, I knew I’d be there when it was needed. However, in the stress of her dying, the place was so safe that I forgot where it was. Luckily, she had also shared a copy of her will with her attorney. Then when we cleaned out her home, we found her papers right where I’d put them—in the back of her freezer. (That’s actually a good place to store papers by the way. It keeps them safe in case of fire and it isn’t a place thieves tend to look.)

While Lewy is still mild and your loved one is able to participate, make up your wills, and get durable powers of attorney for both financial and health care and a living will. Make lists of all legal papers for things such as deeds, insurances, military discharge, birth, marriage and divorce and show where each is kept. List all your financial holdings, including real estate, stocks and bonds, and bank accounts. Add a list of all of your digital information: the ID and passwords for bank accounts and other online websites you will want to know later. This last has become more and more important. For instance, if you don’t have a password to your loved one’s Facebook page, you will not be able to access any of the information on it nor will you be able to delete it. Once you have all this information, do not forget to share it with at least one other person. Don’t make my mistake!

You should also talk together about what should happen if you are unable to be the physical caregiver. This is usually a difficult discussion and therefore avoided. However, fulltime caregivers often die before their charges do. In other cases, they become too ill for them to care for their loved ones safely. Emphasize that such a change would be so that someone else could do the heavy lifting, thus making it possible for you to preserve your health and continue to care for him. Talking about this before it is needed will make the transition to a care facility much easier if and when it is needed. You will have a better idea of what your loved one prefers. More importantly, it will remain with your loved one in some form and decrease some of their resistance.

Friday, March 1, 2013

Grieving a LBD Diagnosis

Anytime a family member receives a diagnosis of a degenerative disorder, there will be grief. You grieve for the life you hoped to have and can no longer expect. You grieve for the future ahead of you. This will be an ongoing process, sometimes more severe than others, from now on.

Grief about a degenerative disorder like LBD can be seen as a seven-step process :

Shock. This initial paralysis blocks feeling and allows you the time you need to recover and move on. This is usually very short lived—only an hour, or a day or so.

Denial. You begin to have feelings again, but block out the possibility of the disorder. Denial gives you the time you need to adjust. It is nature’s way of letting in only as much as you can handle. You resist the diagnosis. “Surely it is wrong. I can’t have this. My loved one can’t have this.” Some people stay in this step. Family members who aren’t living with the disorder day by day, for instance, are notorious about not being able to move past denial.

Anger. The value of anger is that it gives you energy to move on, strength to face this difficult event in your life. You are beginning to accept the reality of the diagnosis and you rail against it. “Why me? Why my loved one?” For some, this is the most difficult part of the grieving process because anger is an acceptable feeling for them. “How can I feel angry at God? At my loved one? At whatever….  Why am I angry all the time? I used to be a very nice person and now I’m a shrew.” Anger is a natural part of the grief process. Repressing or bottling it up will only make you feel worse. The more you let yourself express it, the sooner it will pass.
Anger is another step that distant family members may get stuck in. Expressing disapproval and anger at the way their loved one’s situation is being handled by someone else may be their way of participating—not a very helpful way, but nevertheless, more common than we’d like to admit. For an extreme example of this read Going Mad, by Carol Pendergrass, available in the LBD Book Corner.*

Bargaining. “OK, I believe the diagnosis but there must be something I can do, we can do, something someone can do to change it, to bring back the life we had.” You are seeking in vain for a way out.

Guilt is a close companion of bargaining. It is a way of trying to maintain control of the past. “If only I’d….,” “We should have….,” “Why didn’t I….,” are all useless recriminations about the past. What is, is. Guilt can’t change it. It just adds stress to an already stressful situation.

Depression. The final realization of the inevitable. “Yes, the diagnosis is true. My life is over, done. Why bother.” Situational depression is a natural short-term response to any loss and this is definitely a serious, ongoing loss. However, depression is also a LBD symptom and so the depression may become clinical. That is, it may last longer and may need to be treated. There are some Lewy-safe medications for chronic depression.

Testing. As you come out of your depression you may find that you are looking for more realistic answers. ”OK, this is the life we have. What can we do to make it better, to make it tolerable, to make it enjoyable again?” And there are answers to those questions, such as good nutrition, exercise and decreasing stress.

Acceptance: This is what you’ve been aiming for. It does not mean that you believe everything will be all right, or even that it will be the same ever again. It does mean that you’ve found a way to move forward, to continue to find meaning in the life you’ve been given.
Acceptance allows you to release the energy and power you were using for denial, anger, guilt or self-pity and use it to move on, to take advantage of the testing you did. “Life is still worth living. I can do this.” Take a breath, relax a little.

As humans, we all cycle through these steps more than once, often changing their order, skipping one, feeling stuck in another. You may find yourself angry and then accepting, and then in denial and then feeling guilty, and then angry again, etc. Just knowing that it is a natural process will help you go through it more easily, although perhaps easily is not the right word. Grieving is never easy, but it IS necessary. The alternative is to be stuck in one of the steps and that is more painful in the long run. Yes, it is painful to feelings of loss, but then you can let them go and move on.

Because LBD is a degenerative disorder, anyone involved with it will continually be dealing with new losses and new feelings that have to be processed. You will find yourself going through these grief steps over and over. However, as you learn the process, you may find it will take less time and you will be able to stay in acceptance longer.

*The LBD Book Corner is on our website: