These tiny black seeds can be healthy additions to your diet. Although they apparently don't do much for dementia specifically, they are good soldiers against aging in general. They also are helpful with diabetes, fighting infections, increasing energy, and decreasing wrinkles. But caregivers beware! If you or your loved one are prone to swallowing or intestinal problems, do NOT eat them unless they've been cooked or well soaked. In the presence of fluid, these raw seed swell up to at least twelve times their size and have caused serious blockages in the esophagus or intestine.
This doesn't have to stop you from using them. They have little flavor and you can toss them into almost anything you cook. In mac and cheese, they look like pepper. In oatmeal, they add bulk--great for the dieter. You can even make no-cook puddings with them. See the recipes below. I made the chocolate pudding and found it tasty, although the slimy texture is a bit of of a put-off.
These tiny black seeds are NOT supplements. They are "plant-based food," which makes them especially good for your diet. With a few exceptions, it is best to get your vitamins and minerals from foods rather than supplements. Research has shown over and over that food based nutrients metabolize and do their job than supplements do.
One ounce of chia seeds (app. 28 grams or 3 tablespoons) contains:
• 10 grams of fiber (app. 30% of RDA). Fiber is a much needed substance, used for bowel regularity, colon detoxification, and to eliminate toxins. It does its job as it passes through the body and is mostly indigestible.
• 12 grams of carbohydrate, only 1 of which is digestible (the rest is fiber!)
• 138 calories. With the fiber subtracted, the useable amount is only 101 calories.
• 8-9 grams of fat. Over half is Omega3, a very healthy fat.
• 5 grams Omega3, 200%+ of the recommended daily amount (RDA)
• 4-5 grams of protein. That's almost as high as meat and higher than eggs. Although chia seeds are a vegetarian protein, they contain all the amino acids. This can be said of very few other types of plant-based vs. animal-based foods.
• 11 grams of fiber, app. 30% of RDA.
• 18% RDA of calcium
• 27% RDA of phosphorus
• 30% RDA of manganese
• 30% RDA of magnesium
• 9% of your daily requirement of calcium (more per oz than dairy products!)
• 7% of your daily requirement of iron
• "Decent amounts" of zinc, potassium, and Vitamins B1 (Thiamine), B2 and B3 (Niacin)
• Enough antioxidants so that the seeds can be stored for long times without deteriorating or becoming rancid.
Chia seeds, used safely, are fun to experiment with and they can improve your diet.
• Add 1 T chia seeds to 1 c water and store your fridge to use raw. Add these soaked seeds to smoothies, or stir them into cold cereal, yogurt, applesauce, etc. Quick method: Add seeds to boiled water and soak at least 2 hours. Stir several times.
• For a smoother texture, use a coffee grinder to pulverize the seeds or put them in the blender with juice, milk or water before use.
• Make thickened fluids by adding raw chia seeds to juice, soup or other fluids. Let stand until fluid thickens before serving. (Overnight, or at least two hours.)
• Use 1 T of chia seeds with 3 T of water as a substitute for 1 egg in baking. Let the mixture sit until it turns into a gel before adding it to the mix.
• Use soaked chia seeds in place of oil or butter in cooking or baking.
• Use chia seeds as a thickener for stews or casseroles. Soak 1 T chia seeds in 1 c water overnight (or at least 3 hours).
• Chia fruit pudding: Blend 1/2 cup of fruit, sugar, honey or sweetener to taste, 1 t vanilla extract and 2 1/2 c milk until smooth. Pour over 1/2 c chia seeds, stir thoroughly. Let rest for 5 minutes and stir again. Repeat in 10 minutes. Cover and refrigerate for at least 3 hours. Serves 4. Vanilla pudding: Leave out the fruit and decrease the milk to 2 c for vanilla pudding.
• Easy chia chocolate pudding: Mix 1 pkg hot chocolate mix, 1/4 c chia seeds. Add 3/4 c water or milk and 1/t vanilla and stir well. Let rest for several hours, stirring occasionally. Serves two.
Facts from Chia Seeds: Health Benefits and Nutritional Information.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
Friday, February 26, 2016
Saturday, February 20, 2016
Meeting Old Friends
A while back, we met up with some old friends. It was a bittersweet time…Donna was no longer the young bride I made the wedding dress for over 30 years ago. She was still petite and shapely but she shows her age, which is close to mine. Ben isn't the strutting young man I remembered either. He's now white haired, hesitant and newly diagnosed with PD. This disorder shows up differently for each person. For many, a first noticeable symptom is tremors. But Ben doesn’t have tremors. For others, poor posture and balance are common. Ben doesn’t have this either.
But he is beginning to be forgetful. “I get so discouraged,” he says. “I read a whole page and when I’m done, I can’t remember what I read.” Then he grins, “But I can still run!” He seems to be as physically fit as his wife. I wonder if he’s been misdiagnosed and actually has DLB, dementia with Lewy bodies. It can start with symptoms like this instead of movement problems. They said that he’d been pretty bad…couldn’t even dress himself before changed doctors. The new doctor changed his meds and now he’s much better. How often we hear this! Those PD drugs can really do a number on a person’s thinking abilities. I can’t help wondering what he’d be like if they decreased his PD drugs he’s on now, or even stopped them entirely. Maybe he wouldn’t be able to run anymore. But maybe he could remember what he read…
Ben can still speak clearly and easily but he says, “I’m losing my voice—it’s a lot softer than it used to be.” He’s been attending Big and Loud classes and says they help. I also notice that his facial muscles are not allowing him to be as expressive as I remember either. He credits Donna with his successes. “She keeps me moving,” he says. “We walk the dogs several miles a day,” she says. She adds, “He’s right. I make him do it. I know he has to keep moving.” We gave them both kudos for the great exercise program they have going and reminded then that the exercise is as good for the mind as it is for the muscles.
Donna says that several years ago, Ben traveled to his sister’s funeral and came back "a different man." More like he is now. Ben talks about his last job, which was very stressful followed by that trip which had also been a stressful time filled with family dissention. “Did all that stress cause the PD to show up?” he asked.
“No, but it might have made it happen sooner,” I answer. Our bodies are very efficient at fighting off a lot of things that we aren’t even aware of. Adding a certain amount of stress actually makes them work better. We function better with a bit of challenge. But when the stress becomes greater than we can handle, it becomes destructive. That is, it becomes a priority and the body’s resources go to trying to managing the stress instead of other functions, like fighting off unwanted intruders, diseases, and the like. Age does the same thing as the body wears down and can’t be as efficient anymore. And so Ben would probably still have developed PD, but the stress may have hurried it along. Ben and Donna work now to keep stress at a minimum.
“Ben sleeps a lot,” Donna confides. I reassure her that this is normal...living with PD, or DLB for that matter, is hard work. And they are still quite social, going to church, Ben's men’s group, out with friends, and such. Each of these events is likely to bring on a bout of Showtime, (where he appears better than he is at home with just Donna) and this takes a lot of energy too. Later, though, I wondered if he might be depressed. Several times he voiced his unhappiness with having PD…not unreasonable feeling. No one WANTS this baffling disorder! Depression due to the news that one’s golden years aren’t going to be what was expected is a common reaction. Sadly, depression is also be a common Lewy body symptom. We suggested that Donna and Ben talk to his doctor and ask about some safe anti-depressants. There are some that usually work fairly well with the Lewy body disorders.
My friends are managing well, or at least as well as they can with this confusing disorder. Jim and I encouraged them again to follow up on the depression issues and to continue with their physical and social endeavors. We added that Donna needs to find a support group and she agreed to work on this. I hope she does. Like most caregivers, she is less diligent about her own care than she is about her husbands. Maybe we should have caregivers for caregivers!
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
But he is beginning to be forgetful. “I get so discouraged,” he says. “I read a whole page and when I’m done, I can’t remember what I read.” Then he grins, “But I can still run!” He seems to be as physically fit as his wife. I wonder if he’s been misdiagnosed and actually has DLB, dementia with Lewy bodies. It can start with symptoms like this instead of movement problems. They said that he’d been pretty bad…couldn’t even dress himself before changed doctors. The new doctor changed his meds and now he’s much better. How often we hear this! Those PD drugs can really do a number on a person’s thinking abilities. I can’t help wondering what he’d be like if they decreased his PD drugs he’s on now, or even stopped them entirely. Maybe he wouldn’t be able to run anymore. But maybe he could remember what he read…
Ben can still speak clearly and easily but he says, “I’m losing my voice—it’s a lot softer than it used to be.” He’s been attending Big and Loud classes and says they help. I also notice that his facial muscles are not allowing him to be as expressive as I remember either. He credits Donna with his successes. “She keeps me moving,” he says. “We walk the dogs several miles a day,” she says. She adds, “He’s right. I make him do it. I know he has to keep moving.” We gave them both kudos for the great exercise program they have going and reminded then that the exercise is as good for the mind as it is for the muscles.
Donna says that several years ago, Ben traveled to his sister’s funeral and came back "a different man." More like he is now. Ben talks about his last job, which was very stressful followed by that trip which had also been a stressful time filled with family dissention. “Did all that stress cause the PD to show up?” he asked.
“No, but it might have made it happen sooner,” I answer. Our bodies are very efficient at fighting off a lot of things that we aren’t even aware of. Adding a certain amount of stress actually makes them work better. We function better with a bit of challenge. But when the stress becomes greater than we can handle, it becomes destructive. That is, it becomes a priority and the body’s resources go to trying to managing the stress instead of other functions, like fighting off unwanted intruders, diseases, and the like. Age does the same thing as the body wears down and can’t be as efficient anymore. And so Ben would probably still have developed PD, but the stress may have hurried it along. Ben and Donna work now to keep stress at a minimum.
“Ben sleeps a lot,” Donna confides. I reassure her that this is normal...living with PD, or DLB for that matter, is hard work. And they are still quite social, going to church, Ben's men’s group, out with friends, and such. Each of these events is likely to bring on a bout of Showtime, (where he appears better than he is at home with just Donna) and this takes a lot of energy too. Later, though, I wondered if he might be depressed. Several times he voiced his unhappiness with having PD…not unreasonable feeling. No one WANTS this baffling disorder! Depression due to the news that one’s golden years aren’t going to be what was expected is a common reaction. Sadly, depression is also be a common Lewy body symptom. We suggested that Donna and Ben talk to his doctor and ask about some safe anti-depressants. There are some that usually work fairly well with the Lewy body disorders.
My friends are managing well, or at least as well as they can with this confusing disorder. Jim and I encouraged them again to follow up on the depression issues and to continue with their physical and social endeavors. We added that Donna needs to find a support group and she agreed to work on this. I hope she does. Like most caregivers, she is less diligent about her own care than she is about her husbands. Maybe we should have caregivers for caregivers!
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
Saturday, February 13, 2016
Don't Take It Personally!
Most LBD caregivers have heard this: “It’s not my loved one acting out. It’s the disease.” Mary Givens often responds to that with a “Yes, but.” “Yes, but it is so difficult to separate the person who still looks and often acts like Ed from his disease.” “Yes, but it still hurts.” “Yes, but I forget.” And so on. Being able to separate yourself from a person’s action is a learned behavior—an adult behavior. It takes insight, and the ability to make a conscious choice to look at the situation a different way.
Mary is a grandmother as well. For her two year old grandson, Jerome, everything is about him and he acts on his feelings without thinking. This is normal and he will grow out of it. Not as quickly as you may think, however. Mary’s son just went through a divorce and his 15 year old daughter, Megan, is devastated. She believes she caused the divorce because her dad couldn’t deal with her teenage behaviors. Even though her parents have insisted that this isn’t so, that it was their inability to get along, Megan still feels to blame.
In fact, do we ever grow out of our self-centeredness completely? Well, yes, most people do, but we often regress, especially when stressed. Stress limits our resources and we tend to regress back to earlier coping behaviors—to acting on feelings impulsively with little or no evaluation as to their validity and to seeing things from a lens that excludes other people's feelings and concerns. The person who “never” cries, cries. The usually careful dieter pigs out on junk food. The caregiver who can usually recognize that her loved one’s behavior isn’t about her takes the behavior personally.
With LBD, the person begins to regress back to that place where everything is again taken personally. like Mary’s grandson, everything is about "me."
Mary is like most people. Her initial response to Ed’s negative behaviors, even when she knows it isn’t really about her, is to take it personally. For a moment, she is shocked, angered, scared, insulted, etc. However, she has found that when she acts on that initial feeling, she is in a no-win situation, squabbling with Ed like a couple of toddlers. No one gets their needs met. Certainly not Mary, who probably ends up crying. And not Ed, whose behavior was likely a stress-related communication about something he needs.
Ed can’t change. He will likely continue to express his needs with shouting and other acting out behaviors. And Mary will continue to respond initially by taking it personally. But Mary doesn’t have to stay there. She can still think and make judgments and choices and act on them. And so Mary makes a conscious choice to view the behavior as a symptom of Ed’s disease. Immediately, this reduces her stress level. It is no longer a personal assault. It is now a cry for help. Now, in caregiver mode, Mary starts looking for the cause of Ed’s irritability. She knows that if she finds it and responds to that, Ed will probably calm down.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
Mary is a grandmother as well. For her two year old grandson, Jerome, everything is about him and he acts on his feelings without thinking. This is normal and he will grow out of it. Not as quickly as you may think, however. Mary’s son just went through a divorce and his 15 year old daughter, Megan, is devastated. She believes she caused the divorce because her dad couldn’t deal with her teenage behaviors. Even though her parents have insisted that this isn’t so, that it was their inability to get along, Megan still feels to blame.
In fact, do we ever grow out of our self-centeredness completely? Well, yes, most people do, but we often regress, especially when stressed. Stress limits our resources and we tend to regress back to earlier coping behaviors—to acting on feelings impulsively with little or no evaluation as to their validity and to seeing things from a lens that excludes other people's feelings and concerns. The person who “never” cries, cries. The usually careful dieter pigs out on junk food. The caregiver who can usually recognize that her loved one’s behavior isn’t about her takes the behavior personally.
With LBD, the person begins to regress back to that place where everything is again taken personally. like Mary’s grandson, everything is about "me."
Mary is like most people. Her initial response to Ed’s negative behaviors, even when she knows it isn’t really about her, is to take it personally. For a moment, she is shocked, angered, scared, insulted, etc. However, she has found that when she acts on that initial feeling, she is in a no-win situation, squabbling with Ed like a couple of toddlers. No one gets their needs met. Certainly not Mary, who probably ends up crying. And not Ed, whose behavior was likely a stress-related communication about something he needs.
Ed can’t change. He will likely continue to express his needs with shouting and other acting out behaviors. And Mary will continue to respond initially by taking it personally. But Mary doesn’t have to stay there. She can still think and make judgments and choices and act on them. And so Mary makes a conscious choice to view the behavior as a symptom of Ed’s disease. Immediately, this reduces her stress level. It is no longer a personal assault. It is now a cry for help. Now, in caregiver mode, Mary starts looking for the cause of Ed’s irritability. She knows that if she finds it and responds to that, Ed will probably calm down.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
Sunday, February 7, 2016
New Bookstore and New Workshop
This week, I'm using our blog to share information about a new feature here and about an upcoming workshop.
The new feature is a link to our new LBD Bookstore. You can find a link to it at the top of the Right Panel. Do check it out. Feel free to make suggestions for additions as well. Eventually, the one on LBDtools.com will be like this one as well, but changes take time. In the meantime, use this one. It is much more current.
The flier below tells about the workshop we are co-sponsoring. We are excited and know it will be both educational and fun to attend. If you live in the area, do check it out! For more information and to register, go to HealingThings.com. This time it is is local, but even if you don't live in Arizona, let me know if it sounds like something you'd like to attend. We'll be doing them again, I'm sure, and next time we plan to make it a two day affair.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
The new feature is a link to our new LBD Bookstore. You can find a link to it at the top of the Right Panel. Do check it out. Feel free to make suggestions for additions as well. Eventually, the one on LBDtools.com will be like this one as well, but changes take time. In the meantime, use this one. It is much more current.
The flier below tells about the workshop we are co-sponsoring. We are excited and know it will be both educational and fun to attend. If you live in the area, do check it out! For more information and to register, go to HealingThings.com. This time it is is local, but even if you don't live in Arizona, let me know if it sounds like something you'd like to attend. We'll be doing them again, I'm sure, and next time we plan to make it a two day affair.
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
Sunday, January 31, 2016
When Your Insurance Claim is Denied
A recent Facebook post triggered this blog. "Wow!" I thought,"That's really helpful. I'll write a blog about that." But then I researched it and found that it falls into the category of "If it sounds too good to be true, it probably is." Called "Medical Hack," it tells readers who have been denied an insurance claim to call the insurance company, ask for their HIPAA Compliance/Privacy Officer, and demand the names and credentials of all the people accessing your record to make the denial. It goes on to say that almost always, the insurance company to reverse their decision because they don't want the government agencies, or you, to know that non-medical, high school level people are making these decisions. Sounds easy, huh? Well, don't be fooled. Go to Snopes.com and see how they found the post to be mostly bogus.
That said, most of us have had an insurance claims denied. With the medical concerns connected to LBD, and the confusion around what the disorder can cause, it is something LBD caregivers should be prepared for. Forbes.com provides a well documented, list of things to do about claim denials, things that are more likely to bring results than the above "Medical Hack."
1. Start by making sure the claim is correct:
4. Negotiate. If the claim continues to be denied, the reason will almost always be based on cost.
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
That said, most of us have had an insurance claims denied. With the medical concerns connected to LBD, and the confusion around what the disorder can cause, it is something LBD caregivers should be prepared for. Forbes.com provides a well documented, list of things to do about claim denials, things that are more likely to bring results than the above "Medical Hack."
1. Start by making sure the claim is correct:
- Know your insurance's limitations. If it covers the procedure only in certain instances, does your situation fit? Can you or your doctor make it fit? Wording makes a difference.
- Get the authorization. Most insurances require a heads up prior to the procedure. Make sure your doctor does this.
- Show objective evidence of need. Know if there are tests or procedures that need to be done to prove the need for this procedure. The doctor will usually tell you, but ask if this doesn't happen. Make sure the tests, etc. have been done and documented?
- File in a timely manner. If the doctor's office files the claim, ask to be informed about when the claim was filed with the insurance. If you aren't notified right away, check on it. The claim might be rejected if it was not filed in a timely manner.
- Pay your co-pay, deductable or patient portion amounts as they are due. Unpaid, this can be a reason for rejection.
- File everything electronically and keep a digital paper trail as a reference.
- Conduct all correspondence concerning your claim via e-mail whenever possible. This includes correspondence with your doctor. (Snail mail is fine, too, as long as you keep copies and logs.) If the communication is during a doctor's visit, ask for a record of it from there.
- Make necessary corrections. If it is any of the above, do what is needed to correct the paperwork.
- Be proactive. The more proactive you are, the more likely you are to get a positive result. Ask specific, detailed questions like whether your claim was filed digitally or physically. Ask for copies of that filing.
- Correct codes. There may be errors or omissions in the diagnosis and procedure coding. These codes are what the insurance company goes by, more than words! Ask the doctor to rewrite the incorrect information.
- Get a letter of medical necessity. The insurance company may say there was insufficient medical necessity. Ask the doctor to write a "letter of medical necessity," specifying diagnosis, recommended treatment, and the length of treatment time. This may also work if the claim was denied for lack of prior authorization.
- Enlist the support of advocates: Talk to the doctor again. Doctors have to deal with such issues all the time and they know the right words to use. The hospital social worker is another good resource.
- Apply again and again. Because insurances work on a profit basis, the longer they can keep from paying out money, the more profit they can show. The more times you reapply, the higher your chances are of approval.
4. Negotiate. If the claim continues to be denied, the reason will almost always be based on cost.
- Negotiate a percentage. Learn the true cost of the procedure and negotiate a percentage the insurance will cover if you pay the rest.
- Move the negotiations down a level. If the insurance won't cover, negotiate with the hospital and doctor. They will almost always be willing to accept a lower payment rather than none at all.
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
Friday, January 22, 2016
Negotiating a Truce
Blogger Eric Barker (Barking Up the Wrong Tree) says we all need to know how to persuade people. He asked the NYPD hostage negotiators about how they do it. As I read his blog, I found a lot of similarities between a hostage situation and dealing with a PwLBD who is acting out. In both cases, emotions, not rational thinking, rule. We are also fans of Teepa Snow with her "Positive Approach" and of our own local dementia expert, Geri Hall, who has been working with dementia caregivers for well over 40 years. Here are the four NYPD "secrets" from Eric adapted to address caregiver situations with some similar statements from our own gurus.
1. Know their hooks and buttons. Hooks are things your loved one likes. Caregivers often have a head start here because you usually have a good idea of these already. But to find out what is important at this moment,
2. Focus on the future. The PwLBD will likely be talking about the past...events that were perceived as painful. Once your loved one feels you are listening, try to turn the conversation to the here and now, and to the immediate future. Geri puts it this way: "Agree, apologize, promise to fix." The "agree" gets you on their side. The "apologize" maintains their dignity. Do it even if you aren't in the wrong! Just do it. Then the "promise to fix" puts you both into the future. Be careful not to make promises you can't deliver. Promise to "work at fixing" or "checking it out" rather than delivering the whole thing. Teepa suggests that you ask for their help in fixing the problem. Ask what do they think can be done.
3. Model the behavior you want. In this case, be calm and soothing. However, Teepa Snow suggests that first, you agree with the PwLBD, matching their level of anger and voicing what they might not have been able to say. THEN, take some deep breaths and get them to take deep breaths with you. And THEN, go into the calm, soothing routine. Trying to calm someone who doesn't feel you are "there" for them is often futile. When they feel you are "on their side" they don't have to be so angry and can allow themselves to take those deep calming breaths and relax.
4. Slow it down. Each step of this process should take a lot of time. You would probably like to just get it over with! But moving too fast leads to pressure and intensifies emotional decision making vs. rational decision making. This is true for anyone under stress. Add the difficulty that a PwLBD has with thinking in general and this is greatly increased.
View some of Teepa Snows wonderful videos: http://teepasnow.com/resources/teepa-tips-videos/
Read Eric Barkers fascinating blog: http://www.bakadesuyo.com/2015/11/hostage-negotiators/
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
1. Know their hooks and buttons. Hooks are things your loved one likes. Caregivers often have a head start here because you usually have a good idea of these already. But to find out what is important at this moment,
- Listen without judging. Take the time to understand not just the words, but the emotions behind the words. Listening means you are validating the person, not necessarily the story. Teepa also suggests you get on their level, and use eye contact.
- Show interest. The NYPD suggests that when a hostage holder makes "crazy talk", the negotiator say something like this: "Oh, that's really fascinating. I never heard it in quite that way before. Help me to understand. How did you come up with that?" Teepa Snow suggests that you ask person who is hallucinating to "tell me more" and ask specific questions about color, etc. Both examples show you are involved with the conversation.
- Suspend your ego. Put your own needs, wants, and opinions aside. Don't interrupt or try to correct, which will be perceived as judgmental. No-one likes to be judged, thus it will escalate the situation. This doesn't mean that you have to agree. It only means that you don't express your disagreement. Geri reminds us that they can't hear your concerns right now anyway. They are much to focused on their own issues and their own view of them.
2. Focus on the future. The PwLBD will likely be talking about the past...events that were perceived as painful. Once your loved one feels you are listening, try to turn the conversation to the here and now, and to the immediate future. Geri puts it this way: "Agree, apologize, promise to fix." The "agree" gets you on their side. The "apologize" maintains their dignity. Do it even if you aren't in the wrong! Just do it. Then the "promise to fix" puts you both into the future. Be careful not to make promises you can't deliver. Promise to "work at fixing" or "checking it out" rather than delivering the whole thing. Teepa suggests that you ask for their help in fixing the problem. Ask what do they think can be done.
3. Model the behavior you want. In this case, be calm and soothing. However, Teepa Snow suggests that first, you agree with the PwLBD, matching their level of anger and voicing what they might not have been able to say. THEN, take some deep breaths and get them to take deep breaths with you. And THEN, go into the calm, soothing routine. Trying to calm someone who doesn't feel you are "there" for them is often futile. When they feel you are "on their side" they don't have to be so angry and can allow themselves to take those deep calming breaths and relax.
4. Slow it down. Each step of this process should take a lot of time. You would probably like to just get it over with! But moving too fast leads to pressure and intensifies emotional decision making vs. rational decision making. This is true for anyone under stress. Add the difficulty that a PwLBD has with thinking in general and this is greatly increased.
- As the PwLBD begins to calm down, slow your own responses even more. Make sure you are both on the same page. A small spark could start the acting-out all over again!
- Be very clear about what is going to happen next. Make sure the PwLBD is happy with this and doesn't feel pressured. "OK, let's go to dinner and then I'll talk to the nurse about your purse. Are you all right with that?"
View some of Teepa Snows wonderful videos: http://teepasnow.com/resources/teepa-tips-videos/
Read Eric Barkers fascinating blog: http://www.bakadesuyo.com/2015/11/hostage-negotiators/
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
Friday, January 15, 2016
"I think I'm Getting Dementia Too!"
What dementia caregiver has not said or thought "I think I'm getting dementia too." When you feel this way, it is probably true that you ARE exhibiting signs of dementia. That doesn't mean you have it! What it does mean is that you are probably stressed, have been for some time, and need to take care of herself. Stress is a leading cause of reversible, temporary dementia. Or let's be gentler and call it temporary mild cognitive impairment.
No one thinks clearly when they are stressed. We are hardwired to react without thinking when we are stressed. That's the way the caveman escaped the saber-toothed tiger. He didn't stop to think about what to do; he just ran. The remedy is a break from caregiving...maybe five minutes locked in the bathroom to take some deep breaths, or maybe a whole week's vacation away from the loved one. Or, likely something in-between, hopefully on a regular basis, like a girl's afternoon out with friends.
Stress can make the PwLBD's dementia symptoms worse too. When the body has to deal with stress, then it the Lewy bodies are allowed "free reign" and symptoms increase. Stress does not cause LBD or make it progress faster, but it sure does make it more unpleasant! Anything you can do to keep stress at a minimum will decrease symptoms and increase quality of life. One of the main stressors is the stress level of the caregiver and so we are back to how to reduce caregiver stress. Other reasons are environmental and emotional. In most cases, find the stressor, remove or decrease it and the stress will also decrease.
There some other causes of reversible dementias. These are usually easier to diagnose than the progressive ones like LBD or Alzheimer's because they have specific causes. Some are very serious, such as brain tumors, and may require surgery. Others are easier to fix--these are the one this blog and the next will be addressing.
Vitamin D deficiency. I discussed this in last week's blog. It is very common with the elderly and can cause a lack of energy and possibly cognition losses.
Dehydration. When there isn't enough fluid in your system to allow blood to circulate freely, adequate oxygen doesn't get to the brain or other organs. This is more likely with the PwLBD than with the caregiver, but it can happen. Signs of possible dehydration include bad breath, headaches, dry skin and a craving for sweets. Signs of good hydration: a) urine that is a clear, very light yellow, and b) skin on the back of the hand that quickly bounces back after being pinched, pulled up and dropped. To improve water intake, choose plain water over fizzy drinks or colas. Drink smoothies and fill up on vegetables and fruits instead of dry carby foods like crackers and pastas.
Sleep deprivation. Seniors are also more likely to be wakened up with bathroom breaks and sleep apnea spells. It can be especially serious for the 24/7 caregiver who is up night after night with a restless loved one. Signs of sleep deprivation are hunger and weight gain, impulsivity and being overly emotional, poor memory and decision making skills, poor motor skills--and a susceptibility for illnesses. (Very similar to signs of stress!) The average person needs about seven hours of sleep a night. If you aren't getting this, try to catch a nap during the day when your loved one is napping. To allow easier sleep, use pressure pads for beds and chairs to warn you about when a loved one is getting up.
If none of these fit but you still feel "dementia-like," next week's blog will be about a few more reasons for feeling less alert.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
No one thinks clearly when they are stressed. We are hardwired to react without thinking when we are stressed. That's the way the caveman escaped the saber-toothed tiger. He didn't stop to think about what to do; he just ran. The remedy is a break from caregiving...maybe five minutes locked in the bathroom to take some deep breaths, or maybe a whole week's vacation away from the loved one. Or, likely something in-between, hopefully on a regular basis, like a girl's afternoon out with friends.
Stress can make the PwLBD's dementia symptoms worse too. When the body has to deal with stress, then it the Lewy bodies are allowed "free reign" and symptoms increase. Stress does not cause LBD or make it progress faster, but it sure does make it more unpleasant! Anything you can do to keep stress at a minimum will decrease symptoms and increase quality of life. One of the main stressors is the stress level of the caregiver and so we are back to how to reduce caregiver stress. Other reasons are environmental and emotional. In most cases, find the stressor, remove or decrease it and the stress will also decrease.
There some other causes of reversible dementias. These are usually easier to diagnose than the progressive ones like LBD or Alzheimer's because they have specific causes. Some are very serious, such as brain tumors, and may require surgery. Others are easier to fix--these are the one this blog and the next will be addressing.
Vitamin D deficiency. I discussed this in last week's blog. It is very common with the elderly and can cause a lack of energy and possibly cognition losses.
Dehydration. When there isn't enough fluid in your system to allow blood to circulate freely, adequate oxygen doesn't get to the brain or other organs. This is more likely with the PwLBD than with the caregiver, but it can happen. Signs of possible dehydration include bad breath, headaches, dry skin and a craving for sweets. Signs of good hydration: a) urine that is a clear, very light yellow, and b) skin on the back of the hand that quickly bounces back after being pinched, pulled up and dropped. To improve water intake, choose plain water over fizzy drinks or colas. Drink smoothies and fill up on vegetables and fruits instead of dry carby foods like crackers and pastas.
Sleep deprivation. Seniors are also more likely to be wakened up with bathroom breaks and sleep apnea spells. It can be especially serious for the 24/7 caregiver who is up night after night with a restless loved one. Signs of sleep deprivation are hunger and weight gain, impulsivity and being overly emotional, poor memory and decision making skills, poor motor skills--and a susceptibility for illnesses. (Very similar to signs of stress!) The average person needs about seven hours of sleep a night. If you aren't getting this, try to catch a nap during the day when your loved one is napping. To allow easier sleep, use pressure pads for beds and chairs to warn you about when a loved one is getting up.
If none of these fit but you still feel "dementia-like," next week's blog will be about a few more reasons for feeling less alert.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
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