We are taking this week off to enjoy the holidays. Today we will be spending with family and look forward to a day filled with joy, happiness and good food! We wish the same to you. After the New Year, we have a couple of blogs about the history of the Lewy body disorders planned. If you have anything you’d like to know more about, just send us a not…or write a comment.
We want to take this opportunity at the end of the year to thank all of our readers and supporters. Without you we couldn't have written our books, or these blogs, or shared in LBD and PD meetings or presented programs about LBD in its various forms. Your stories and experiences give our work heart and depth. Your questions keep us researching and continuing to learn so that we can pass it all on.
Thank you one and all!
Helen and Jim Whitworth
Friday, December 26, 2014
Friday, December 19, 2014
We Are In This Together
As the holidays show up, the losses we as caregivers experience are often brought to the forefront. No longer can we celebrate the way we used to. Everything has to be adjusted to the needs of our loved ones. But we still have the togetherness. It may be different now too, but it is even important.
As dementia develops, it is like going into a long dark tunnel. Think about how it must feel to be heading down this tunnel that gets darker as you travel. Having someone to cling to makes the journey much less scary. You may have had a good relationship before, but your loved one was probably able to envision himself operating on his own as well. Now that may not be possible. This leads to more feelings of helplessness. Now, your presence becomes crucial. And as it does, so does the fear that you will leave. That you will not want to be tied down to the helpless old wreck that they feel they have become. This in turn leads to excessive clinginess and even to delusions of infidelity.
Right from the first, talk about this as a journey you both are on. Talk about how you are in this together, and how you are in this for the long run. Remember to put everything in positive tense. For instance, say, “I’m staying right here” not “I will never leave you.” As dementia advances, the negative adjectives get lost and he may hear, “I will leave you.”
Right from the first, develop routines and rituals. Pat Snyder author of Treasures in the Darkness) tells how when her husband John was diagnosed with LBD, she told him, “We are in this together no matter what. I want you to always remember that you have TWO BRAINS now---yours and mine. I’ll act as your second brain when your first brain is feeling sick in some way. That’s my job. Your job is to trust my brain.” Because she started this early, John was able to accept the idea. Because Pat used it often, as when he saw something scary that wasn’t really there or when he became confused, John remembered and the technique helped him through many rough spots. For example, when he recently became agitated with their paid caregiver, she reminded him that he’d just had a tooth pulled and his medicine was making him cranky. She said, “You need to use my brain right now and trust her to help you. Lewy has made you ornery!" It made him laugh and he was able then to cooperate more with the caregiver.
You can also adapt the rituals and routines you already have. For example, before Morris became ill, he and Judy had the habit of leaving notes to each other. She kept this up even after he couldn’t read. Even early on, it helped. Judy could leave Morris alone while she ran errands but his time sense was going and he’d get anxious and start calling her cell in about a half an hour. She found that if she left him a note, he’d be fine for a couple of hours. She was there, with him, in that note. Later, when he was in a memory care unit, she’s stick a note over his heart before she went home and it had the same effect. He would pat the note, nod and smile. Again, Judy was “there” with him and he was peaceful.
For more about working with dementia, read our books
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders
As dementia develops, it is like going into a long dark tunnel. Think about how it must feel to be heading down this tunnel that gets darker as you travel. Having someone to cling to makes the journey much less scary. You may have had a good relationship before, but your loved one was probably able to envision himself operating on his own as well. Now that may not be possible. This leads to more feelings of helplessness. Now, your presence becomes crucial. And as it does, so does the fear that you will leave. That you will not want to be tied down to the helpless old wreck that they feel they have become. This in turn leads to excessive clinginess and even to delusions of infidelity.
Right from the first, talk about this as a journey you both are on. Talk about how you are in this together, and how you are in this for the long run. Remember to put everything in positive tense. For instance, say, “I’m staying right here” not “I will never leave you.” As dementia advances, the negative adjectives get lost and he may hear, “I will leave you.”
Right from the first, develop routines and rituals. Pat Snyder author of Treasures in the Darkness) tells how when her husband John was diagnosed with LBD, she told him, “We are in this together no matter what. I want you to always remember that you have TWO BRAINS now---yours and mine. I’ll act as your second brain when your first brain is feeling sick in some way. That’s my job. Your job is to trust my brain.” Because she started this early, John was able to accept the idea. Because Pat used it often, as when he saw something scary that wasn’t really there or when he became confused, John remembered and the technique helped him through many rough spots. For example, when he recently became agitated with their paid caregiver, she reminded him that he’d just had a tooth pulled and his medicine was making him cranky. She said, “You need to use my brain right now and trust her to help you. Lewy has made you ornery!" It made him laugh and he was able then to cooperate more with the caregiver.
You can also adapt the rituals and routines you already have. For example, before Morris became ill, he and Judy had the habit of leaving notes to each other. She kept this up even after he couldn’t read. Even early on, it helped. Judy could leave Morris alone while she ran errands but his time sense was going and he’d get anxious and start calling her cell in about a half an hour. She found that if she left him a note, he’d be fine for a couple of hours. She was there, with him, in that note. Later, when he was in a memory care unit, she’s stick a note over his heart before she went home and it had the same effect. He would pat the note, nod and smile. Again, Judy was “there” with him and he was peaceful.
For more about working with dementia, read our books
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders
Friday, December 12, 2014
Stressful Visitors During the Holidays
The holidays are a time when we often have more visitors than usual. Visitors we are glad, even excited to see. Family, dear friends, neighbors. We love them all and are glad they take the time to come. BUT…yes, there is always a but. We hear story after story of crises that needn’t have happened, of what appears to be total lack of consideration in what the visitors bring into the home of someone with LBD.
Janice told how a close friend brought an unruly dog to a holiday gathering with, “She’s just a puppy. She’ll outgrow her rambunctiousness.” Roberta shared a similar experience with an in-law who brought a noisy, active two-year old and ignored his loud squeals and shouts, saying, “Happy sounds don’t bother anyone.” People living with active pets and children become immune to the stress they can cause for people who are not used to such behavior and noise. And they seldom have a clue how easy it is to cause stress in someone with LBD and how damaging that stress can be.
Beverly’s adult grandchild showed up with her flu-ridden husband, saying, “We didn’t want to miss the party. Larry will be careful not to breath on anyone.” While people usually understand that a family gathering isn’t the place for a contagious disease, they likely aren’t aware of the LBD’s toll on a person’s immune system and the resultant super high susceptibility to infections.
These visitors aren't being purposely inconsiderate. It's just that people without daily exposure to our loved ones just don’t understand the importance of maintaining a safe, peaceful environment. In addition, they are probably operating on what a loved one used to be like, or what he was like the last time they visited, maybe six months ago. Caregivers know how things change; how what a loved one could tolerate a few months ago is not what they can tolerate now. But visitors don’t. And then, of course, there’s Showtime, that leads them to “know” that Grandpa is obviously not as bad as you say he is.
They have to be told—and told directly. Like it or not, this is the caregiver’s job. Speak up. Be clear. Don’t pull your punches. Don’t hint around and expect them to read between the lines. They really don’t get it. Tell them what you want in clear, direct sentences.
Start with a positive: “We want to see you” or “We love the baby” or ….
Then explain the problem: “BUT your pet/child/etc is too active/loud/contagious….”
Explain the difference between them and someone not used to the behavior: “I know this behavior/condition isn’t a problem for you, but we aren’t used to it and it is stressful for us, and especially for Henry. LBD makes his stress/ immunity tolerance very low and with all the people here, he’s already nearly maxed out.”
Give a clear directive: Please either have better control of your pet/child/etc. or don’t bring it when so many people are here.” Or “Please wait until the disease is not contagious…”
Finish with something to soften it so that you will be heard: “Why don’t you bring the baby—or the puppy—over in a couple of days, so Henry can enjoy him without a lot of people around?” or “Can you come back when your husband is feeling better? We really do want to visit with you.”
For you the problem may be something else. Perhaps your family likes to argue and this upsets your loved one where once, he’d have been right there, putting in his two bits. Or maybe, it’s the food they bring—food your loved one loves but is now forbidden for some reason. Or …. Well, you can fill in the blanks. The problem and the solution remain the same. You know what is stressful to your love one and it is your responsibility to make sure your visitors understand his limits.
Hopefully, you can do this BEFORE they show up. You will have a happier, more peaceful time if you do. If not, do it as soon as you see the problem. Don’t expect it to get better. You will only get more stressed—and telegraph that stress to your loved one. Set the guidelines for a peaceful gathering, insist that they be followed and you will be able to relax and enjoy yourself. That’s important too, you know!
For information about Lewy body disorders, read our books:
Janice told how a close friend brought an unruly dog to a holiday gathering with, “She’s just a puppy. She’ll outgrow her rambunctiousness.” Roberta shared a similar experience with an in-law who brought a noisy, active two-year old and ignored his loud squeals and shouts, saying, “Happy sounds don’t bother anyone.” People living with active pets and children become immune to the stress they can cause for people who are not used to such behavior and noise. And they seldom have a clue how easy it is to cause stress in someone with LBD and how damaging that stress can be.
Beverly’s adult grandchild showed up with her flu-ridden husband, saying, “We didn’t want to miss the party. Larry will be careful not to breath on anyone.” While people usually understand that a family gathering isn’t the place for a contagious disease, they likely aren’t aware of the LBD’s toll on a person’s immune system and the resultant super high susceptibility to infections.
These visitors aren't being purposely inconsiderate. It's just that people without daily exposure to our loved ones just don’t understand the importance of maintaining a safe, peaceful environment. In addition, they are probably operating on what a loved one used to be like, or what he was like the last time they visited, maybe six months ago. Caregivers know how things change; how what a loved one could tolerate a few months ago is not what they can tolerate now. But visitors don’t. And then, of course, there’s Showtime, that leads them to “know” that Grandpa is obviously not as bad as you say he is.
They have to be told—and told directly. Like it or not, this is the caregiver’s job. Speak up. Be clear. Don’t pull your punches. Don’t hint around and expect them to read between the lines. They really don’t get it. Tell them what you want in clear, direct sentences.
Start with a positive: “We want to see you” or “We love the baby” or ….
Then explain the problem: “BUT your pet/child/etc is too active/loud/contagious….”
Explain the difference between them and someone not used to the behavior: “I know this behavior/condition isn’t a problem for you, but we aren’t used to it and it is stressful for us, and especially for Henry. LBD makes his stress/ immunity tolerance very low and with all the people here, he’s already nearly maxed out.”
Give a clear directive: Please either have better control of your pet/child/etc. or don’t bring it when so many people are here.” Or “Please wait until the disease is not contagious…”
Finish with something to soften it so that you will be heard: “Why don’t you bring the baby—or the puppy—over in a couple of days, so Henry can enjoy him without a lot of people around?” or “Can you come back when your husband is feeling better? We really do want to visit with you.”
For you the problem may be something else. Perhaps your family likes to argue and this upsets your loved one where once, he’d have been right there, putting in his two bits. Or maybe, it’s the food they bring—food your loved one loves but is now forbidden for some reason. Or …. Well, you can fill in the blanks. The problem and the solution remain the same. You know what is stressful to your love one and it is your responsibility to make sure your visitors understand his limits.
Hopefully, you can do this BEFORE they show up. You will have a happier, more peaceful time if you do. If not, do it as soon as you see the problem. Don’t expect it to get better. You will only get more stressed—and telegraph that stress to your loved one. Set the guidelines for a peaceful gathering, insist that they be followed and you will be able to relax and enjoy yourself. That’s important too, you know!
For information about Lewy body disorders, read our books:
- A Caregivers’ Guide to Lewy Body Dementia
- Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders
Friday, December 5, 2014
Coconut Oil: Is It Wonderful?...Or Is It NOT?
A lot of people believe coconut oil is very nutritious and that it can help dementia. But what about shredded coconut? That's something we use a lot this time of year to add flavor and fiber to many holiday foods. Well, it isn't exactly unhealthy, but it shouldn't be a regular part of your diet. It does supply some key vitamins and minerals. However, its high fat and sugar content greatly decreases its nutritional value. You can use unsweetened shredded coconut to improve nutritional value but the fat content remains. See the discussion below about the fat in coconut oil and whether it is nutritious or not. There is no evidence that it helps dementia.
Coconut oil. We know that coconut oil is nutritious in many ways although the jury is still out about whether it is helpful with dementia. Last year, the 10/14/13 blog was ambivalent. There's still very little supportive research although there are many glowing personal reports from a wide variety of sources. We do know that it is wonderful on the skin. But what about as nutrition?
Many people believe that coconut oil has attributes that make it heart-healthy, and that it may even be useful for treating infections. Others swear that it has a definite, positive effect on cognition. Some advocates believe that when transformed by the liver into ketones, it may even restore and renew neuron and nerve function in the brain after damage has set in. That is about as close to a cure as we’ve heard—if it works.
As for scientific proof of these claims, the strongest appears to be a 2012 study with results that showed that ingesting coconut oil provided significant short term benefits to dementia patients. From this, we can deduce that yes, coconut oil apparently does have a positive, if temporary effect. That is, like a drug that treats symptoms but doesn’t cure, it provides a benefit only as long as it is in the system.
So far there is no scientific proof that it can do anything permanent like renewing neurons. We should learn more in September, 2015, when the National Institute of Aging plans to publishes the results of their clinical trial to look at the benefits of coconut oil in people with mild to moderate Alzheimer's disease.
However, the down side is that coconut oil is high in calories and is categorized as a saturated fat, the kind that isn’t heart healthy at all. Advocates say that the way coconut oil is metabolized makes the calories less important. They also say that the oil acts more like a carbohydrate than a saturated fat.
Nevertheless, until further research changes what we know, nutritionists remind us that while healthy fats should make up about 30% of your total intake, saturated fats (including coconut) should be limited to no more than 10%--or about two tablespoons a day. Advocates suggest that you can use it to replace butter on toast or popcorn, use it as shortening in cooking, or add it to smoothies.
Omega-3 fatty acid update: The 10/4/13 blog reported that foods containing omega-3 fatty acids have a positive effect on dementia but that the use of supplements is questionable. This remains true. There is more emphasis on getting enough fats in our diets—healthy fat, that is. Human brains are at least 60% healthy fats, which must continually be replenished for proper functioning. As with essential vitamins, our bodies cannot manufacture these nutrients; they must be obtained from diet. We have been so trained to watch our fat intake that we often neglect to ingest adequate amounts of the fats that our brains need.
A Dutch study found that a diet high in fat seems to postpone the aging of the brain. Olive, canola and possibly, coconut oil, fatty fish, flax and pumpkin seeds and walnuts are examples of foods containing healthy fats. You can find a longer list here. It would probably behoove all of us to add more of these to our diet. (Notice that coconut oil is included in the list of “bad fats” on this list. Again, it IS a saturated fat, but has other attributes that makes it healthier than other saturated fats, and perhaps we will eventually find that it is as healthy as “good fats.”
Coconut oil. We know that coconut oil is nutritious in many ways although the jury is still out about whether it is helpful with dementia. Last year, the 10/14/13 blog was ambivalent. There's still very little supportive research although there are many glowing personal reports from a wide variety of sources. We do know that it is wonderful on the skin. But what about as nutrition?
Many people believe that coconut oil has attributes that make it heart-healthy, and that it may even be useful for treating infections. Others swear that it has a definite, positive effect on cognition. Some advocates believe that when transformed by the liver into ketones, it may even restore and renew neuron and nerve function in the brain after damage has set in. That is about as close to a cure as we’ve heard—if it works.
As for scientific proof of these claims, the strongest appears to be a 2012 study with results that showed that ingesting coconut oil provided significant short term benefits to dementia patients. From this, we can deduce that yes, coconut oil apparently does have a positive, if temporary effect. That is, like a drug that treats symptoms but doesn’t cure, it provides a benefit only as long as it is in the system.
So far there is no scientific proof that it can do anything permanent like renewing neurons. We should learn more in September, 2015, when the National Institute of Aging plans to publishes the results of their clinical trial to look at the benefits of coconut oil in people with mild to moderate Alzheimer's disease.
However, the down side is that coconut oil is high in calories and is categorized as a saturated fat, the kind that isn’t heart healthy at all. Advocates say that the way coconut oil is metabolized makes the calories less important. They also say that the oil acts more like a carbohydrate than a saturated fat.
Nevertheless, until further research changes what we know, nutritionists remind us that while healthy fats should make up about 30% of your total intake, saturated fats (including coconut) should be limited to no more than 10%--or about two tablespoons a day. Advocates suggest that you can use it to replace butter on toast or popcorn, use it as shortening in cooking, or add it to smoothies.
Omega-3 fatty acid update: The 10/4/13 blog reported that foods containing omega-3 fatty acids have a positive effect on dementia but that the use of supplements is questionable. This remains true. There is more emphasis on getting enough fats in our diets—healthy fat, that is. Human brains are at least 60% healthy fats, which must continually be replenished for proper functioning. As with essential vitamins, our bodies cannot manufacture these nutrients; they must be obtained from diet. We have been so trained to watch our fat intake that we often neglect to ingest adequate amounts of the fats that our brains need.
A Dutch study found that a diet high in fat seems to postpone the aging of the brain. Olive, canola and possibly, coconut oil, fatty fish, flax and pumpkin seeds and walnuts are examples of foods containing healthy fats. You can find a longer list here. It would probably behoove all of us to add more of these to our diet. (Notice that coconut oil is included in the list of “bad fats” on this list. Again, it IS a saturated fat, but has other attributes that makes it healthier than other saturated fats, and perhaps we will eventually find that it is as healthy as “good fats.”
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