In a recent support group the question about what to tell a loved one after they've been diagnosed?
What should I say? Should I tell them at all? Jerry doesn't remember from one minute to the next. Does it do any good to tell him anyway? -- Linda
The group consensus was that yes, Linda should tell Jerry, but only as much as he needed to know at the moment. "You have a brain disease," they suggested saying. Don't go into detail; that will simply confuse them. "Personify the disease," another said, "Call it Lewy, and then when they have problems, like when they stumble, or can't do something that they used to be able to do, blame "Lewy." They know that something is wrong and they need something to blame instead of themselves.
More comments:
When Ken was diagnosed, Ken took it better than I did! He hadn't felt "right" for a while and now he had an answer to why. He made him feel better about himself. It wasn't him, it was the disease.
My dad loves to joke. He always has. He'll say things like, "What did you say your name was? I can't remember." Then he'll laugh, because he actually does remember--this time.
My mother-in-law has Alzheimer's. She will repeat questions and then when she sees that my husband is getting impatient, she shrugs and says, "I have de-men-she-ia, you know."
When Brian flies off the handle and accuses me of awful things, he sometimes remembers later and feels really bad about it. I tell him it's OK. I know it was Lewy talking, not him.
Danny's hallucinations about bugs feel very real and scary to him. When I tell him that it's Lewy making trouble again, it calms him down. He still understands that the bugs aren't real, but I know that won't last. Even now, it helps to physically sweep all those nasty bugs out the door.
Our experience is that people in general tend to lean one of two ways. The above group are among those who want to know more about an unwanted diagnosis, or are at least willing to accept it. The next group are among those who tend to avoid the difficulties in their lives such as an unwanted diagnosis:
My mom won't accept that there is anything wrong with her. When I tell her that it's Lewy making her angry, she gets madder. "It isn't Lewy, it's you," she tells me. She's fine. I'm the one with the problem.
My wife was a professional cook. When she started making mistakes, she hid them from me but I figured out that something was wrong when I kept getting burn offerings for meals. Then I found a burned skillet in the garbage and I knew we had to go for help.
Carl still thinks he can drive. "I'm fine, he tells me. I've never had an accident. I don't know why you think I might now." I thought things would change because his driver's license was up for renewal. In our state, that means that at his age, he has to take a driving test and I was sure he'd fail. I've ridden with him. He really isn't safe! But that old Showtime kicked in and he did fine!
An almost universal dementia symptom helps this last group maintain their denial. Dementia gradually takes away a person's ability to judge how much they've changed. If a person is denial-prone, they likely won't see those first changes, the ones they could have recognized if their denial hadn't prevented it. But then, as the dementia increases, they can't see the changes. Thus, these people don't have the need for Lewy as their fall-guy. They are fine, thank you. You are the one with the problem!
To deal with a loved one's denial, use the same techniques you use to deal with other delusions: patience, empathy, acceptance and redirection. But no one said this was easy.
Take advantage of time-outs when you are frustrated. A few minutes out of their sight will give you a chance to regroup--and when you come back, they will probably have forgotten the whole episode.
Sometimes, you don't have the freedom to take your time. In situations like Carl's dangerous driving, look for someone else besides you to be the "bad guy." You have to live with your loved one; their doctor or a married child, for example, doesn't. (See these 3/24/17 and 3/27/17 for more about this.
Next week will finally start that series on support groups.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff
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.
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Friday, February 8, 2019
Friday, January 25, 2019
New to LBD, Pt. 3. After the Diagnosis
Ok, we have a diagnosis and it sure sounds like what Ben has been experiencing, but what do we do now? I'm just so full of questions. The doctor says it's incurable. Is that really true? If so, can we slow this down? The doctor says the medicine she prescribed will probably stop some of Ben's odd behaviors. We've always been advocates of alternative options to heath care though. Are there any alternative options we can try? Will they interfere with his drugs? -- Emily
Emily is showing the normal confusion a person tends to feel with news like hers. All of a sudden, she is seeing her life change and seeing that what used to be a partnership is going to gradually morph into a lot more responsibility for her. Like many in her position, she is less angry or resentful than she is worried that she won't do it right. And that's a setup for guilt.
Accept that you are human. Emily's first step is to accept that she won't get everything right...but she will do the best she can and accept that she isn't perfect. Ah yes, easy to say, but not so easy to do! And that's the next step.
Find a support group! The people in a good support group can answer most of her questions. Their stories of their own experiences and dilemmas how they dealt with them can give her a feeling of belonging--they've been where she is now. And their understanding will give her a feeling of security that she may not find if she tries to do this job alone. (See New to Lewy, Pt 1 for a little more about groups.)
Use your resources. If you were referred to a nurse practitioner or social worker, be sure to take advantage of this. These professionals are there to help you find your way through all the non-medical issues that come up, from ideas on how to deal with those odd behaviors to what it means to be a person's advocate to the need for self-care and much, much more. They can also help you deal with any denial you may be feeling. Denial is a common part of the process towards accepting and then dealing with a life changing diagnosis. If you weren't referred, ask for a referral! Oh, yes, if you haven't found a support group yet, they can help you with that too!
Do your homework. As an advocate, you need to educate yourself about the disease.
When my first wife, Annie, started having LBD symptoms, I was an electrical engineer and all that medical stuff was just so much mumbo jumbo. But I was concerned and I stuck with it. I found articles that used plain, understandable words that described Annie's symptoms. I took this information to the doctor and asked for more clarification. -- Jim Whitworth
You can do what Jim did. Our books, shown below, are are a great start. They all written with the stressed, often non-medical care partner in mind, as is our website. The National Institute on Aging also offers a free 40 page book called Lewy Body Dementia: Information for Patients, Families, and Professionals. Of course, the LBDA website is also a great help. Another good resource is Timothy Hudson's Learning to Live with Lewy Body Dementia. In fact, check out Timothy's list of other resources.
Learn about alternative drug options. Emily asked about alternative therapies. This is a valid question. The doctor will likely suggest some medical treatment. However, a knowledgeable doctor will also recommend trying to manage behavioral symptoms with non-drug alternatives before using drugs. That's because the most behavior management drugs are likely to trigger LBD's drug sensitivities. Even when you do use drugs, adding non-drug options usually means you need smaller doses to get the same results. You can find out about non-drug options on our website, or in our books, listed below.
Next week is about dealing with the denial that often follows a life changing diagnosis.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff
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.
Emily is showing the normal confusion a person tends to feel with news like hers. All of a sudden, she is seeing her life change and seeing that what used to be a partnership is going to gradually morph into a lot more responsibility for her. Like many in her position, she is less angry or resentful than she is worried that she won't do it right. And that's a setup for guilt.
Accept that you are human. Emily's first step is to accept that she won't get everything right...but she will do the best she can and accept that she isn't perfect. Ah yes, easy to say, but not so easy to do! And that's the next step.
Find a support group! The people in a good support group can answer most of her questions. Their stories of their own experiences and dilemmas how they dealt with them can give her a feeling of belonging--they've been where she is now. And their understanding will give her a feeling of security that she may not find if she tries to do this job alone. (See New to Lewy, Pt 1 for a little more about groups.)
Use your resources. If you were referred to a nurse practitioner or social worker, be sure to take advantage of this. These professionals are there to help you find your way through all the non-medical issues that come up, from ideas on how to deal with those odd behaviors to what it means to be a person's advocate to the need for self-care and much, much more. They can also help you deal with any denial you may be feeling. Denial is a common part of the process towards accepting and then dealing with a life changing diagnosis. If you weren't referred, ask for a referral! Oh, yes, if you haven't found a support group yet, they can help you with that too!
Do your homework. As an advocate, you need to educate yourself about the disease.
When my first wife, Annie, started having LBD symptoms, I was an electrical engineer and all that medical stuff was just so much mumbo jumbo. But I was concerned and I stuck with it. I found articles that used plain, understandable words that described Annie's symptoms. I took this information to the doctor and asked for more clarification. -- Jim Whitworth
You can do what Jim did. Our books, shown below, are are a great start. They all written with the stressed, often non-medical care partner in mind, as is our website. The National Institute on Aging also offers a free 40 page book called Lewy Body Dementia: Information for Patients, Families, and Professionals. Of course, the LBDA website is also a great help. Another good resource is Timothy Hudson's Learning to Live with Lewy Body Dementia. In fact, check out Timothy's list of other resources.
Learn about alternative drug options. Emily asked about alternative therapies. This is a valid question. The doctor will likely suggest some medical treatment. However, a knowledgeable doctor will also recommend trying to manage behavioral symptoms with non-drug alternatives before using drugs. That's because the most behavior management drugs are likely to trigger LBD's drug sensitivities. Even when you do use drugs, adding non-drug options usually means you need smaller doses to get the same results. You can find out about non-drug options on our website, or in our books, listed below.
Next week is about dealing with the denial that often follows a life changing diagnosis.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff
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.
Friday, January 18, 2019
New to Lewy, Pt. 2. The Diagnosis
Last week was about the behaviors that Ben displayed that instigated his visit to a doctor and the doctor's subsequent diagnosis of LBD. However, his wife, Emily, is having difficulty accepting the diagnosis.
When Ben's doctor diagnosed him with LBD, he was relieved and willing to accept what the doctor said. "I know I've been acting different and now I know why," he told Emily. But Emily was still worried. "I can't believe that Ben has dementia," she said. "Even after the doctor explained the differences, I still can't get my mind around the idea that he has an incurable disease that is going to disrupt our lives. I had hoped for some medication that would cure Ben of his delusions. I can deal with what the doctor called Active Dreams and even the "little people" he sees, but those delusions were making my sweet, loving husband ornery! (See last week's blog for a longer description of Ben's symptoms). Dr. Kennedy didn't do any tests. She just diagnosed him mainly based on my reports. Maybe she's wrong. How would I know? -- Emily
Emily's question can be broken up into several parts:
How can you judge accuracy of your doctor's diagnosis?
Do your homework. If you recognized symptoms that led you to believe your loved one might have LBD before you saw a doctor, read the following articles. They will give you a head start on the questions to ask. (Or read them when you get home from a doctor's visit where an unexpected LBD diagnosis was suggested. They will still give you a lot of insight about what to do next.):
Finding a Doctor to Diagnose and Treat LBD. The LBDA is always a great source of caregiver information.
Get an Accurate Lewy Body Dementia Diagnosis. Tim Hudson always has good, well thought-out information.
What Doctors Should Ask Patients to Recognize Lewy Body Dementia This will help you know how LBD-savvy the doctor is.
Ask questions. Besides knowing what the doctor should ask, there are questions that you should ask too. Don't be afraid to ask about the doctor's expertise with LBD. Has he/she had any training about it specifically--not just dementia, but LBD? How many people with LBD have they diagnosed in the past? How many are they treating now? Next, notice the questions the doctor asks. Are they similar to the ones in the above article?
Expect a referral for support. A doctor well versed in the issues around LBD knows that their patients and family need much more than medical treatment. Expect a referral to a nurse practitioner or social worker who specializes in this support. If it isn't offered ask and if it isn't available, consider it as one sign that perhaps this doctor isn't the one you want to see for this issue.
Don't do this alone. There are a multitude of reasons for finding and utilizing a support group. One of the first is to help you find and recognize a LBD-savvy doctor, and then to know how to deal with this life-changing diagnosis. Find a list of local groups on the LBDA Support Group page. The LBDA also has a list of online groups and so check them out too. Start with these but there are many more. Jim's favorite is Caring Spouses, It is limited to spouses but there are many others. Actually support groups are so important that they deserve a whole series of blogs and eventually there will be. In the meantime, the LBDA lists and this article in Lisa Cook's Lewy Warriors blog can get you started.
Consider a second opinion. Even if you are fairly comfortable with your doctor's diagnosis, a second opinion is often a good idea. In Ben and Emily's case, she needs it to help her deal with the denial she is feeling...the resistance to the idea that their lives will be changing due to Ben's diagnosis. Also, if your first diagnosis was by a family physician, getting a second opinion from a specialist is a good idea. A good family physician can identify a multitude of warning signs and knows when to refer.
To find the right person for your referral, you will need to know what your insurance allows. (My doctor's office staff does this research for me. Your's may too!) And then of those choices, who does your family doctor recommend and why. If you have a choice, check with others in your support group. Who do the they recommend? Once you choose someone, ask them the same questions you ask the original doctor and follow the recommendations in the above articles as well.
If you are still uncomfortable with a diagnosis...if for instance, it doesn't seem to fit the symptoms that your loved one has, don't be shy about asking for a third opinion! The statistics show that people usually see at least three doctors before they are diagnosed with LBD. This makes Emily and Ben's experience unusual. He was diagnosed with LBD right away. This may not be the case for you. Conversely, your loved one may be diagnosed with LBD but not really have it. As it becomes more well known, its many and varied symptoms can make it a kind of catch-all diagnosis. As your loved one's advocate, part of your job is to evaluate each diagnosis against what you already know about your loved one and seeing if it fits. If you don't think it does, ask for yet another diagnosis!
One last warning. When asking for another diagnosis, where are you emotionally? Is it possible that the problem is with you and not the diagnosis? Are you are in denial, as Emily was, and having difficulty accepting a diagnosis that does actually fit? Take a deep breath and check this out before going further!
Next week's blog is about what happens after the diagnosis.
For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's & Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding a Roller Coaster with Lewy Body Dementia: A Manual for Staff
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.
When Ben's doctor diagnosed him with LBD, he was relieved and willing to accept what the doctor said. "I know I've been acting different and now I know why," he told Emily. But Emily was still worried. "I can't believe that Ben has dementia," she said. "Even after the doctor explained the differences, I still can't get my mind around the idea that he has an incurable disease that is going to disrupt our lives. I had hoped for some medication that would cure Ben of his delusions. I can deal with what the doctor called Active Dreams and even the "little people" he sees, but those delusions were making my sweet, loving husband ornery! (See last week's blog for a longer description of Ben's symptoms). Dr. Kennedy didn't do any tests. She just diagnosed him mainly based on my reports. Maybe she's wrong. How would I know? -- Emily
Emily's question can be broken up into several parts:
How can you judge accuracy of your doctor's diagnosis?
Do your homework. If you recognized symptoms that led you to believe your loved one might have LBD before you saw a doctor, read the following articles. They will give you a head start on the questions to ask. (Or read them when you get home from a doctor's visit where an unexpected LBD diagnosis was suggested. They will still give you a lot of insight about what to do next.):
Finding a Doctor to Diagnose and Treat LBD. The LBDA is always a great source of caregiver information.
Get an Accurate Lewy Body Dementia Diagnosis. Tim Hudson always has good, well thought-out information.
What Doctors Should Ask Patients to Recognize Lewy Body Dementia This will help you know how LBD-savvy the doctor is.
Ask questions. Besides knowing what the doctor should ask, there are questions that you should ask too. Don't be afraid to ask about the doctor's expertise with LBD. Has he/she had any training about it specifically--not just dementia, but LBD? How many people with LBD have they diagnosed in the past? How many are they treating now? Next, notice the questions the doctor asks. Are they similar to the ones in the above article?
Expect a referral for support. A doctor well versed in the issues around LBD knows that their patients and family need much more than medical treatment. Expect a referral to a nurse practitioner or social worker who specializes in this support. If it isn't offered ask and if it isn't available, consider it as one sign that perhaps this doctor isn't the one you want to see for this issue.
Don't do this alone. There are a multitude of reasons for finding and utilizing a support group. One of the first is to help you find and recognize a LBD-savvy doctor, and then to know how to deal with this life-changing diagnosis. Find a list of local groups on the LBDA Support Group page. The LBDA also has a list of online groups and so check them out too. Start with these but there are many more. Jim's favorite is Caring Spouses, It is limited to spouses but there are many others. Actually support groups are so important that they deserve a whole series of blogs and eventually there will be. In the meantime, the LBDA lists and this article in Lisa Cook's Lewy Warriors blog can get you started.
Consider a second opinion. Even if you are fairly comfortable with your doctor's diagnosis, a second opinion is often a good idea. In Ben and Emily's case, she needs it to help her deal with the denial she is feeling...the resistance to the idea that their lives will be changing due to Ben's diagnosis. Also, if your first diagnosis was by a family physician, getting a second opinion from a specialist is a good idea. A good family physician can identify a multitude of warning signs and knows when to refer.
To find the right person for your referral, you will need to know what your insurance allows. (My doctor's office staff does this research for me. Your's may too!) And then of those choices, who does your family doctor recommend and why. If you have a choice, check with others in your support group. Who do the they recommend? Once you choose someone, ask them the same questions you ask the original doctor and follow the recommendations in the above articles as well.
If you are still uncomfortable with a diagnosis...if for instance, it doesn't seem to fit the symptoms that your loved one has, don't be shy about asking for a third opinion! The statistics show that people usually see at least three doctors before they are diagnosed with LBD. This makes Emily and Ben's experience unusual. He was diagnosed with LBD right away. This may not be the case for you. Conversely, your loved one may be diagnosed with LBD but not really have it. As it becomes more well known, its many and varied symptoms can make it a kind of catch-all diagnosis. As your loved one's advocate, part of your job is to evaluate each diagnosis against what you already know about your loved one and seeing if it fits. If you don't think it does, ask for yet another diagnosis!
One last warning. When asking for another diagnosis, where are you emotionally? Is it possible that the problem is with you and not the diagnosis? Are you are in denial, as Emily was, and having difficulty accepting a diagnosis that does actually fit? Take a deep breath and check this out before going further!
Next week's blog is about what happens after the diagnosis.
For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's & Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding a Roller Coaster with Lewy Body Dementia: A Manual for Staff
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.
Friday, January 11, 2019
New to Lewy, Pt 1. Early Symptoms
Jim monitors several online LBD caregiver support groups. The following is the sort of post he often sees from newcomers:
I just learned that Ben has Lewy body dementia. He'd been doing some odd things for a while...thrashing around in bed, seeing little people that I couldn't see. We could live with that, but when he started arguing with our neighbors over imagined slights, I decided it was time to see a doctor. Ben has always been a guy with an even temper and a smile for everyone. This just wasn't like him. I finally got him to go see Dr. Kennedy. I'm sure glad I went with him! He was so normal, the doctor couldn't see much wrong with him. But when I started telling her what had been happening, Dr. Kennedy started nodding her head. She says that what's going on with Ben sounds a lot like this thing called Lewy body dementia, or LBD, as she calls it. That's what is making him act so odd.
Dementia? I thought dementia was forgetting things. Ben doesn't forget, he obsesses! But Dr. Kennedy told us that there's a lot more kinds of dementia than just the kind where people start out by forgetting. We left her office so confused! Ben seems relieved to have a name for his odd behavior but I'm still not sure. Dr. Kennedy just diagnosed it from what I reported about his odd behaviors. She didn't order any tests. When I asked about that she said there were some tests but they were awfully expensive and they wouldn't tell us much more than she could, just from his symptoms. She said that what Ben had wasn't curable, that it would get slowly worse. That's awful! Maybe he has something curable? How do we find out? - Emily
Emily's post generates a multitude of questions:
What are the symptoms that Ben's doctor used to diagnose his LBD? How did she decide it was LBD and not another type of dementia, or something that wasn't dementia at all?
Thrashing around in bed: When a person dreams, the brain normally switches off the ability to move. LBD interferes with this and the result is Active Dreams where a person physically acts out their dreams.
Seeing little people that Emily couldn't see: Seeing hallucinations early on is a definitive sign of LBD, vs. Alzheimer's where these show up much later in the progress of the disease.
Imagined slights: LBD affects the ability to think before it affects one's memory--another way it is different from Alzheimer's. This leads to delusions, based on emotions rather than fact. Since negative emotions are initially stronger than positive ones, delusions are often negative: imagined slights, rather than imagined complements--and a change from Ben's normal positivity.
Arguing with neighbors: Most dementias cause a loss of impulse control. Normally, a person might choose to laugh at or ignore a slight, especially if arguing might make further interaction difficult. However, without impulse control, Ben acts on what he feels without considering the consequences.
Fluctuating cognition: When Ben saw the doctor, he seems coherent and normal. She didn't see much in her office that signaled dementia. However, Emily's reports of his actions told a different story. This is another definitive sign of LBD, vs. Alzheimer's. While both tend to cause a person's cognitive abilities to wane over time, with LBD, there can be occasional upturns. When this happens in the presence of someone other than the care partner, and especially someone important to them, such as a doctor or a visiting family member, it is called "Showtime."
We aren't suggesting that you use this information to make your own diagnosis! A lot more goes into that besides recognizing a few symptoms, including knowing how to treat the illness. Instead, use it to recognize the need to see a doctor. If your loved one has been diagnosed with Alzheimer's and is displaying these symptoms, consider asking if they might also have LBD.
Drug sensitivity is a common LBD symptom that Emily didn't mention. This is also more common with LBD than with other dementias and so an accurate LBD diagnosis is important simply because of this. Some drugs that are used fairly often with other dementias can often trigger this sensitivity, causing more problems than they solve.
While you do need to get that diagnosis and listen carefully to what the doctor says, you should never follow a doctor's advice blindly. Ask questions while in the doctor's office and do some reading about it when you get home. You are your loved one's advocate. That means that you need to understand why the treatment is recommended and what it is supposed to do...and of course, the possible side effects that you should look for.
You also have to be able to trust the doctor, which means you need to do your homework there too. Not all doctors are well versed in working with LBD. This could easily include your family practitioner. However, they likely know someone in your community to whom they can refer you, for a second, more educated, opinion.
Next week's blog will be about learning how to judge the accuracy of your doctor's diagnosis and getting a second opinion.
For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.
I just learned that Ben has Lewy body dementia. He'd been doing some odd things for a while...thrashing around in bed, seeing little people that I couldn't see. We could live with that, but when he started arguing with our neighbors over imagined slights, I decided it was time to see a doctor. Ben has always been a guy with an even temper and a smile for everyone. This just wasn't like him. I finally got him to go see Dr. Kennedy. I'm sure glad I went with him! He was so normal, the doctor couldn't see much wrong with him. But when I started telling her what had been happening, Dr. Kennedy started nodding her head. She says that what's going on with Ben sounds a lot like this thing called Lewy body dementia, or LBD, as she calls it. That's what is making him act so odd.
Dementia? I thought dementia was forgetting things. Ben doesn't forget, he obsesses! But Dr. Kennedy told us that there's a lot more kinds of dementia than just the kind where people start out by forgetting. We left her office so confused! Ben seems relieved to have a name for his odd behavior but I'm still not sure. Dr. Kennedy just diagnosed it from what I reported about his odd behaviors. She didn't order any tests. When I asked about that she said there were some tests but they were awfully expensive and they wouldn't tell us much more than she could, just from his symptoms. She said that what Ben had wasn't curable, that it would get slowly worse. That's awful! Maybe he has something curable? How do we find out? - Emily
Emily's post generates a multitude of questions:
What are the symptoms that Ben's doctor used to diagnose his LBD? How did she decide it was LBD and not another type of dementia, or something that wasn't dementia at all?
Thrashing around in bed: When a person dreams, the brain normally switches off the ability to move. LBD interferes with this and the result is Active Dreams where a person physically acts out their dreams.
Seeing little people that Emily couldn't see: Seeing hallucinations early on is a definitive sign of LBD, vs. Alzheimer's where these show up much later in the progress of the disease.
Imagined slights: LBD affects the ability to think before it affects one's memory--another way it is different from Alzheimer's. This leads to delusions, based on emotions rather than fact. Since negative emotions are initially stronger than positive ones, delusions are often negative: imagined slights, rather than imagined complements--and a change from Ben's normal positivity.
Arguing with neighbors: Most dementias cause a loss of impulse control. Normally, a person might choose to laugh at or ignore a slight, especially if arguing might make further interaction difficult. However, without impulse control, Ben acts on what he feels without considering the consequences.
Fluctuating cognition: When Ben saw the doctor, he seems coherent and normal. She didn't see much in her office that signaled dementia. However, Emily's reports of his actions told a different story. This is another definitive sign of LBD, vs. Alzheimer's. While both tend to cause a person's cognitive abilities to wane over time, with LBD, there can be occasional upturns. When this happens in the presence of someone other than the care partner, and especially someone important to them, such as a doctor or a visiting family member, it is called "Showtime."
We aren't suggesting that you use this information to make your own diagnosis! A lot more goes into that besides recognizing a few symptoms, including knowing how to treat the illness. Instead, use it to recognize the need to see a doctor. If your loved one has been diagnosed with Alzheimer's and is displaying these symptoms, consider asking if they might also have LBD.
Drug sensitivity is a common LBD symptom that Emily didn't mention. This is also more common with LBD than with other dementias and so an accurate LBD diagnosis is important simply because of this. Some drugs that are used fairly often with other dementias can often trigger this sensitivity, causing more problems than they solve.
While you do need to get that diagnosis and listen carefully to what the doctor says, you should never follow a doctor's advice blindly. Ask questions while in the doctor's office and do some reading about it when you get home. You are your loved one's advocate. That means that you need to understand why the treatment is recommended and what it is supposed to do...and of course, the possible side effects that you should look for.
You also have to be able to trust the doctor, which means you need to do your homework there too. Not all doctors are well versed in working with LBD. This could easily include your family practitioner. However, they likely know someone in your community to whom they can refer you, for a second, more educated, opinion.
Next week's blog will be about learning how to judge the accuracy of your doctor's diagnosis and getting a second opinion.
For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.
Monday, October 9, 2017
LBD Word for 10-9: Diagnosis
Today's word is diagnosis:
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.
- LBD often goes undiagnosed or is diagnosed as another disease such as Alzheimer's or Parkinson. It often shows up in combination with other dementias, making diagnosis even more difficult.
- Like other neurological diseases, LBD must be diagnosed mainly via patient history and symptoms.
- Diagnosis is very important because a) many of LBD symptoms are treatable and b) the wrong treatment can make it worse.
- A person is usually seen by three to five doctors before finally being diagnosed with LBD, and is usually diagnosed with at something else first, such as depression, Alzheimer's or Parkinson's.
- When taking anyone to a specialist for a diagnosis of any kind of dementia symptoms, make sure the specialist is Lewy-savvy to assure a more correct diagnosis.
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.
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: LBDtools.com
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: LBDtools.com
Friday, February 22, 2013
Snow and Disbeief
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