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 denial. Show all posts
Showing posts with label denial. Show all posts
Friday, February 8, 2019
Friday, February 1, 2019
New to Lewy: Pt. 4: Denial, A Part of the Acceptance Process
In a recent blog, Emily talked about how her husband, Ben, was diagnosed with LBD.
I knew Ben had problems but I wanted them to be something curable so that we could get on with our once comfortable life. I just couldn't believe that the doctor was right. For one thing, there were still days at a time when he was practically normal. I thought that if Ben could be so normal even part of the time, then eventually, he'd get better, wouldn't he? -- Emily
Emily was in denial, which is a normal part of the process of accepting a life changing diagnosis--of moving from old expectations to accepting the changes that an unwelcome diagnosis heralds. Those occasional "good times" that Emily described are due to one of the defining symptoms of LBD: fluctuating cognition. A person can have days, or even weeks of apparent normality which can fuel a person's already present denial. However, the LBD symptoms always reappear. and the general progress of the disease over time is always downward.
It wasn't long though until I realized that Ben was getting worse, not better. Yes, he had his spells of alertness, but over time, I could see that his general condition was degenerating. Like it or not, I knew the doctor was right. -- Emily
Although there may be periods of awareness, the general progress will be downward. Because Emily is living with this daily, the severity of Ben's symptoms made it impossible for her to hide in her denial for long. Sometimes, a care partner can become stuck in their denial, especially when the symptoms are less physical and easier to ignore. This is often the case with dementia with Lewy bodies (DLB), where the thinking errors precede the physical problems. Ben's symptoms were strong enough that once Emily could see that he wasn't really improving over time, her denial gradually changed to acceptance. Denial can also last longer for people who have less physical contact with their loved ones.
Our daughter, Ariel, lives in a different state and flies in for quick visits several times a year. "Dad seems just fine to me," she told me. "He's a little slower, but that's all." And when she was around he really was more alert. -- Emily
When Ariel came to visit, Ben went into Showtime, a totally involuntary form of fluctuating cognition that can appear in the presence of people who aren't around the person much but are still important to them. Showtime makes it easier for visiting relatives like Ariel to maintain their denial of a person's true condition.
Why is denial bad? Well, at first, it can actually be a good thing. It cushions you and gives you time to adjust. But when it goes on too long, it becomes a roadblock that makes life more difficult. It takes energy to maintain a denial, energy that could be used to learn how to adapt to the new realities. In fact, it keeps a person from seeing the need to adapt, and so they stumble along struggling to maintain the status quo when that is no longer a real option. When denial lasts for a long time, it usually takes a something drastic to cause a person to let go of it, a fall, an auto accident, or some other disaster.
In Emily's case, Ben's symptoms were strong enough that she had to let go of her denial before that happened and was able to move on. However, Ariel who only heard of them but didn't see them, kept hers and thus, was unable to give her mother the support she needed.
How can you help a person move out of denial? Sadly, denial is a lot like a delusion. In both cases, the person involved is stuck in their own reality and confrontations only make the situation worse. The difference is that trying to change a dementia-related delusion is futile. To some extent, that is also true with denial, but the difference is that the person in denial still has the ability to think--if you can get past their protective defenses and help them to do so.
As with delusions, you first have to support the person where they are--in their delusional denial. In other words, you must become their friend, not their enemy. If they have to defend their belief, you are lost before you begin. You don't have to believe them, but you do need to show that you accept their view. "Yes, I see where you are coming from. Maybe that's so," you might say.
Then you may be able to gently move them towards reality, "to gather a few more facts," you might suggest. This works best if you are willing to move with them, to make it "something we do together" such as going to the doctor or a support group, or even doing some research on the computer.
There, you can ask the questions that the person may be afraid to ask. Then, by playing devil's advocate and challenging the answers, you can reinforce your connection with them and likely, get some even more detailed answers.
Finally, make a point of accepting these answers with apparent reluctance. Mirroring the same reluctance, the person may be able to to begin letting go of their denial and start the move into acceptance.
If you are the one who is dealing with that unwanted diagnosis, you may be in denial and not know it. A good thing to do in this case is to consciously assume that you are experiencing some denial even though it may not feel that way at the time. (One aspect of denial is that the person truly doesn't recognize it in themselves!)
Give yourself a few days to get used to the idea of the changes to come. Then do a personal review. If you still believe that the diagnosis is wrong, what do you need to support that belief...or to change your mind?
Re-evaluate the events and symptoms that led to the diagnosis using any new information you have gathered. Then imagine that the person involved is someone else...someone you aren't connected to. Would you believe the diagnosis then? If so, what is keeping you from believing it now?
If you can see that it may be your fear of what is to come, then you are likely in protective denial. If you can accept this intellectually, you can probably move on to accept it emotionally.
Once a person lets go of their denial, they can begin the process of finding ways to keep life as normal as possible. One of those is to use the many benefits of support groups.
Next week, the final blog in this series: what to tell a loved one. The week after that will start a new series about 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.
I knew Ben had problems but I wanted them to be something curable so that we could get on with our once comfortable life. I just couldn't believe that the doctor was right. For one thing, there were still days at a time when he was practically normal. I thought that if Ben could be so normal even part of the time, then eventually, he'd get better, wouldn't he? -- Emily
Emily was in denial, which is a normal part of the process of accepting a life changing diagnosis--of moving from old expectations to accepting the changes that an unwelcome diagnosis heralds. Those occasional "good times" that Emily described are due to one of the defining symptoms of LBD: fluctuating cognition. A person can have days, or even weeks of apparent normality which can fuel a person's already present denial. However, the LBD symptoms always reappear. and the general progress of the disease over time is always downward.
It wasn't long though until I realized that Ben was getting worse, not better. Yes, he had his spells of alertness, but over time, I could see that his general condition was degenerating. Like it or not, I knew the doctor was right. -- Emily
Although there may be periods of awareness, the general progress will be downward. Because Emily is living with this daily, the severity of Ben's symptoms made it impossible for her to hide in her denial for long. Sometimes, a care partner can become stuck in their denial, especially when the symptoms are less physical and easier to ignore. This is often the case with dementia with Lewy bodies (DLB), where the thinking errors precede the physical problems. Ben's symptoms were strong enough that once Emily could see that he wasn't really improving over time, her denial gradually changed to acceptance. Denial can also last longer for people who have less physical contact with their loved ones.
Our daughter, Ariel, lives in a different state and flies in for quick visits several times a year. "Dad seems just fine to me," she told me. "He's a little slower, but that's all." And when she was around he really was more alert. -- Emily
When Ariel came to visit, Ben went into Showtime, a totally involuntary form of fluctuating cognition that can appear in the presence of people who aren't around the person much but are still important to them. Showtime makes it easier for visiting relatives like Ariel to maintain their denial of a person's true condition.
Why is denial bad? Well, at first, it can actually be a good thing. It cushions you and gives you time to adjust. But when it goes on too long, it becomes a roadblock that makes life more difficult. It takes energy to maintain a denial, energy that could be used to learn how to adapt to the new realities. In fact, it keeps a person from seeing the need to adapt, and so they stumble along struggling to maintain the status quo when that is no longer a real option. When denial lasts for a long time, it usually takes a something drastic to cause a person to let go of it, a fall, an auto accident, or some other disaster.
In Emily's case, Ben's symptoms were strong enough that she had to let go of her denial before that happened and was able to move on. However, Ariel who only heard of them but didn't see them, kept hers and thus, was unable to give her mother the support she needed.
How can you help a person move out of denial? Sadly, denial is a lot like a delusion. In both cases, the person involved is stuck in their own reality and confrontations only make the situation worse. The difference is that trying to change a dementia-related delusion is futile. To some extent, that is also true with denial, but the difference is that the person in denial still has the ability to think--if you can get past their protective defenses and help them to do so.
As with delusions, you first have to support the person where they are--in their delusional denial. In other words, you must become their friend, not their enemy. If they have to defend their belief, you are lost before you begin. You don't have to believe them, but you do need to show that you accept their view. "Yes, I see where you are coming from. Maybe that's so," you might say.
Then you may be able to gently move them towards reality, "to gather a few more facts," you might suggest. This works best if you are willing to move with them, to make it "something we do together" such as going to the doctor or a support group, or even doing some research on the computer.
There, you can ask the questions that the person may be afraid to ask. Then, by playing devil's advocate and challenging the answers, you can reinforce your connection with them and likely, get some even more detailed answers.
Finally, make a point of accepting these answers with apparent reluctance. Mirroring the same reluctance, the person may be able to to begin letting go of their denial and start the move into acceptance.
If you are the one who is dealing with that unwanted diagnosis, you may be in denial and not know it. A good thing to do in this case is to consciously assume that you are experiencing some denial even though it may not feel that way at the time. (One aspect of denial is that the person truly doesn't recognize it in themselves!)
Give yourself a few days to get used to the idea of the changes to come. Then do a personal review. If you still believe that the diagnosis is wrong, what do you need to support that belief...or to change your mind?
Re-evaluate the events and symptoms that led to the diagnosis using any new information you have gathered. Then imagine that the person involved is someone else...someone you aren't connected to. Would you believe the diagnosis then? If so, what is keeping you from believing it now?
If you can see that it may be your fear of what is to come, then you are likely in protective denial. If you can accept this intellectually, you can probably move on to accept it emotionally.
Once a person lets go of their denial, they can begin the process of finding ways to keep life as normal as possible. One of those is to use the many benefits of support groups.
Next week, the final blog in this series: what to tell a loved one. The week after that will start a new series about 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.
Friday, March 16, 2018
Denial
The main topic at our monthly support group recently was about denial:
My dad, Evan, still thinks he can drive. My mom, Lydia, is just as bad. His license would have run out this month, but she managed to get him a year's extension. -- Chris
Evan's delusion is dementia-based. A dementia-damaged brain accepts the first information available about an event and runs with it. Evan has been driving for fifty years. He also feels that driving indentifies him as an adult male. His brain takes these two already present pieces of information and closes shop. It can't--not won't, but can't, accept any more information about this subject. Therefore, he firmly believes he can drive. "But Dad, you didn't even see that stop sign," just doesn't compute. Evan's denial is not a choice; his dementia has taken away his ability to process information about how his driving has deteriorated. In a similar fashion, he is unable to see that he is beginning to have other dementia symptoms.
Lydia's delusion is denial-based. Some people deal with their spouse's dementia by researching it and learning all they can about it. Others deal with it by denying that it is present and doing their best to ignore it. This denial is what Lydia had subconsciously chosen to do. Denial is actually a healthy short-term defense mechanism that buffers the immediate shock of something we don't want to happen. However, when a person clings to the denial, it can be destructive in many ways. It becomes a delusion, an irrational belief, often almost as strong as the dementia-based delusions.
Last week's blog was how stress-based delusions can made a care partner's life even more stressful. Lydia's denial is not so much stress-based as it is emotion-based. Negative emotions, such as Lydia's fear of dementia, often trump fact and cause a person to cling to the denial long after its job is done. Then it becomes destructive. For example, a person may not get the treatment they need.
Dad has been to a urologist, a gastroenterologist and a cardiologist. I've done my homework and know that all of the symptoms he has are related to LBD*, but they refuse to go to a neurologist and see if that is what is bothering him. -- Chris
Trying to find other answers for Evan's dementia symptoms, as Chris's parents have done, is a common way for Lydia to cling to her denial.
The cardiologist told us that all of these symptoms are related to his nervous system and that we should see a neurologist. I hope that I can make that happen now. -- Chris
Because LBD has so many non-cognitive symptoms, such "disease shopping" is easy to do. However, it can be dangerous because as each physician treats their specialties, they may make the LBD worse. Evan and Lydia were fortunate in their choice of cardiologist. Another one might have recommended the installation of a pacemaker. The added stress of the required surgery would likely have increased his symptoms and the pacemaker is seldom much help with the LBD-related low blood pressure on rising.
The difference between dementia-related delusions and denial-related delusions are that the later are not hard-wired. What usually happens is that makes it difficult to ignore the issue any longer. In Florrie's case, last week, it was a definitive diagnosis. It is possible that the same thing could happen for Lydia. The process has already started, with the cardiologist's message. This helped her to She has let down her defenses enough to accept a visit to a neurologist, something she has strongly resisted in the past.
Letting go of buffering delusions is a painful process and Lydia will need her daughter's support and understanding. Chris might also take her mother to her next support group, where she'd get even more support.
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.
We love and welcome comments but we will not publish any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures and marijuana.
* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.
For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia Managing Cognitive Issues in Parkinson's and Lewy Body Dementia Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.
My dad, Evan, still thinks he can drive. My mom, Lydia, is just as bad. His license would have run out this month, but she managed to get him a year's extension. -- Chris
Evan's delusion is dementia-based. A dementia-damaged brain accepts the first information available about an event and runs with it. Evan has been driving for fifty years. He also feels that driving indentifies him as an adult male. His brain takes these two already present pieces of information and closes shop. It can't--not won't, but can't, accept any more information about this subject. Therefore, he firmly believes he can drive. "But Dad, you didn't even see that stop sign," just doesn't compute. Evan's denial is not a choice; his dementia has taken away his ability to process information about how his driving has deteriorated. In a similar fashion, he is unable to see that he is beginning to have other dementia symptoms.
Lydia's delusion is denial-based. Some people deal with their spouse's dementia by researching it and learning all they can about it. Others deal with it by denying that it is present and doing their best to ignore it. This denial is what Lydia had subconsciously chosen to do. Denial is actually a healthy short-term defense mechanism that buffers the immediate shock of something we don't want to happen. However, when a person clings to the denial, it can be destructive in many ways. It becomes a delusion, an irrational belief, often almost as strong as the dementia-based delusions.
Last week's blog was how stress-based delusions can made a care partner's life even more stressful. Lydia's denial is not so much stress-based as it is emotion-based. Negative emotions, such as Lydia's fear of dementia, often trump fact and cause a person to cling to the denial long after its job is done. Then it becomes destructive. For example, a person may not get the treatment they need.
Dad has been to a urologist, a gastroenterologist and a cardiologist. I've done my homework and know that all of the symptoms he has are related to LBD*, but they refuse to go to a neurologist and see if that is what is bothering him. -- Chris
Trying to find other answers for Evan's dementia symptoms, as Chris's parents have done, is a common way for Lydia to cling to her denial.
The cardiologist told us that all of these symptoms are related to his nervous system and that we should see a neurologist. I hope that I can make that happen now. -- Chris
Because LBD has so many non-cognitive symptoms, such "disease shopping" is easy to do. However, it can be dangerous because as each physician treats their specialties, they may make the LBD worse. Evan and Lydia were fortunate in their choice of cardiologist. Another one might have recommended the installation of a pacemaker. The added stress of the required surgery would likely have increased his symptoms and the pacemaker is seldom much help with the LBD-related low blood pressure on rising.
The difference between dementia-related delusions and denial-related delusions are that the later are not hard-wired. What usually happens is that makes it difficult to ignore the issue any longer. In Florrie's case, last week, it was a definitive diagnosis. It is possible that the same thing could happen for Lydia. The process has already started, with the cardiologist's message. This helped her to She has let down her defenses enough to accept a visit to a neurologist, something she has strongly resisted in the past.
Letting go of buffering delusions is a painful process and Lydia will need her daughter's support and understanding. Chris might also take her mother to her next support group, where she'd get even more support.
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.
We love and welcome comments but we will not publish any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures and marijuana.
* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.
For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia Managing Cognitive Issues in Parkinson's and Lewy Body Dementia Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.
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