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

Friday, April 20, 2018

Choosing Your Attitude, Part 3

This is the third in a four part series, Choosing Your Attitude for the Journey, by our friend, Pat Snyder, author of Treasure in the Darkness. The first week's blog was about being positive and being proactive. If you want to learn more about being positive, a multi-series blog on the subject will start in May. Last week's blog was about being perceptive. This week, it is about being persistent. Any gradually degenerating disease requires staying power. And if the disease is LBD, you need even more persistence as you deal with people who may know less about LBD than you do.

Be persistent.

Being an dementia caregiver is a long-term commitment. It is a marathon, not a sprint.

The term Lewy roller coaster for LBD folks has been coined to describe the experience due to the ups and downs in cognitive, physical, behavioral, sleep, and psychological symptoms. Your choice to be positive, proactive, and perceptive must be of a continuing, ongoing nature. You need to persist through these fluctuations as your Loved One progressively declines. It is a daily choice.

As new symptoms emerge over time, you will need to learn more and stay up to date about research and treatments that could be helpful. As your care continues, you will monitor disease symptoms daily. At times, you may question the efficacy of an intervention. Is the intervention working, or is this symptom simply a manifestation of the fluctuations of the disease? This is a typical question for you to ask in your role as care partner. Sometimes you will use your intuition correctly and change course. Other times you may not discover the answer. That is also typical, so do not blame yourself at these times.

You will also monitor those who are involved in your Loved One’s treatment and support. Part of your role is to teach any new person on the health care team about your Loved One’s expression of dementia. You may also need to teach them how to best approach the situations that arise in his care. You will deal with significant family members and friends who encounter him. All these things involve a consistent approach on your part. If your Loved One moves into a nursing home or similar facility, your role as advocate and educator will escalate.

Your steadfast persistence will pay off in a gentler LBD journey for everyone. This is one of those places in life where you clearly will make a difference. It is not easy, but it is doable -- and it is worth it.

Next week, Pat will talk about personifying the disease.

Helen and James Whitworth are not doctors, lawyers or social workers, nor is Pat Snyder. 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

Friday, April 13, 2018

Choosing Your Attitude, Part 2

This is the second in a three part series, Choosing Your Attitude for the Journey, by our friend, Pat Snyder, author of Treasures in the Darkness. Last week's blog was about being positive and being proactive. If you want to learn more about being positive, a multi-series blog on the subject will start in May. This week's blog is about being perceptive. A lot of this has to do with being empathetic, which is a subject we will cover thoroughly in our next book, coming later this year.

Be perceptive.

Be sensitive to the emotional and psychological impacts that dementia can have on you and your family. If left unaddressed, these things can have devastating physical consequences for you and your Loved One. They may determine how gentle the journey is for all of you. The diagnosis is likely to magnify any pre-illness emotional and interpersonal issues. Therefore, it is important to clearly identify those and learn how to manage them better. Doing this could provide significantly better outcomes for everyone. Consider including a counselor as a member of your health care team to help you address communication issues that need attention, relationship dynamics, and any pre-illness issues that can affect how you manage the symptoms of LBD, forgiveness of past hurts, and grief issues.

A second element of being perceptive is to be sensitive to your Loved One’s symptoms. You see him every day, unlike doctors who see him only for a short time during office visits. You need to observe and record changes in physical, psychological, and behavioral symptoms. Report these changes to the dementia specialist and work together to find solutions. Dementia patients may practice “Showtime” behaviors at doctor appointments, which make them seem to be much better than they are on a daily basis at home. Your report to the doctor keeps the information balanced, honest, and accurate. Sometimes changes in medicine can bring about an improvement of symptoms. At other times, non-drug choices can address these issues.

The third element of being perceptive is to identify the specific triggers that affect your Loved One’s experience of LBD in a negative way. This is where many non-drug interventions can have huge positive impacts on living daily with dementia.

Examples of simple changes with big impacts may be:
  • Softening the light in the room
  • Using oils like lavender to calm agitation
  • Playing favorite music
  • Having only one person speak at a time while in the room
  • Explaining what you are about to do before you begin to do it
These may seem like small things, but they can make a big difference in the person’s disease experience. You must be alert and perceptive to see what things trigger agitation or frustration. Then you can communicate with key individuals how those things must change in order to make the best care choices.

Helen and James Whitworth are not doctors, lawyers or social workers nor is Pat Snyder. 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

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

Friday, April 6, 2018

Choose Your Attitude, Part 1

This week starts a series on attitude by our friend Pat Snyder, author of Treasures in the Darkness. This is one of the lessons in her caregiver classes (with comments from me in italics). She recommends five steps for the beginning care partner. Actually, any care partner can benefit from these steps, no matter where you are in the journey. These first steps lay a foundation for a more gentle journey. Each of them helps you to stay ahead of the disease so you have more control over your daily life. Each of them will make you a better caregiver.
  • Be positive
  • Be proactive
  • Be perceptive
  • Be persistent
  • Personify the disease
This week's Pat's steps are a) being positive and b) being persistent:

Be positive.

After your Loved One’s diagnosis of dementia you are likely to be overwhelmed with negative emotions. These emotions are your first hurdle to overcome, and they tend to be ongoing.

Therefore, a commitment to use positive choices to overcome negative feelings is a technique that will serve you well throughout your time as a caregiver.

Using a positive attitude to overcome a negative situation is not denial of it but a conscious effort on your part to override its impact. (I call this making a conscious choice...something you must do if you want to think positively.) There are a number of ways to address this choice of being positive. It takes self-discipline and commitment to fight back an enemy that is trying to steal precious moments from your lives. It often involves doing the opposite of what you are feeling in the moment. So first, identify that negative feeling. Then choose to go in another direction. For example, if you feel sad, try to spend time with a friend who makes you laugh. If you feel empty, make a list of three things for which you are grateful.

These kinds of choices may feel simplistic and artificial when you first start to practice them. Over time, you will feel the benefit of not allowing the negative emotions to swamp you, keeping you in a slump of inactivity and helplessness. You will begin to feel empowered and purposeful in your role. Then you will realize that your positive choices have a profound impact on your Loved One’s experience of dementia. (Pat presents a great introduction to being positive. Look for a multi-part series on the subject, coming later in May.)

Be proactive.

You need to take action and not just react to what happens. Being proactive is an ongoing requirement. As you begin to assume your role, these actions will empower you:
  • Learn about dementia symptoms.
  • Learn about treatments for LBD symptoms.
  • Learn about non-pharmacological (non-drug) interventions.
  • Learn to identify the specific triggers that affect your Loved One’s experience of LBD.
  • Find the right doctor who knows how to treat LBD
  • Connect with other LBD caregivers to continue strengthening yourself.
When your Loved One received the diagnosis, you likely also received some printed materials that defined LBD and directed you to some helpful resources available in your community. However, you will need to seek out more in-depth knowledge in order to fulfill your role as the caregiver.

Do not overwhelm yourself in the beginning. Learn about the basics and gradually add more knowledge. It is important to get information from reliable sources. Use only trusted print and non-print resources. Look at the websites of government agencies, universities, hospitals, and associations like LBDA. Find medical journals, articles, and books written by experts and online support groups that offer reliable information and social support. Search for the right doctor who specializes in LBD care or who is willing to learn about proper treatment for this challenging and complex disease. Do not settle for one who does not respect you as the key member of the care team. (If you must choose between a Lewy-savvy doctor who doesn't respect your participation and a less Lewy-savvy doctor who does, choose the latter. You can teach information but you can't do your job without respect!)

Next week is more from Pat: Be perceptive.

Helen and James Whitworth are not doctors, lawyers or social workers, nor is Pat Snyder. 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 for sale.

* 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
LBDA: Lewy Body Dementia Association. LBDA.org is their website.
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

Friday, March 30, 2018

Medical Treatment During End of Life

Our local newspaper recently carried two articles that highlight two different aspects of medical care for persons living with dementia (PlwD).*

The first described an experimental Medicare program being offered in a few cities including Phoenix, where hospice services will be offered to people who are seriously ill and still receiving treatment. They will be looking for results that show if this lengthens lives and saves money, by reducing emergency room visits and other acute care services.

One thinks first of the person receiving chemotherapy or radiation treatments, but what about heart medications or other life extending drugs? Wouldn't it be wonderful to have a compassionate (and free!) team of caregivers to help with dementia care without having to make the decision about whether to give up those drugs or not? Sometimes these "life extending" drugs can also be helpful, as with those that treat ever-so-painful pneumonia.

The other article discussed the practice of continuing to test seniors for problems like breast cancer well into their eighties, as long as the tests are not dangerous. "A loving daughter of a PlwD said, "Why not? I want my mother to have the best possible care." Of course she does. But are tests like mammograms good care for a person with a disease like dementia? We believe that imposing such an experience on a dementia patient is not good care for several reasons
  • First, many of the tests are scary or painful. Take a mammogram, for example. Every woman knows how uncomfortable these are. 
  • Because most PlwD wouldn't be able to understand why they were being mistreated, they could become combative and difficult to manage without possible dementia-sensitive drugs that they would not otherwise need.
  • The likelihood of finding a cancer that can be treated in  PlwD's lifetime is low.
  • Any treatment would probably make the dementia worse, cause major discomfort or both so that even if it extended the person's life, quality of life would be lower than it would have been without treatment.
Both of these articles address end of life issues. No one is a greater advocate of hospice and good care for seniors than we are. People need to start using hospice much sooner than most do. It would be wonderful if they didn't have to make a decision to stop life-extending drugs. It would allow people to consider using hospice services sooner--but when should the use of life-extending methods stop? As for testing, we all need to do what we can to maintain our health, and testing is often where that starts--but when is it more damaging than helpful?

There comes a time in dementia care when the focus must switch from extending life to enhancing it--to making it as comfortable as possible. And so, yes, as long as these life-extending measures do not decrease a person's comfort level, why not leave them in place? But the truth is that they often conflict with dementia drugs or limit a person's enjoyment in other ways.

For example, Jim (Whitworth) loves grapefruit but can't eat it because it conflicts with his heart medication. That's fine for Jim. He has many other enjoyments and doesn't miss this much. But if his chances for enjoyment were severely limited as they are for many with dementia, eating something he can still enjoy might top the list. Then would the drugs be worth keeping? Would he even want a less enjoyable life extended?

Family members who opt for treatment or tests that they hope will extend the life of their loved one with dementia are usually responding to their own needs, rather than the needs of their loved one. Step back, look at it all from the view of the person living with dementia, and then make the decision. What would you want if you were in their present situation? Not what they would have wanted when they were dementia-free, but now. That is the answer that counts.

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.

Sunday, March 25, 2018

Empathy and Dementia

This week's blog is an excerpt from our upcoming book about dealing with BPSD.*

empathy: An awareness of other people’s emotions, a key element in the link between one’s self and others.

empathy deficit: inability to feel empathy, which can appear as indifference or selfishness.

Empathy is what a person uses to try to understand another's feelings. As thinking fades, emotional sensitivity increases and the PlwD* becomes more aware of other's feelings. However, this doesn't mean they are more understanding. Emotional sensitivity and empathy are very different.

I had an argument with my daughter before I went to visit Joe in the nursing home. He picked up the anger I was still feeling and started accusing me of running around on him, calling me awful names and telling me to leave. -- Lisa

Once Joe identified the feeling he picked up from Lisa as anger, it became his own. His damaged brain found a residual fear of desertion that provided a reason for his anger. (Without the ability to comprehend "might" or "later", what he fears might happen in the future, HAS happened NOW in his mind.)

Empathy is a two-step process:
  • Affective empathy, a person feels another person's emotions as though they were their own. You experience this when you see a friend's painful toe and your perfectly healthy toe twinges in sympathetic pain.
  • Cognitive empathy, where a person uses abstract thinking to identifying those feelings as the other person's, and not their own. "She feels sad. I'd feel that way in her situation too."
Joe did affective empathy just fine. He picked up Lisa's anger and felt it. The problem was that he couldn't take the next step and identify it as hers, not his. Dementia makes everything personal.

I started crying and asking why he was trying to hurt me. He just yelled more and said, I was the one who was hurting him. I'm devastated. Joe was always such a gentle man and I used to be able to talk with him about anything and he'd understand and help me work through it. I miss that so! -- Lisa

Once a man of great empathy and wisdom, Joe is now unable to provide either. With only concrete thinking, Joe could no more put himself in Lisa's place and understand her pain than he could understand that his anger was really a reflection of hers.

Dementia keeps a person in the here and now and makes everything personal. What appears to be extreme selfishness is simply the inability--the inability, not the choice--to see anyone's view but their own. The concept of "I'd be angry, or sad, or hurt, if that happened to me" is just too abstract. One either is, or isn't. An inability to feel cognitive empathy is about twice as likely for people with early LBD than for a person with no dementia and increases as the disease progresses.

Takeaways:

Attitude: View your PlwD's uncaring attitude as a symptom of the disease. By accepting that understanding is no longer possible, it is easier to avoid being hurt.

Acceptance: Accept that your PlwD's responses are hard-wired and once made, cannot be changed. Accept that you CAN change and that you CAN choose how to respond.

Choice: Choose not to react out of pain, anger, hold onto resentment or see the PlwD’s lack of empathy as a failure on your part.

Action: Monitor your feelings and make an effort to show only positive ones around the PlwD, even in the face of accusations.
Action: Sympathize with their pain and move the action in a positive direction.

Self care: Use a support group to vent feelings that build up even though you understand intellectually that the PlwD's indifference is beyond their control. Use it to alleviate some of the loneliness you may feel too.

Action: Prepare ahead for social situations. One care partner made cards to hand out that read, "Please excuse Hank. He has a brain disorder that causes him to say things he normally wouldn’t. Our apologies.”

Treatment: Acceptance, with soothing responses if needed. Dementia drugs and non-drug remedies that relax and/or increase cognition can increase empathy temporarily.

We hope to have this book published before the year is over. You'll be hearing more about it as we go along.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

References:


Eres R, et al. (2015). Anatomical differences in empathy related brain areas: A voxel-based morphometry study. http://www.frontiersin.org/10.3389/conf.fnhum.2015.217.00187/event_abstract

Heitz C, et al. (2015) Cognitive and affective theory of mind in Lewy body dementia: A preliminary study. http://www.ncbi.nlm.nih.gov/pubmed/25847396

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.

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.

Friday, March 9, 2018

Stuck in Caregiver "Dementia"

I just read Florrie Munat's book, Be Brave, A Wife's Journey Through Caregiving, in which she tells the story of her six year care partnering journey with her husband, Chuck. I was impressed with her honesty as she shared how she'd been caught up in so much denial and "magical thinking." Intellectually, Florrie knew that Chuck's dementia was an incurable, progressive disease but emotionally, she could not accept that prognosis. She talked about how she felt that she must stand in the path of the progress of the disease, that she felt that if she did everything "right" she could stop it, change it, get their life back. Of course, this was a lost cause and so then she added guilt and failure to her other emotions.

Sadly, Florrie's story is not unusual. It is similar to that of many care partners, complete with denial, or as she calls it "magical thinking," gargantuan efforts, guilt and failure. No wonder care partners are so often burnt out and often die before their charges do!

When Jim and I talked about Florrie's story we began to look at it another way. Chuck wasn't the only one with dementia symptoms. Anyone who experiences extreme stress will also have dementia-like symptoms, not dementia itself, but the same symptoms that people with dementia have. Their thinking becomes inflexible, single-minded and obsessional.

When a person living with dementia (PlwD) has a delusion, they are stuck with it. Their limited thinking abilities do not allow them a second opinion. They must believe the delusion their brain has presented to them as fact. A care partner can explain, argue or defend but nothing will change the PlwD's belief, their reality.

In her stressful condition, Florrie's "magical thinking," caused her to believe beyond all doubt that she had to be with Chuck continually for him to be cared for properly. Even though many people whom she respected and whose advice she normally would have accepted told her to let go, to take some time for herself, she couldn't do it. It wasn't that she wouldn't. She literally couldn't.

Florrie's magical thinking was her reality and she was stuck with it just like a person with dementia is stuck with their delusions. Care partners learn that they cannot explain, argue or deny a delusion because this is their loved one's reality and it can't be changed; not by the care partner and not by their loved one. Likewise, you can't expect an overburdened, stress-out caregiver to understand the need to change their behavior. Suggesting this will simply increase their determination, adding feelings of loneliness and isolation due to your obvious lack of support for their "very necessary" efforts.

What usually happens is that something interferes. For Florrie, it was getting a definite diagnosis of LBD*, at which time she began to accept the invincibility of Chuck's deterioration and the fact that he'd never be able to live at home again. Often it is something more drastic, a fall, an illness, an injury of some sort, maybe to the care partner, maybe to their loved one. But something finally gets the care partner's attention and they have to accept that they can't do it all.

A month after Chuck's LBD diagnosis, Florrie was taking more time for herself and she was able to write in her journal that it was a privilege and blessing to take care of Chuck. When she let go of the full responsibility for something she couldn't control, it greatly reduced her level of stress. Then, unlike true dementia symptoms, her stress-related dementia-like symptoms decreased and she was able to enjoy life, and Chuck, again, but in a more accepting way.

Most people don't even want to consider the possibility of dementia before they have to. Denial is not only possible, it's the norm! But treat the need for self-care like insurance. When you buy a car, you don't plan to have a wreck, but you buy the insurance anyway. And you don't wait until you need it, because then, it's too late. You buy it as soon as you get the car, so that no matter what happens or when, you are protected.

It's the same with dementia. No one plans for their loved one to have dementia. But "buy the insurance." At the first hint that dementia might be in your future, start thinking about self-care. That's as important as finding out what kind of treatment is best for your loved one. Find out what you need to make routine to avoid caregiver burnout and put it into practice now even if you don't feel the need of it. These are the things like taking an hour for yourself that get lost, forgotten and dropped as the caregiving gets more demanding. By making your own care a priority right from the first and setting up routines to protect it, you will give your loved one a much happier, relaxed and just plain better care partner.

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