Caring for the Caregiver During the Pandemic

This article, written by Michele Grigaitis- Reyes DNP, FNP-BC CNRN, FAAN, was borrowed from the Beacon,  a newsletter from Phoenix's Banner Health. We've attended the LBD caregiver support group Michele facilitates there and can attest that she is very familiar with LBD and all its challenges.

Now in addition to you being the primary caregiver to your loved one, your activities are restricted. Your loved one may be seeming to decline as time goes on. You both are likely at high risk for complications if contracting the virus and likely your families and friends are telling you to “wear a mask and stay home”. Something as simple as going to the grocery is fraught with decisions- do you go in the store? Do you take your loved one? You no longer have the ability to access some of those respite activities that were so helpful to you. Even visiting with your family is limited. An already stressful role is now exponentially increased. So, what can you do?
1. Eat a healthy diet. Both you and your loved one will benefit from maintaining a typical diet. On occasion If possible, order takeout from that restaurant you both like, or go for a drive and get lunch from a drive thru
2. Neither you nor your loved one will benefit from adding or increasing alcohol. Limit your intake to no more than you did prior to pandemic. The National Institute of Aging recommends no more than 1 glass daily for women or 2 for men.
3. Get plenty of sleep. Lots of research shows sleep is an under recognized and under-treated problem in caregivers. We know that “role overload” is associated with poor sleep quality, and currently the restrictions of the pandemic would lead most, if not all, caregivers to overload.

• Stick to a sleep schedule, even on weekends. 
• Be sure your exercise is 4-5 hours before bedtime. 
• Keep the bedroom cool, and turn of that television, tablet, or cell phone! The lights associated with these are known to affect sleep. 
• Be sure to have bright light exposure during the day.

4. Regular exercise is very important. Perhaps you played golf, or pickleball, or went to the Silver Sneakers program. Or, maybe you didn’t really exercise at all. Now may be a good time to start. There are exercises you can do at home. Perhaps you and your loved one could take a walk every morning. You can do simple exercises with items you have at home. You can find a step by step plan, with pictures, at www.nia.nih.gov and type in exercise.
5. Establishing a routine is very important, and now more so both for you and your loved one. Eating meals at the same time and your sleep schedule at the same time nightly. Try to do some exercise 3-5 times a week. Try to include an enjoyable activity each day or week.
6. Take breaks from watching, reading, or listening to the news. Hearing about the pandemic non-stop is stressful for everyone. If television watching must occur, try to find channels that have pleasant or “happy” stories.
7. Use, or learn, relaxation techniques. Yoga, Tai Chi, Mindfulness meditation, and other methods, can do wonders for your stress level. Even taking deep breaths for a minute or two can be helpful. There are a myriad of resources online.
8. Connect with others. Reach out to families and friends. Call on the phone, or perhaps chat with the neighbor over the fence.
9. Connect with support groups. Most groups are being held using some type of technology platform such as Zoom or Skype. These programs allow you to see each other. If you don’t have access to the technology, that’s not a problem either. Most have the option to call in on the telephone. (You can find a list of online LBD support groups at LBDA.org.)

Thank you, Michele. Next week’s blog will be the start of a series about managing dementia-related behaviors.

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
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.

2019 ILBDC: Caregiver Empowerment, Pt. 4

By the time you've been a care partner for even a few months, you've gained a pool of valuable information and insights. Such on-the-job training is every bit as valuable as a college education in its own way. It can be very rewarding to pass this hard-earned education on. We all feel better when we can give and share.

Caregiving isn't any different. True, you give a lot to your loved one, but sharing your attention and experience with other caregivers and with the community at large can be extremely rewarding. Some of the many ways you can do this are to:

• Share LBDA materials with all of your healthcare providers
• Raise awareness about LBD among your personal network or in your community at large.
• Be a listening ear to other caregivers in both online and local support groups.

Many care partners continue volunteering and teaching about LBD long after their loved one has passed on. Jim is in his 16th year after Annie passed away. The group facilitator of our local support group is in her 4th post care partner year. Angela's father passed away a while back (I'm not sure when.) I could go on, but you get the idea. Your work with LBD doesn't have to stop when your caregiving job ends. You can keep on being involved as long as you want to. But only if you want to. Some care partners don't and that' OK too.

In summary, a caregiver has many hats: Bookkeeper, housekeeper, chauffer, personal shopper, social secretary, medical care coordinator, and more. Often these jobs are new and not all that comfortable. Your loved one may have been the one responsible financial record keeping and probably for their own medical care. But now these jobs are yours, along with others such as educator and advocate. How do you do it all? How do you do it all and still have time for you? Anglea says you are more likely to be able to make this happen if you:

• Preparing in advance
• Using outside resources
• Developing your skills
• Taking care of yourself and
• Leveraging your experiences.

Each the above four pillars of caregiving empowerment are covered more thoroughly in this and the previous 3 blogs. If you utilize them, you will find your path smoother, you will be more relaxed and your loved one will be more content.

About Angela Taylor. Angela followed Jim as the LBDA board president. When her term was over, she joined their staff and is now their Director of Programs. A member of the sandwich generation, Angela was also a wife and mother while caring for her father who had LBD.

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.

2019 ILBDC: Caregiver Empowerment, Pt.3

This is the third in a series called The Four Pillars of Caregiver Empowerment, presented at the 2019 International LBD Conference in Las Vegas by Angela Taylor. The first pillar was about thinking ahead. The second was about using your resources and developing your skills. This week's blog is about a subject that many care partners neglect to do, caring for yourself. Yet, it is probably the most important task you have. YOU are your most important caregiving tool, and your loved one's most needed person.

Start by considering your obligations. Besides being a care partner, what else is there? Do you have a spouse or children that need your attention too? Do you have a regular job, or volunteering responsibilities? And what about your house? Who does the housekeeping, cooking, gardening, etc., etc.? Write it all down. Don't worry about whether you can do it all right now. For now, you just need to see what it is that you feel responsible for.

Make room for you. Now make up FOUR (4) to-do lists as follows:

• For me to do. On it write down all the things you normally do, or think you should be doing. (Warning: This list is likely going to be far too long! Far more than you can do each day. Don't worry. You can shorten it later.)
• For others to do: Start out by writing down all the jobs that others already do. Are there any crossovers? For example, does your daughter shop for you sometimes? Now go back to your "for me" list and find more jobs that others could do. Don't worry about who. Just make a list of things others could do for you, like vacuuming the floor or doing the dishes or shopping or...well, you get the idea. Don't forget to add "sitting with loved one while I go play." This is the list you refer to when someone asks you if they can help. You can even print some out and hand one to the asker, with a "Thanks so much. Here are some ideas."
• For me to do for myself. Write down all you can think of. This may take more effort because you aren't used to thinking about this--and because you are afraid there won't be time and so why plan on it? Don't worry. Just write them down. Now when you have some time--like when someone offers to sit with your loved one or do your dishes, you can refer to YOUR list and find an activity that will refresh you. Don't forget to add "naps!"
• Not to do at all. Look over your "for me" list again. What is there that just really doesn't have to be done? Be ruthless. Cut out all you can! And cut down too. Instead of washing dishes after every meal, consider every day, or even less often, for example.

Join the LBD community. As the disease progresses, you will find that you have less in common with old friends, and even family. But with fellow caregivers, especially fellow LBD caregivers, you will find empathetic ears, a safe place to vent and practical caregiving tips. You may also find new friends.

Manage your own health. This could be a whole single blog in itself--but I doubt there is much here you haven't heard. Nevertheless, how much of it do you do? It is all important. Remember if you don't maintain your physical and emotional health, your body is likely to rebel and you won't have any choice--you will be the one being cared for and who knows what will happen to your loved one.

Work to eat healthy, have regular physical exercise, get enough sleep and fluids, make time for socializing and more for just being quiet, and finally see your doctor when you need to and re-fill your prescriptions.

Next week's blog will be the final one in this series.

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.

2019 ILBD: Caregiver Empowerment, Pt. 2

Last week, we started a series about Angela Taylor's Four Pillars of Caregiver Empowerment. This week we move on to her Pillar 2. You, personally, have a lot more resources than you may be aware of.

You are the expert. As the care partner of someone living with LBD, you become the expert. That's true even if you weren't that close before you became their caregiver. When I became my much older sister's caregiver, I knew very little about her. We'd actually never even lived in the same town, let alone the same house. But before long, I was an expert on her needs. I had to be to do my job well. You get to know how they relate to family. You know their level of education and as time goes on, you learn what they can understand and what they can't. What they can do and can no longer do. You know their hobbies and interests, those activities that can help them still feel like the person they used to be. You know their personal preferences and idiosyncrasies, those little things that can make life miserable or happy.

Try empathy first. However, as the disease progresses and your loved one's ability to communicate diminishes, understanding their wants and needs can often be frustrating. Step back and think about what you might want if you were feeling and thinking the things your loved one is. What's going on? Are they frustrated by things they can't do anymore. Speak to the underlying feeling. Are they experiencing hallucinations or delusions? Empathy will put you in their reality, where you can relate with them rather than expecting them to relate with you in your reality--a set up for disaster! Are they confused or anxious? Try empathy laced with patience, to help them calm down. Are they depressed or apathetic? Both are LBD symptoms, all of which get worse with stress and better with relaxation.

Be realistic. Schedules, routines and rituals are a caregiver's best friends. They help your loved one feel more in control of their life. But when you set them up, take into consideration how much longer everything takes now, and how much more energy it takes as well. Be alert for tiredness and low energy levels and curtail activities if necessary. Adequate sleep is extremely important. As time goes on a person living with LBD will sleep more and more. This is normal. But so are night time wakings because their time clock doesn't work well anymore. Do your best to keep these minimal--mainly for your own need for sleep, but be realistic about their presence. It may make more sense to have someone stay at least some nights every week so you can get some sleep. Finally, as the disease progresses, personal hygiene will become less and less important to your loved one. Insist on enough to keep him acceptable and safe and let the rest go.

Find community resources.If you are fortunate, you have family members who can help you. But even then, you need to know about the resources that are available in your community. The list is long and you should start researching these well before you need them. Remember it is much easier to make informed decisions if you aren't in crisis! Check out the following: home care assistance, respite care, legal and financial services, geriatric care managers, government agencies, adult day programs and long term care choices.

Finally, don't forget about the LBDA Research Centers of Excellence. Visit www.lbda.reoe to see if there is one in your area. If so, do take advantage of what they offer:

• Experts in clinical management of LBD. You can always find a Lewy-savvy doctor here with the latest information because the centers also provide LBD education to their health professionals.
• Support groups and community education for you and the community.
• Opportunities to participate in research, which can be a gratifying experience.

Next week's blog will be Pillar3: Care for Yourself. This is a subject we talk about often, but never too often, given its importance!

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.

2019 ILBDC: Caregiver Empowerment, Pt.1

This week's blog starts a series about a presentation of Angela Taylor's at the 2019 International LBD Conference in Las Vegas.

These four pillars can act as a guideline to help you do the things you need to do while taking care of yourself as well. This week is all about

Pillar 1: Prepare in advance.

Knowing what you are dealing with and getting some ideas about how to do that BEFORE you need it, before it is a crisis situation, can make all the difference in the world. It is sometimes difficult to think about the future, especially when you've just received a diagnosis. However, the sooner you can do this, the easier your life is going to be later on.

Study the basics. Learn about LBD, its symptoms and how it is managed. (We have several books that can help you with that--as can many entries in this blog. Check the books out at the end of every blog entry.)

Think ahead. Get your legal and financial matters in order. If you can do this while your loved one can still legally sign papers, it will make the process much easier. Care partners also highly recommend that you hire an elder care lawyer to make sure all of these complicated tasks are done correctly and in a way so that you will get the best benefit as the disease progresses.

Prepare for doctor visits and medical emergencies by keeping a journal and having a "go bag" of things you will need in the emergency room. Make sure your loved one's living will or other health care advisories are all in order.

And think ahead about when it will be time to stop driving. Again, if this is discussed while it is an abstract issue, it will be much easier to come to an agreement. And once that agreement is in place, you will find that your loved one will be more accepting of it later (not necessarily willing, even then, but less resistant!)

Plan to adapt. This starts by accepting the diagnosis. Accepting that you life and your loved one's life will change, and will continue to change. As the disease advances, there will be role changes. You will, of necessity, take on more responsibility. Your loved one's job becomes different, not easier. It will take more and more of his effort to maintain. Think about how you will balance this major, new priority, caregiving, with your work, family and social life. Planning now, can make this much more possible. Above all, cultivate a flexible attitude. Don't get caught up in "what was." That will keep you from finding ways to adapt to the new realities.

Keep living. Don't let LBD be all there is! Continue to make new memories together. Find enjoyable things to do together and with family and friends. Empower your loved one to contribute to these memories. Maintain your connection and trust with each other. You are a team. And finally, remember to appreciate the simple pleasures of life.

Next week's blog will be Part 2 in this series about the Four Pillars of Caregiver Empowerment. Pillar #2: Use Outside Resources and Develop Your Skills.

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.

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

Lewy Body Phrase for 10-22: Care Partner Care

A person living with dementia (PlwD) who has a healthy, rested, happy care partner will have fewer behavioral and psychological symptoms of dementia (BPSD) than one whose care partner is sick, overburdened, tired, or irritable.

A PlwD mirrors care partner stress as a negative emotion of their own and, without impulse control, acts it out.

Martha is tired, her back hurts and she's worried about the car that needs repairs. Dave picks up on Martha's stress, identifies it as his own residual fear that his life is disappearing, and begins to shadow her everywhere she goes.

Short term solution: Martha needs to take a few hours of respite so that her stress level will decrease. With less stress of her own, Dave will also be less stressed, he won't feel so fearful and his shadowing will decrease.

Log term solution: Martha may need to hire or ask for help so that she can get the rest she needs, see a doctor about her back, join a caregiver support group and/or talk to a financial guide about budgets. See our many blogs about caregiver care or read about it in our books.

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.

Guilt, Worry and Anger

These three negative emotions cause caregivers--and your loved ones--a lot of pain and stress. In recent blogs, Mary, George's caregiver, has been learning how to deal with negative emotions. But these three, guilt, worry and anger still trip her up...a lot.

Guilt

Feeling guilt is how people try to control the past. Mary can't change that she was impatient with George, but she can at least, feel guilty it. Mary's brain accepts this as an immediate solution, but it doesn't accomplish anything and so this triggers more guilt. This adds stress, so that Mary will likely be even more impatient in the future. To deal with guilt,

• As with any other negative feeling, recognize your feelings of guilt and put them into words. And then LET THEM GO. Consider guilt a toxic feeling that you don't want hanging around.
• Look for the underlying feelings. Guilt is a "secondary feeling." That is, it is usually a response to other feelings like resentment or fear or feeling inadequate. Recognize these and put them into words too.
• Be compassionate with yourself. You are human and you have a very stressful job. Give yourself the same consideration you'd give someone else in your position.
• Align your future behavior with your values. While you can't change what has already happened, you can set yourself up to behave differently in the future. For instance, if you made a commitment to make weekly contact with your daughter but have been letting it slide, set up a special time and put it on your calendar.
• Ask for help. A lot of caregiver guilt comes from feeling you should be able to do it all. You can't. Caregiving is not a single person job. Call a friend or relative to come "visit" with your loved one while you take some "me time." Hire help for a few hours a week, or more if you need it. This is money well spent.
• Accept that taking care of yourself is "being a good caregiver." A loved one with a happy, healthy caregiver has less stress, and is happier and safer.

Worry

Mary used to worry a lot. That's how she tried to control a future that felt uncontrollable. Like guilt, worry is a temporary fix but adds stress because it doesn't actually accomplish anything. To deal with worry,

• As with guilt, put feelings of worry into words, and then let them go.
• Look the underlying feelings. Worry is another secondary feeling, often following feelings of fear and uncertainty. Turn these into words too.
• Think about what you can do. Make a list things you can actually do to change a situation. Thinks like asking for help or going to a support group. Then follow through.
• Once you've done what you can, let it go. If this is difficult, set a timer and allow yourself to worry of 5 minutes. Then move on.

Anger

This is a feeling that Mary often buries under guilt and worry. But it too, is a secondary feeling, which usually follows emotions like frustration, inadequacy and fear. When Mary can't do anything else about it, she can at least feel angry. As with the other feelings, feeling angry is a temporary fix that doesn't solve anything...and often makes matters worse. Unlike guilt and worry, both of which can be immobilizing, anger tends to move Mary into action, resulting in words or behaviors that she may regret later. Therefore, the first step for dealing with anger is to learn how to express it in constructive ways--or avoid expressing it.

• Get enough rest and take care of your health. This is a big one. If you are rested and healthy, you will be better able to respond to the frustration of a balky loved one or an unhelpful doctor more rationally. You may feel the anger, but you won't have to express it.
• Practice deep breathing. Taking three deep, cleansing breaths gives you some time to calm down and adds oxygen so that you can think clearly.
• Self-talk. Have some soothing chants that you can use in a hurry: "It's okay." "Let it go." "He isn't doing this on purpose." "It's the disease, not my loved one."
• Laugh. Step outside of the situation and see its absurdities and silliness.
• Later, you can do your homework of putting angry feelings into words and looking for underlying feelings. This may make it easier to deal with future anger.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Don't Take It Personally!

Most LBD caregivers have heard this: “It’s not my loved one acting out. It’s the disease.” Mary Givens often responds to that with a “Yes, but.” “Yes, but it is so difficult to separate the person who still looks and often acts like Ed from his disease.” “Yes, but it still hurts.” “Yes, but I forget.” And so on. Being able to separate yourself from a person’s action is a learned behavior—an adult behavior. It takes insight, and the ability to make a conscious choice to look at the situation a different way.

Mary is a grandmother as well. For her two year old grandson, Jerome, everything is about him and he acts on his feelings without thinking. This is normal and he will grow out of it. Not as quickly as you may think, however. Mary’s son just went through a divorce and his 15 year old daughter, Megan, is devastated. She believes she caused the divorce because her dad couldn’t deal with her teenage behaviors. Even though her parents have insisted that this isn’t so, that it was their inability to get along, Megan still feels to blame.

In fact, do we ever grow out of our self-centeredness completely? Well, yes, most people do, but we often regress, especially when stressed. Stress limits our resources and we tend to regress back to earlier coping behaviors—to acting on feelings impulsively with little or no evaluation as to their validity and to seeing things from a lens that excludes other people's feelings and concerns. The person who “never” cries, cries. The usually careful dieter pigs out on junk food. The caregiver who can usually recognize that her loved one’s behavior isn’t about her takes the behavior personally.

With LBD, the person begins to regress back to that place where everything is again taken personally. like Mary’s grandson, everything is about "me."

Mary is like most people. Her initial response to Ed’s negative behaviors, even when she knows it isn’t really about her, is to take it personally. For a moment, she is shocked, angered, scared, insulted, etc. However, she has found that when she acts on that initial feeling, she is in a no-win situation, squabbling with Ed like a couple of toddlers. No one gets their needs met. Certainly not Mary, who probably ends up crying. And not Ed, whose behavior was likely a stress-related communication about something he needs.

Ed can’t change. He will likely continue to express his needs with shouting and other acting out behaviors. And Mary will continue to respond initially by taking it personally. But Mary doesn’t have to stay there. She can still think and make judgments and choices and act on them. And so Mary makes a conscious choice to view the behavior as a symptom of Ed’s disease. Immediately, this reduces her stress level. It is no longer a personal assault. It is now a cry for help. Now, in caregiver mode, Mary starts looking for the cause of Ed’s irritability. She knows that if she finds it and responds to that, Ed will probably calm down.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

"I think I'm Getting Dementia Too!"

What dementia caregiver has not said or thought "I think I'm getting dementia too." When you feel this way, it is probably true that you ARE exhibiting signs of dementia. That doesn't mean you have it! What it does mean is that you are probably stressed, have been for some time, and need to take care of herself. Stress is a leading cause of reversible, temporary dementia. Or let's be gentler and call it temporary mild cognitive impairment.

No one thinks clearly when they are stressed. We are hardwired to react without thinking when we are stressed. That's the way the caveman escaped the saber-toothed tiger. He didn't stop to think about what to do; he just ran. The remedy is a break from caregiving...maybe five minutes locked in the bathroom to take some deep breaths, or maybe a whole week's vacation away from the loved one. Or, likely something in-between, hopefully on a regular basis, like a girl's afternoon out with friends.

Stress can make the PwLBD's dementia symptoms worse too. When the body has to deal with stress, then it the Lewy bodies are allowed "free reign" and symptoms increase. Stress does not cause LBD or make it progress faster, but it sure does make it more unpleasant! Anything you can do to keep stress at a minimum will decrease symptoms and increase quality of life. One of the main stressors is the stress level of the caregiver and so we are back to how to reduce caregiver stress. Other reasons are environmental and emotional. In most cases, find the stressor, remove or decrease it and the stress will also decrease.

There some other causes of reversible dementias. These are usually easier to diagnose than the progressive ones like LBD or Alzheimer's because they have specific causes. Some are very serious, such as brain tumors, and may require surgery. Others are easier to fix--these are the one this blog and the next will be addressing.

Vitamin D deficiency. I discussed this in last week's blog. It is very common with the elderly and can cause a lack of energy and possibly cognition losses.

Dehydration. When there isn't enough fluid in your system to allow blood to circulate freely, adequate oxygen doesn't get to the brain or other organs. This is more likely with the PwLBD than with the caregiver, but it can happen. Signs of possible dehydration include bad breath, headaches, dry skin and a craving for sweets. Signs of good hydration: a) urine that is a clear, very light yellow, and b) skin on the back of the hand that quickly bounces back after being pinched, pulled up and dropped. To improve water intake, choose plain water over fizzy drinks or colas. Drink smoothies and fill up on vegetables and fruits instead of dry carby foods like crackers and pastas.

Sleep deprivation. Seniors are also more likely to be wakened up with bathroom breaks and sleep apnea spells. It can be especially serious for the 24/7 caregiver who is up night after night with a restless loved one. Signs of sleep deprivation are hunger and weight gain, impulsivity and being overly emotional, poor memory and decision making skills, poor motor skills--and a susceptibility for illnesses. (Very similar to signs of stress!) The average person needs about seven hours of sleep a night. If you aren't getting this, try to catch a nap during the day when your loved one is napping. To allow easier sleep, use pressure pads for beds and chairs to warn you about when a loved one is getting up.

If none of these fit but you still feel "dementia-like," next week's blog will be about a few more reasons for feeling less alert.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

New Year's Resolutions 2016

1. I will practice gratitude. When a friend or family member spends time with my loved one I'll send them a quick thank you note. (Besides making me feel better, it’ll encourage them to help more in the year ahead.) And I'll thank myself when no one else does. Even if my LO doesn't say it out loud, I know they are thinking it...or would if they were able to.

2. I will take at least five to ten minutes of "me time" each day. I know my emotional health is a important. I will do some deep breathing, meditate, read some inspirational literature or enjoy a hobby for that time.

3. I will join a support group where I can learn, share and vent.

4. I will find a way to exercise that fits with my schedule and my preferences. And then, I will truly make an effort to do it regularly.

5. I will find a way to get enough rest. This might be moving to a different bed if my loved on is a restless sleeper, or even hiring a nighttime caregiver. I know that I can't be a good caregiver without adequate sleep...or a healthy one either.

6. I will take care of my physical health. I will keep my doctor's appointments and follow through on the doctor's advice. I will get my flu shot and take my medications regularly.

7. I will ask for help. I will remember that asking for help is caring and smart. It is NOT selfish or a sign of failing. I will start by learning about local resources and support that may be locally available. I will make up a list of activities to give to people who ask "How can I help?"

8. I will work to see the world from my loved one's point of view, so that I can "join his reality" let him know I recognize his feelings and thus, defuse his anxieties.

9. I will let go of the "shoulds" of life and look for the positive in everything I do, and in everything my loved one does...even if it is smearing feces on the wall I just cleaned yesterday.

10. I will view the professionals in our lives as partners, not adversaries, and until proven wrong, will assume that they want the same good care for my loved one that I do. I will remember I am my loved one's advocate and that most advocacy requires diplomacy.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Preparing for That Long Slide

Two weeks ago, this blog was about recognizing that more than normal fluctuations had happened and the stress that accompanies such a slide. This week is about things you can do ahead to prepare for that time. Remember, preparation is like insurance. You certainly don’t want whatever it is you are insuring against to happen, but you know it can. Experiencing such a slide is going to be stressful no matter what, but having a plan in place and information available will go a long ways towards limiting that stress.

Know where to get help. Develop a list of places and people that may provide the help you will need. Call them now, while you aren’t in crisis and find out about their services. Sort them out by groups and grade them so that you will have a first and second choice when the time comes.

Plan for respite care: Jim and I are fans of planning a respite routine well before it is actually needed. Start out with just a few hours a week. Then with a routine in place, it can be expanded when you actually do need to get away for a while, even overnight. This initial time is very stressful for both of you. Having a respite routine in place will reduce your stress because you will already have a plan. It will reduce your loved one’s stress by keeping change at a minimum.

You may already have friends or family coming to stay occasionally. This will not be enough. You will need more than a few hours of time that is often clouded by worry that your helper may not know what to do if something goes wrong. After a long downturn, regular respite care needs to start as soon as you can get it set up. You can choose between at home help or respite care in a long term care facility, or if your loved one can still function well enough, adult day care. The same issues that apply to choosing long term care apply to chosing any of these.

If you plan to use home care, start using it immediately for a few hours a week—enough to build a relationship with your helper. If you plan to use respite or day care, start visiting the facility. Go to lunch or dinner there, and use their day care services. Even “take a vacation” together and visit overnight.

Equipment: You may suddenly need a wheelchair, a bathroom commode, a hospital bed or even a lift. Know where you can get these supplies. Physicians can write prescriptions so that Medicare will cover much of the cost. Find out now what the process is for this to happen. For example, can you call in your request or does the doctor need to see your loved one and evaluate the need?

Hospice. This may sound extreme, but it is also practical. Hospice offers the services and equipment you need to make your loved one more comfortable and you less stressed.

Walter’s slide happened after a bout with a UTI. The doctor told us the end was likely near and suggested Hospice in our home. It helped physically but I became really depressed. I checked out funeral homes and looked at urns. It’s been three years now and Walter is still living. He never recovered from his downturn but he still has periods of awareness. That’s when he tells me he is going to live a lot longer than I think! Walter was on Hospice for a year before they decided he didn’t qualify. By then they had helped me over my depression and I was able to find a LTC facility for him close to home. --Joan

Hospice requires a doctor’s documentation that death is likely within 6 months. However, many people, including those with LBD, recover enough that they go off hospice and live for many months or even like Walter, for years longer. That’s because hospice is designed to decrease stress and we know what stress does to the Lewy team! Using hospice is not an admission of failure or even that the end is coming in less than a year. It is a practical use of available services in a time of severe need. Hospices vary in the services they provide. Read more about Hospice in the 6/15/13 blog.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

How to Help a Caregiver, Part 1

Lisa Cooke is our guest blogger this week and next. She received such positive feedback for her “What NOT to say to a caregiver” blog (reposted here last month) that she decided to do a follow-up. What she came up with is so long—but so good—that I’ve divided it into two blog entries.

Many friends and family members really want to help, but they don’t know how. I polled some on-line support groups, asking the caregivers what they wish people would say or offer in order to make their lives a little easier. Below is a list of suggestions that might be helpful for both the family members and the caregivers. I’m frequently asked by friends if there’s anything they can do and I never have an answer. Now, I have some ideas!

Nice things to say Sometimes, a kind word goes a long way, but knowing what to say without hitting a nerve can be tricky. Everyone has their pet peeve when it comes to things like this, but most caregivers were pleased when they were complimented for what they did.

She’s lucky to have you taking care of her and You’re doing a great job are comments that offer encouragement when given by someone close enough to the situation to know what you’re going through. However, when I hear those things from someone I barely know, I always think, “How would you know?” As with anything, sincerity is important.

My sister-in-law is very close and offers support and love regularly. When she sends an email, she nearly always ends it by thanking me for loving her brother so much. It warms my heart, every time. If your LO is being cared for by a family member, tell them you appreciate and are grateful for the love they’re giving in your absence.

I think about you often. Sometimes it helps to know others are aware of your struggles and pause to offer prayer or positive thoughts. Caregiving is a lonely business. It’s easy for us to think the rest of the world has forgotten we’re alive.

Helpful things to do. When I asked the question, “What do you wish people would say to you?” the overwhelming response was an offer of help. At this point, many friends reading this are cringing. The idea of helping care for someone with dementia scares them to death. But there are ways you can help that don’t require providing physical care. You can offer to do chores or deliver a meal.

“There are little things around the house that I can’t do. I wish someone would offer to fix the back door, or remove some of the brush from our yard,” one caregiver said. If you’re handy with home repairs, consider asking the caregiver to put together a list of projects s/he needs help with, then set up a time to do it. That last part is key. If you don’t arrange a time to show up, the caregiver probably won’t follow through with the offer. Ironically, they’re too overwhelmed with everything else to schedule help.

“Bringing over a meal every once in a while would be nice, or bringing something to stick in the freezer for those days when I’m too tired to cook.” Caregiving usually gets to the point of being very confining. Having a change in the menu can feel like a miniature vacation, even better if the person bringing the meal, stays to share it! If you don’t cook, pick up a meal or gift card for takeout from a restaurant. It’ll be appreciated, guaranteed.

Another caregiver said, “I wish someone would offer to clean my home or do my laundry. It would be nice to get a break.” Caregiving is all consuming. Unfortunately, the house still gets dirty and laundry still piles up. If your schedule doesn’t allow you to help in that way, consider paying for a housekeeper before the holidays or when family is coming for a visit. The caregiver will be eternally grateful.

VISIT! Another oft repeated request was for a visit. Many caregivers feel forgotten. It’s an easy thing to happen. The withdrawal from society happens gradually as their LO’s disease progresses. Soon, their friends forget about them as they continue on with their own lives. There’s also the problem of friends being afraid to visit. Dementia has a horrible reputation, sometimes it’s warranted, but short visits normally aren’t a problem.

The key is to call first and give the caregiver a couple of days to plan for the visit. This allows the caregiver a chance to schedule personal tasks that need to be done privately like showering. Simply pick up the phone and say, “We’d love to come and see you guys. What would be a good time for you?” Follow that with, “Can we bring something or run an errand for you on our way?”

I’m an author and caregiving duties have forced me to stop traveling to writer’s conferences and workshops. I miss that part of my life quite a bit. Luckily, I have some dear friends who also write and who call me periodically to brainstorm plots. As a rule, they live too far away to stop in for a visit, but one of them actually took a day of her spring break to travel the 3 hours it takes to visit me. She spent the night and we talked writing and book plots for the better part of two days. It was wonderful and didn’t require I leave my husband behind. That’s a gift I will never forget.

Read the rest of Lisa's suggestions next week! In the meantime, you can go to her blog, LewyWarriors and read more of her writing.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

Resolve to be a Better Caregiver?

“Yeah, sure,” you say. “I’m already over my head in running errands and doctors appointments and staying up half the night with my loved one—and on and on. I can hardly do what has to be done. How can I be better?”

Well, the first thing is to take better care of yourself! If you are already” over your head” in caregiving, you don’t have enough help. Caregiving is NOT a one person job.

Mary, a local caregiver told her support group, “But I’ve always taken care of Alex without help. It’s been a one person job so far—and I don’t want that to change.”

The group’s response to that was to remind her that at first, it hadn't been a one person job. When Alex could share the load, the couple got along fine. But as he became less able, Mary had to take on more and more. It has changed already—from a two-person job to a two-person job that only one person was doing.

“I never thought of it that way,” Mary said. “I guess I do need to make some changes. “But,” she cried, “How can I do that? We live on a limited income. We can’t afford to waste money hiring people to do things I can do.”

“But can you do those things?" the group leader asked Mary. “Yes, you can do each one, and probably do it better than anyone else. But can you do it all? Or more to the point, can you do it all without getting sick? Damaging your back? Losing so much sleep that you become exhausted. Developing any one of these illnesses that caregivers are susceptible to like diabetes, heart problems, stroke, dementia, even death?"

“You make it sound awfully bad. Really, we are doing all right. I just feel overwhelmed now and then,” Mary said.

The group was right. It IS serious. And if Mary doesn’t stop trying to do it all, one of those problems the group leader mentioned will happen. Eventually she may not be able to care for Alex at all.

If, like Mary, you have come to realize that you need more support, here are some suggestions.

Resolve to make a small change first. Many caregivers start by having someone come in a couple of times a week at bath time. Or consider having someone do double duty—some light housework while they watch your loved one which frees you up to go shopping, or out to lunch, or both. Check into local Adult Day Care programs. These relatively inexpensive programs can give your loved one a change of scene and you a few free hours each week.

Resolve to attend a support group. This is as important as making sure your loved one takes his medicine. Maybe more! A support group helps you to know you aren’t alone. There are a lot more people just like you out there and they are willing to help you in a lot of ways. You can vent and the group will understand. You can ask questions and hear what others have found is the best facility or neurologist or treatment or drug or whatever for them and their loved one. You can learn about their experiences and how to make your tasks easier. And much more!

Resolve to ask for help. There are many organizations that can provide assistance, sometimes for free. You can find out what and where these organizations are at your local support group. If not, go on line and search. Start with Eldercare Online (ec-online.net). Family, friends, neighbors, church and members of any other organization that you or Alex belongs to may also be able to help. Sometimes help will come in the form of money to hire help. This is a great way for a distant family member to feel involved. And sometimes, help will simply be an ear, willing to listen to you vent.

Resolve to take time to be you. Take care of your physical health. Make and keep your doctor’s appointments. And take care of your emotional health too. You are more than a caregiver. You are a person in your own right. Do something to remind you of this every day, even if it is only to read an enjoyable book for a half an hour.

Remember, taking care of the caregiver is your PRIMARY job. Only then can you do a good job with your loved one!

Caregiving is NOT a One-Person Job

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Dave and Bet were our neighbors in an RV campground. Bet was recently diagnosed with LBD and Dave is working hard at adjusting to his increasing responsibilities. “I’m not there yet, but I’m working at it,” he said with a grin. But actually, he’s already doing better than many who've been at it much longer.

One of his first steps was to ask for help. Caregiving is not a single-person task. Like many men—and sadly, fewer women, Dave recognized that right away. When Bet was diagnosed with LBD, they were full-time RVers in Yuma, AZ. He called his daughter, Lynn, and asked her to come and help. She did and together they made it to the Pacific Northwest where Dave and Bet now live—still in an RV but with a permanent address. Lynn and her family live nearby and she helps with the caregiving to give her dad a break now and then.

Dave has learned to ask for help in other ways too—as with his experience with public restrooms in last week’s blog. Asking for help is often one of the most difficult things a caregiver can do—and one of the most important. However, once the need is known, most people are eager to help. During a discussion in an online support group, a couple of women mentioned that their church groups have rallied around, doing things like bringing casseroles, doing the laundry, sitting with loved ones so the caregiver can run errands and much more.

Of course, asking for help can boomerang. Lynn often calls Dave and offers to take her mom the next day. Dave has learned to “wait and see.” If Bet isn't up to going out, the experience wouldn't be pleasant for either Bet or her daughter. Lynn understands, but if it is someone who doesn't understand the changeable character of LBD, they can be discouraged and won’t offer again. In another situation, a woman in a support group shared that a neighbor has been willing to help in an emergency but asked not to be called one again. “She couldn't stand the sadness of it all,” the woman said. This can lead to feeling guilty for asking in the first place but don’t let that happen. Instead, feel sorry for the person who sees only the negatives.

People often don’t know that help is needed, or they don’t know how to help. Or, someone will offer to help and right then you can’t think of anything specific. Or you can think of things, but you don’t know if they fit what the person would want to do. Some people solve this by keeping a list of things that would help as they come up. Things like staying with your loved one while you run errands, coming in to do the vacuuming, bringing a casserole so you won’t have to cook, or even doing the dishes. Every caregiver will have a different list, of course.

For more about asking for help, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, both available on our website, LBDtools.com.

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Caregivers Get Sick Too

This week, I have the flu. Yes, I had my flu shot but I’m still sick. Awfully sick. I’m spending more time in the bathroom than anywhere else. I’m afraid to get too far away for fear I won’t make it back in time. And I feel nauseous. Lying down helps, and so I’m spending a lot of time lolling around in bed, hoping I’ll feel better when I get up. And I usually do, for a little while. That’s when I do stuff like this.

But I can hang out in the bathroom. I can stay in bed. I can do as little or as much as I want. My husband is here; he picks up the slack. And so I am fortunate. If he had LBD and I was his caregiver, it would be very different. I wouldn’t have the freedom to be sick, to hide in the bathroom, to stay in bed. And if I did, who knows what would happen. And so, I’d be out there, trying to carry on. Any of you recognize that scenario? I’ll bet most of you have been there!

I’ve been thinking as I loll around in bed that caregivers need a backup plan. What do you do when you are too sick to care for your loved one? Do you soldier through anyway? I’ll bet a lot of you do. But you aren’t doing anyone any good. Here’s why:

• You can’t do a good job when your mind isn’t fully there—and when we are sick, you know it isn’t.

• When you aren’t fully present, your loved one senses it (remember they are very perceptive!) and feels deserted—and showing it by acting out in some way.

• If you don’t take care of yourself while your illness is minor, it can and often does get much worse. They you may find yourself in the hospital and unable to care for your loved one at all.

And so, what is your plan for when you get sick?

• When I was my sister’s caregiver, we had a respite caregiver who took over occasionally to give me a weekend away. We started early and so it was something my sister expected and accepted. If I’d been sick, I could have had her come in for that too. However, when I developed a bad cold, I did as most caregivers do—I struggled on. And I gave my sister my cold. I felt awful! Sometimes, it is no favor to “struggle on.”

• Do you have a place where you can “hide” and take care of your illness. If your home is large enough, maybe you can stay home, although the temptation to “help out” is always there if you do. But if your place is small, find a retreat. Stay at with a family member, a friend, or if necessary, a hotel. But not at home.

• Do you have access to any other type of respite care, such as hospice? That is a wonderful blessing. Get your loved one on hospice as soon as possible so that you have access to all of their wonderful services. (No, it doesn't mean they have to be very near death!--more about that in another blog...or check with the hospices in your community.)

• Do you have relatives or friends who will come in for a while, or several days? As I did, try to start using them early on, so your loved one is used to the occasional “change of guard”—and your volunteers grow used to the changes in your loved one too.

• Do you have any other ideas to share with our readers?

 Remember that taking care of yourself is one of the most important—and loving—things you can do for your loved one. Where would they be without you?

Caregiver Guilt

November is National Caregiver Month—the time for all of you caregivers to be specially recognized. You make it possible for your loved one to stay at home, or if they are in a care facility, to continue to get the best care possible and to feel loved—no small thing, that. Wives make up many of these caregivers. This is one wife’s story.

When my husband developed LBD, I felt I’d failed. I didn’t know what it was that I’d done or not done to keep Richard from succumbing to this awful disorder, but I must have been at fault. After all, it was my job as wife and mother to keep my family well. And when Richard became so ill that we had to move him to a nursing home, I felt I’d failed again. Once he was sick, it was my job, as a good wife, to take care of him. And now, I’d passed that job to someone else. I was physically unable to care for him at home, but still, it was my fault somehow. I’d failed again. I was so filled with guilt that I could hardly bear to look at Richard.

I forced myself to go to my support group and I admitted my awful guilt. I expected them to agree with me, to say they felt guilt too. And then we could wallow in it together. Some did. But one wise soul called me on my “pity pot.” She told me, “You are using guilt to try to control the past. And it doesn’t work. It just makes things worse. Look at what it’s done to you.”

I hated to admit it, but she was right. I was a wreck. I couldn’t sleep, I was living on junk food and I was hiding, even from my husband who, I knew, still needed me. I couldn’t stop Richard from getting LBD, or later, keep him at home, and so I tried to control fate with my guilt. And it wasn’t working. I didn’t feel in control at all.

“Let it go,” she said. “You are still Richard’s wife, and his caregiver. But guilt keeps you from doing either of those well—if at all. Let it go and get on with your life.”

I did. Every time I started feeling guilty, I made myself stop. That’s when I realized that my job was far from done. Richard needed me every bit as much as he had when he was home. I was his security, his emotional support. I was the staff’s resource for what worked and what didn’t work for him. Now that I don’t carry a huge load of guilt and I’m not burdened with all the physical care, I can be Richard’s wife again. What a blessing that is—for both of us.

Taming LBD

No one wants to have LBD or wants it for their loved one. The normal, even healthy, first response to such a diagnosis is denial. It protects the mind and provides some time to adjust. However, when it lasts past this adjustment period, it becomes destructive. Whatever you are denying—in this case, the LBD—is like a terrifying animal that has invaded your home.

You feel compelled to spend all your energy and resources hiding from it and protecting yourself from this unwelcome invasion. But this allows LBD to do just what you fear. It takes over your life, limiting it much more than need be. When denial is effective, it blocks you from doing anything to deal with the problem—there isn’t any problem after all. When it slips—and it always does, you feel the pain of what you perceive as an unbearable truth.

Release the denial and you’ll find that the truth IS bearable—not what you wanted, but definitely bearable. When you accept that Lewy is a part of the family, you release all the energy that had been used to hide from it. Now you can use that energy to tame the frightening, ferocious animal you perceived Lewy to be. No, it will never be the sweet little pet you wanted, but it can be tamed.

The taming starts with rephrasing. It’s not dementia. It’s a disorder. This is true and it sounds less scary. Yes, dementia is part of the disorder, but it is part of many disorders. It is progressive rather than degenerative. Both are true, but progressive reminds you that LBD’s progress is very slow and that your efforts can slow it down even more. It is treatable, rather than incurable. True there is no cure, but there are many ways to treat, or tame it; to slow it down, to make it less difficult. Keep on the lookout for new words to rephrase. Each one helps.

Using humor helps too. Choose laughter instead of embarrassment. When you or your loved one forgets or can’t do something that used to be easy to do, joke about it. Laugh with your loved one, not at them, of course. Like denial, embarrassment is stressful and holds you back. Humor releases tension for both of you and allows you to move on. It may not be easy to laugh or joke about something that feels so frightening and serious at first, but it becomes easier as you make humor a part of your “self-treatment.”

Talk about it. The more openly you can talk about the disorder, the tamer it becomes. When it is simply a fact of life that you can work around, it stops being a scary monster taking up so much of your emotional space. When you share what’s going on with you with others, you will discover that they are more interested than rejecting and more supportive than pitying.

Finally, become a seeker instead of an avoider. Make it your job to learn as much as you can about LBD. Find a support group; use the internet to research; ask questions. Again, the more energy you put into knowing and understanding this disorder that has invaded your family, the more you can tame it and maintain your quality of life.

Finding Time for the Caregiver

When taking care of your loved one is a full time job, how do you take care of the caregiver? You know it’s important; there are multitudes of articles about how important it is to your well-being, and to your loved one’s as well. But where do you find the time? Or the energy? Or even the inclination?

It isn’t easy, but those articles are right: it is as important as any of those things you manage to do for your loved one because “they have to be done and I’m the only one to do them.”

1.      Maintain your support system. This is number one for a reason. It makes all the other suggestions easier to do—or sometimes, possible. Join a local support group—the members KNOW your life—they live it too. Join an online support group too. There’s a list of them on the LBDA website. You can reach out at any time of the day or night and find support.

2.       Use your loved one’s “downtime” for your own care. As the dementia progresses, it is normal for your loved one to sleep more and more. Take advantage of this gift of time in your busy schedule. Yes, you have housework, etc., etc., but it will keep; do something just for you. Fix your hair, do your nails, take a bubble bath. Read a book, preferably something that will make you laugh. A Rexfull Summer, by Helen Buell Whitworth is just such a book, and you can buy it on the LBD Tools website. (OK, this is an outright plug for my book—but it really is a fun read.) These “time outs” will help you to feel refreshed and more ready to face the reality of your again.

3.      Look for something to laugh about every day. It doesn’t have to be wildly funny, just laugh. Something your loved one says or does, something you do, something on TV, something you read--Rex, for instance. (OK, that’s my last plug.) People in caregiver support groups are always sharing humor—often “black humor”—things that are only funny if you are living with the stress of daily caregiving.

4.      Make respite a part of your routine. Do something away from home, and without your loved one, at least once a week. If you start this early on, your loved one will find it much easier to accept. Use your support system—ask friends or family to sit with your loved one for a few hours now and then. Wave goodbye and be out the door as soon as they arrive! If your loved one qualifies for hospice, be sure to ask for volunteers to sit with your loved one a few hours a week. Caregiver respite is not a luxury; it is as much a requirement as a good doctor. And so if none of the above suggestions work, pay someone to come in. (Perhaps you can have them do some of that housework you skipped too!)  If distant relatives have asked how they can help, paying for respite time is a great suggestion.

OK, now it’s your turn. I’ve only mentioned a few ideas here. There are lots more. What do you do to take care of yourselves?

Delusions of Unfaithfulness

Of all the questions we get about LBD, this is the most difficult. We addressed the issue in our March 2nd blog, but it deserves more attention.  Mary told us, “Art accuses me of meeting other men. A half-hour trip to the grocery store is a tryst with my lover. A chat on the phone with my daughter is phone sex.” Mary’s denials only make Art more certain of her desertion. She is at her wit’s end.

As  dementia increases Art’s feelings of inadequacy, he fears that Mary will no longer view him as a desirable companion. Because Lewy has damaged Art's thinking filters, what he FEARS is what he accepts as FACT. Thus in  Art’s mind, Mary IS deserting him. The more intense the fear, the stronger the delusion.

It’s easy to say what not to do about such behavior: Don’t try to reason with your loved one. That will only cause more agitated. He/she hears your claim of innocence as a denial of their fear.

It’s less easy to say what to do. You need to find ways to:

a)      Increase your loved one’s thinking filter so he can process his emotion. If he does not jump directly from feeling to fact, it will be easier for him to accept that you are not deserting him.
Dementia drugs, such as Exelon or Aricept, are fairly safe and often help to control behavior. That is, they may improve the thinking filter and decrease his delusions. Even if your loved one’s doctor doesn’t think  cognition drugs are needed yet, you might ask if they could be started with the goal of decreasing acting-out.

b)      Lower stress. Few of us function well when we are highly stressed. However, LBD both adds stress and lowers its threshold. Acting-out (in this case, delusions) increases with stress and decreases when stress is decreased.
Chapter 9 in  A Caregiver’s Guide to Lewy Body Dementia and our March 15^th blog speak to dealing with environmental and health issues to decrease stress.  Read these and use them as guides for eliminating things in your loved one’s environment that add stress.

c)      Substitute positive feelings for negative ones. The blessing of dementia is that it makes it difficult to hold two feeling/thoughts at the same time. Feelings, not thoughts or beliefs must be the target.
Perhaps the most effective intervention of all is to distract your loved one with positive feelings and happy thoughts. The stronger the happy feelings the more effective they will be. This takes some planning and preparation. Think about an event when you were having a wonderful time together—when your loved one felt secure in your love. A special vacation, your wedding, etc…. Then, gather together some props: photos, music, items with special meaning, etc.  When your loved one begins to act out, say something like, “Oh, honey, look what I found. Didn’t we look sweet in these photos?” Once you have his/her attention, start talking with the goal of increasing the happy feelings. Remembrances of happy feelings in the past will usually work better than talking about present feelings. Don’t worry if it doesn’t work the first time. This is a learning process. Next time, try again, using what worked and changing what didn’t. Your loved one likely won’t remember what you did or said anyway. It's a new event each time.

d)     Add a buffer so that his feelings aren’t so intense. Since the strength of the delusion depends on the intensity of the feeling, this may decrease or even end the acting-out.
If none of the above tactics are enough, you and your doctor may want to consider another drug, perhaps one of the more Lewy-safe anti-depressants. And, while we hate to even suggest behavior management drugs, they do have their place. Seroquel, for instance, can be quite effective with few apparent side effects. However, research has shown that dementia patients who take even second tier anti-psychotics like Seroquel risk an earlier death than those who do not take these drugs. That said, there may come a time when you choose to balance quality of life against length of life.

e)      Consider residential care. If safety or extreme caregiver stress becomes an issue, this may be the best, if unwelcome, answer.
This is a step that few caregivers want to take, especially while their loved one is physically able. However, with Lewy body disorders, acting-out behaviors sometimes start before other symptoms and advance to being too difficult to handle at home before the physical load does. Sometimes, even when all of the above steps have been tried, the acting out will continue. At such times, caregivers must recognize that anything that puts them at risk also puts their loved one at risk. Thus, if they become so stressed out that they cannot function well or if their loved one’s acting out becomes physically dangerous, placement in a Lewy-savvy residential facility may be the answer.  Caregivers who have fought this step but finally made it, often say, “I’m a better caregiver now. I can give my loved one so much more of me, now that I have regular time to get away and regroup.”