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

Friday, July 13, 2018

Dealing with Resistance, Part 2

Notice: We are well into our summer season of traveling and from this day until the middle of October, when we return home, I will be posting blogs every two weeks.

This week's blog is the second in a two-week series of blogs in answer to Joan's post:

The main time my husband I argue is when he goes in his depends and refuses to let me change him. It is a horrible nightmare. Wish I knew what to do. Joan

Last week's blog was about Joan doing her homework, setting the scene and practicing being positive. Now, she needs to take a deep breath, put on her smile and go to work. If you haven't read last week's blog go do it now before you read more.

Joan, if your husband is resisting, he likely sees you as his tormentor. As long as this is so, just being positive isn't enough. Instead of trying to reason with him (hopeless!) or ordering him to be compliant (anger-making!), agree with him and become his ally.
  • Help him to feel heard: Listen. Nod your head. Agree with his complaints.
  • Help him to feel understood. Coo soothing words of sympathy. 
  • Change the focus of his anger from you to what you want to change, in this case, his soiled pants. "Those awful pants are making you uncomfortable, aren't they? Let's get rid of them."
(Warning: Gentle touch is a great help, but not until the anger is defused. Otherwise, you are in danger of being hit as your husband strikes out in defense.)

Now that you are both on the same side, you can address any remaining fears. Work to figure out what the triggers are.
  • One of them may be you! He may be reacting to his fear of giving up control--of being treated like a child instead of an adult. Work to treat this like a cooperative event as much as possible. Let him do what he can himself and include him in the task every way you can, even if it is simply to tell him what "we" are doing.
  • Use your knowledge of your husband to think of any other fears that might be driving his resistance and think of ways to neutralize them.
With his fears decreased, his anger will dissipate and he will be able to start mirroring your positive attitude. With more positive emotions in control, he will be more agreeable and less resistant. Make sure you stay positive and give him lots of kudos. You can't overdo the compliments! Gentle, un-custodial touching (that given voluntarily and not needed for the job at hand) works wonders here. If you've planned for music, use it now. Music and its rhythm can help you promote togetherness, and the idea of working together. You can sing, but if you need your husband to help you, don't expect him sing too. He can do only one thing at a time.

If he starts getting resistive again, it means the fears are returning. This is especially likely to happen if you are too task oriented. Now is the time to take advantage of his short attention span and use distraction to change his focus from what he's beginning to worry about again to something pleasant. If you wait too long, the negative emotions will take over and you'll be back to square one. A bribe often works well--"Let's get this done so we can go have some ice cream."

Once the job is done, pile on the compliments, hugs and lots of gentle touching. And go get that promised ice cream. You need it too!

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, July 6, 2018

Dealing with Resistance, Part 1

This next two-week series of blogs is in answer to a question from a frustrated care partner:

The main time my husband and I argue is when he goes in his depends and refuses to let me change him. It is a horrible nightmare. Wish I knew what to do. Joan

Sadly, your concern is far from unusual, Joan. It used to be that you could reason with your husband, changing his belief and changing his behavior. Reasoning is now useless. It requires thinking skills a Person living with dementia no longer has. Think of the process this way now:
  • The surrounding environmental triggers an emotion. These can also be residual, that is, something perfectly benign may trigger an old fear.
  • This emotion drives your husband's beliefs. Most driving emotions are negative. Designed to motivate, they are strong, pushy and long lasting.
  • Your husband's beliefs drive his behaviors. Once he has made up his mind, he CAN'T change it. Can't, not won't. But he can change his focus--with your help!
Your first step is to educate yourself. Most care partners simply want to know HOW to deal with these difficult issues. However, until you know WHY they are happening, you probably aren't going to be very successful. It will also be more difficult for you to take what you've learned and apply it to a different issue.
  • Learn why your husband's dementia-damaged brain won't allow him to change his mind.
  • Learn why he can change his focus and what the difference is between changing his mind and changing his focus.
  • Learn why you are the one who must change your expectations, your attitude and your actions.
  • Learn why negative emotions motivate and drive behavior while positive emotions encourage calmness and relaxation.
  • Learn why negative behavior is often triggered by the fear of something to be avoided.
  • Learn why it is so important that you start positive and stay positive, no matter what.
This information is on our website, in our past blog entries, in our books (see below) and in Teepa Snow's free YouTubes.

Next you must prepare. "Set the stage" so that there are fewer triggers--fewer things to avoid.
  • A common trigger when skin is about to be exposed is the fear of feeling cold. Make sure the bathroom is cozy warm before you even start and have all the supplies handy so the job won't take any longer than necessary.
  • If mirrors trigger the fear that a stranger is watching, remove or cover them.
  • If you can think of other ideas to help your husband feel more comfortable, implement them. It is worth the effort!
To start positive and stay positive in the face of his resistance takes practice and determination.
  • Being positive does two things. It prevents you from escalating your husband's behavior the way being frustrated would and gives him something to mirror. He can't change his emotions himself, but he can mirror yours.
  • Make the practice of being positive a part of your preparation, and think about how you can stay positive even in the face of his resistance. You want to be believed and so you must smile from your heart. It won't work otherwise!
  • Take some time just before you start to make a conscious choice to be positive no matter what. Think of the love you feel for him and be determined let it show, even in the face of his resistance.
Plan your distractions, the methods you will use to change his focus. Each person living with dementia is different and so the distractions that work best will be different for each one too.
  • Bribes are always a good bet and ice cream is a favorite. Make sure you are prepared and able to provide whatever you use as a bribe quickly.
  • Music and rhythm can help you focus on working together. Unless you plan to do the singing yourself, set up your music delivery system ahead of time so that all you have to do is push a button.
Next week: The real event!

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 Disordes

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, June 29, 2018

Constructive Caring, #7: Enjoying the Journey

The last blog in this series is about ways to enjoy staying positive. That's important being a positive care partner requires constant attention, constant effort. But that's OK because, the more you work on staying positive, the more enjoyable--and fun!--you will find it to be.

Meditate: Even a few minutes of meditation a day will decrease stress and improve sleep. Bonus: It also improves clarity and focus, both of which last long after the meditation is over. The goal is to give your brain a rest from all the busy, busy thinking it does. Meditation operates on the premise that your brain can do only one thing at a time. It rests your brain, adds oxygen and just makes you feel good. Here is a quick easy mediation:
  • Close your eyes and focus on your breathing. In and out, slow and easy.
  • Do that for as long as you want. Don't worry if you find yourself blanking out or drifting off. Just go back to focusing on your breathing.
  • If you feel pulled in some other direction, if you find yourself thinking about something else, gently draw your attention back to your breathing.
  • Don't be disappointed if you find it difficult to stay focused at first. That's normal. Just keep trying.
Slow down. Take time to stop and smell the roses, look at the sunsets, notice your loved one's smile, enjoy a relaxed meal. Even talking slower is better for you. Speedy behaviors cause the motivation hormones connected with negativity to flow and make you more nervous and uncomfortable. (And here you thought that talking slower was something you did for your loved one who needed the time to process! News flash: It is also good for you.)

Listen to music. Music is magic! It can relax you or energize you. Warning! Music can also trigger negative emotions, especially anxiety. If you find a kind of music that doesn't make you feel good, avoid it. You don't need that! Find music that you do enjoy and that relaxes or energizes you and listen to it regularly. Include the PlwD*, and make it a part of your daily lives. Music travels to the brain along its own pathway and people can enjoy it long after they can use language. Sing. Dance. Be the music. The more you do this, the more positive you will feel. The positive feelings you get from music will last a long time after the music has stopped playing.

Give a gift. It doesn't have to be material. Offer a compliment, help out with a chore, do a little extra. Caregiving can become more job than "helping" but if you offer just a little bit more, an extra pat or hug, it becomes a gift. Giving a gift triggers your own feel good hormones more than once. When you choose a gift for a specific person, you will likely imagine what it will feel like to give it. Since your brain doesn't differentiate between imaginary and real, you get to enjoy a hit of feel-good hormones then. With any gift, you get a hit when you actually give it and another when the giftee shows appreciation. (That's why, when you receive a compliment, you never want to discount it. Your self-put-down deprives the donor of their return gift.)

Laugh, smile and nod. Laugh all you can. Smile at everybody. Agree with people as often as you can. Nod to music. Yes, even that works! These all cause those gift-giving and receiving hits of feel-good hormones and another from the feeling of connection when your friend laughs, smiles or nods back with you. But you don't really need a reason to laugh, smile or nod. Just do it. They trigger your body to respond as though you were saying "Yes! Yes! Yes!" Even looking for reasons to laugh, smile and nod causes your body to respond as though you were actually doing it.

Be grateful. Gratefulness is another one like laughter that doesn't need a reason. Just looking for a reason is enough to trigger those feel good hormones. Just being grateful is enough, in fact. But finding the reasons increases your good feelings even more. Like other positive behaviors, gratefulness is contagious and so make sure you share. Tell others and give examples. For a real lift, read Lisa Cooke's guest blog entry on an attitude of gratitude. (3/6/2015)
http://lewybodydementia.blogspot.com/2015/03/an-attitude-of-gratitude.html

Use second-hand positivity. We match what we see, so just looking at something positive will make you feel positive. A cute puppy, a picture of a child's happy smile, an enjoyable movie, even a photo of a past happy event. In fact, you don't even need the photo. Just day dream about some past joy and you will get to relive the same happy feelings.

Play. Set aside some time to play, to do something just for fun, whatever that might be for you. Like music and meditation, the relaxation and clarity you get from playing will last for a long time after you finish up and go back to work. That's why kids have recesses!

(reference)

OK, now it is your turn. What do you do to keep on feeling positive?


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

Friday, June 22, 2018

Constructive Caring, #6: Dealing with Externals

The past blogs have mostly been about how you can think and act more constructively and make your own life and that of the PlwD's* happier, healthier and just plain easier. But sometimes, life intervenes and things beyond your control happen that are difficult to deal with. Nevertheless, you still have the power to choose how to deal with these unhappy events. By making conscious choices about how you view them, and how you think about them you can limit their negative effect on you and on your loved one.
  • Look for the blessings. Instead of complaining, look for how the situation adds something to your life...interest, learning, experiences, etc "The worst service I ever had" becomes, "I'm glad we went there. Now I'll know not to go again!" "I lost again. I'm so unlucky." becomes "I sure had fun playing that game with you."
  • Look for the silver lining even when things are truly bad and painful. You will naturally have some negative feelings--and rightfully so. Nevertheless, instead of allowing yourself to wallow in the negativity, look for that silver lining. "My mother has passed away and I really miss her but I feel so fortunate to have had her in my life."."
  • Avoid feeling guilty. People often use guilt as an effort to control past events--it doesn't work. Your guilt will not change anything except to make you feel worse. Instead make a conscious choice to find something to feel better about. Instead of "I feel so bad that I wasn't always a good daughter, think, "We had some great times together."
  • Look for the humor. Sometimes you may have to dig to find the positives but make it a fun challenge. "This trip is so disastrous that I know we'll laugh about later."
Criticism. One of the most difficult things a care partner has to deal with is criticism from family and even friends of a situation that they may not know as much as about as they think they do. Even when meant well, criticism can be difficult to deal with and if a person is already into self-blame, it can be catastrophic. Here are some guidelines to making criticism a little easier to deal with:
  • Listen carefully. This is often the hardest part, especially if you don't believe the criticism is fair.
  • Take a deep breath and think before you respond.
  • Who is this about? "Is this about me, or them?" Is the them the PlwD*, who feels bad, and sees you as responsible for everything. Is the them a family member who is in denial or uneducated about the situation?
  • Can this help me? Even if it is more about the other person than you, could the criticism be constructive? How? Will it add more information, more ideas? Or will it add to your own self-blame, guilt or worry?
  • Choose to reply or let it go. Feel free to ignore a criticism if it isn't helpful.
    --With the PlwD, you may have to respond in some way so that they feel heard, but then you can move the conversation on into something more positive.
    --With uneducated family members who see Showtime** as the PlwD normal behavior, you will have to decide if they will accept or understand further education about LBD. Printed handouts from the LBDA or a medical source may work better than your own explanations.
  • If you reply, stay positive, ask questions as needed and say "Thanks." Saying "Thanks" does not mean that you agree with the person, only that you appreciate their interest.
    --With a PlwD who is blaming you because of a delusion, you must not deny the accusation. Instead, become an improv actor and say you are sorry. (See blogs on dealing with delusions)
  • Review. Make a conscious choice to accept the critique as constructive if you can find anything of value in it. Then plan how you will make any needed changes. Otherwise, consider it destructive and therefore, not worth your time.
  • Let it go. Once you know of the issue (if there really is one), and have decided how to deal with it, the criticism's job is done.
Next week: On to happier topics, like how to have enjoy being positive and have fun with it.

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.

** Showtime: When a PlwD is experiencing a period of more than normal awareness. Often occurs with visiting family members or during doctor visits.

* 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
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, June 15, 2018

Constructive Caring, #4: Changing Habits

OK, you've lowered your stress level, belong to a great support group, and are aware of some negative thinking habits that you want to change. Now what? Will those negative thoughts just disappear? Sorry, it doesn't work that way. Negative thinking is a habit that takes commitment, time and effort to change. However, people do it all the time and you can too!

To change a habit, you need to notice a specific behavior and make a conscious, personal commitment to change it to a viable alternative. Write this down and tell someone else. Then do it. Reward yourself when you succeed and be gentle with yourself when you forget, and keep trying until the change becomes a habit. (Reference)

Now let's break this down:
  • Notice: You have to be aware of what isn't working before you can change it to anything else.
  • Conscious: Negative thinking is often automatic, like a PlwD's.* But because you can think abstractly, you can make purposeful choices that put you on the road to change.
  • Personal: This is about you, not the PlwD or anyone else. Changing for someone else is like trying to make a bed with a ten-foot pole. It can be done, but not very easily, not very well and the effort seldom lasts long enough to get the job completely done. 
    "I will notice when I use all or nothing thoughts and stop using them."
  • Specific: The more specific your commitment is, the more effective it will be. Chose one specific type of negative thinking and focus on changing it to something more constructive.
    "I will notice when I use extreme, all or nothing, words like "always," "never" in my thoughts and stop using these words."
  • Viable alternative: If you try to stop a behavior or a way of thinking without providing a replacement behavior, you leave a vacuum. Your brain will backfire and go into its default mode of worry. The replacement also has to be something that will work for you. If it isn't, your brain will balk again and the change won't happen.
    "I will notice when I use extreme words in like "always," "never" and change them to more accurate words like "sometimes," "this time."
  • Write it down. Once your commitment statement is complete, reinforce it by writing it. Now the information gets to travel to your brain via another pathway. It is also something you can look at every day and use as a reminder.
  • Tell someone else: You are more likely to stay on track if someone else knows about your commitment. Utilize your positive friends as role models and sounding boards. They can also confront any exaggeration of "mistakes" into "failures."
  • Do it. Making a change requires overcoming the fear that you won't do it right, or that you might even fail and practicing the change over and over.
  • Reward yourself. When you catch yourself exaggerating, stop and say something more accurate, give yourself a verbal pat on the back, a compliment--and mean it. "Hey, I did it. I'm getting more specific by the minute!" Your brain views sincere compliments as positively as it does a material gift.
  • Be gentle. When you forget and exaggerate--and you will!--be as compassionate with yourself as you would be with a friend. Use the experience as a learning tool. Feel the guilt long enough to own the mistake. Then worry about it long enough to consider how to keep from doing it again. With that, the value of guilt and worry is over. Let them go.
  • Keep on keeping on. Notice, commit, practice, reward, share, and do it again and again. Don't expect to change overnight. Researchers now say that it can take 2-6 months to change a habit. So be patient, keep working, keep rewarding yourself and keep talking about your successes.
Eventually, you will find that you are automatically using more accurate words instead of extreme words. You aren't making conscious choices anymore, it just comes naturally. It's a habit! With that done, you can start over and change another habit.

With each negative thinking habit you change to something more constructive, you will also experience some longer lasting rewards. Every so often, stop and take inventory. Are you happier? Do you feel better? Is your health better? What about your loved one? Is the same true for them? Are there fewer negative behaviors? Are they more content? And finally, own the constructive changes you've made and give yourself lots of credit.

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

Friday, June 8, 2018

Constructive Caring, #5: Staying On The Path

Blogs in this series have been discussing ways to be a more constructive care partner, how to work towards being more positive. This isn't something that stops. It gets easier, but it still requires vigilance. Staying in that pleasant valley of positivity is not automatic. Roadblocks like stress and isolation still lurk just around the bend, ready to push you back up that mountain of negativity, where the terrain is steep and rocky, the air is thin and the weather uncertain at best. But don't despair, the closer you get to being positive, the easier it is to stay that way. Ways to do that are the focus of this blog.

First a very quick review of some of the stuff in previous blogs:
  • Keep on monitoring your stress, surrounding yourself with positive people, making conscious choices, and turning negatives thoughts into positives ones.
  • Live a healthy life, where you take care of your own health, psychological and social needs as well as you do the PlwD's.
Next, here are some more from one of my favorite bloggers, Eric Barker:
  • Foster optimism. Care partners cam get caught up in irrational expectations, wanting life to go back to how it was. This keeps you stuck in failure and disappointment. Accept what is and you will be able to see many more possibilities.
  • Face your fears. Hiding from fear makes it worse. Face it and you overcome it--and that is a euphoric feeling!
  • Practice spirituality. Whatever your spiritual beliefs, practice them actively. It will give you strength and joy.
  • Use role models. Find people you want to be like and imitate them. If you know some you don't want to be like, use their behavior as a guide for how not to live.
  • Be a lifelong learner. Take time each day to learn or experience something new. Keep your brain sharp and it will give you solutions when you need them most.
  • Be cognitively flexible. Humans tend to find a way to do things and when that doesn't work anymore, they simply try the same thing but with more effort. Be willing to try something else. Step back and look at the problem a different way.
  •  Have meaning in your life. It is easy to get mired in the exhausting, time-consuming work of caregiving. However, the job can also be very rewarding. Take a deep breath and look for the rewards and the purpose. Remind yourself why you are doing this. How does this job have meaning for you? How do you find it rewarding?
It does get easier. With time and dedication, making conscious choices to be positive become habits that seem almost effortless. Well, maybe not THAT easy....you still have to continually deal with all those care partner roadblocks, but that gets easier too. The further out of the bad weather and rocky terrain of negativity you get, the easier the load is, even though you have the same tasks.

Next week: Overcoming the external stuff.

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

Friday, June 1, 2018

Constructive Caring, #3: Conscious choices

The second blog in this series was about a couple of roadblocks to being a more constructive care partner. While it is true that positive thinkers function better over time than negative thinkers, our own brains make that an uphill battle. Last week's blog was about how our brains see negative stuff as urgent and how they resist change. Anything that causes negative emotions quickly and emphatically grabs our attention and is rushed into long-term memory. (Go back and read it if you haven't already.)

This means that without some conscious effort, what we think and say is likely to be mostly negative. Add other roadblocks a care partner faces, such as stress and isolation, and you may feel that trying to think constructively requires far too much effort in an already overburdened life. It doesn't and the rewards are huge. Because you can make conscious choices, you can gradually decrease your negative thinking by consciously doing and saying things that make you feel good, happy and contented.

You can choose to stop a negative thought and choose a different way to consider the issue. Make your goal thinking "in a different way," not "thinking positively." That's because 80% of us have naturally negative brains that get scared about "thinking positive" and backfire with worry. Instead, think "work on changing to something more helpful, something that feels better, something fun even."
  • Be specific and accurate.  Extreme or catastrophic thoughts are usually too polar to be accurate. Being more moderate helps you be more specific, and thus more accurate and allows you to see the positives, and to see the negatives in more perspective. "All the time" becomes "today." "Never" becomes "not right now." "Terrible" becomes "not quite what I had in mind." "Failure" becomes a single mistake.
  • Look for the challenge, instead of looking for the worst that could happen. "I'll never be able to do that," becomes. "What do I need to learn to be able to do that?" "This cake is terrible" might become "I think adding vanilla would improve this cake." "I'm such a failure" becomes "I need to learn more about how to do that job."
  • Be your own friend. When you realize you are put yourself down, stop and say to yourself what you'd say to a friend. Instead of "Well that was stupid!" say, "We all make mistakes." Instead of "I'm just not good at that," try, "I'm still working on that." Instead of "I'm so dumb." try "I don't understand." 
  • Look at the broader view and accept that some things just happen instead of playing the self-blame game. You are not responsible for every little thing that goes wrong. Accept that feeling guilty won't change the past and worrying won't change the future.
Making these changes doesn't happen over night. It takes time to change any habit, and negative thinking is a habit. We used to think it took about three weeks but new research is saying more like two to six months! So give yourself credit for the changing you do manage and keep working at it.
Next: Changing negative habits to more constructive ones.

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

Friday, May 25, 2018

Constructive Caring, #2: Identifying the Roadblocks

The first blog of this series was about the many advantages of being a positive care partner. However, that isn't always easy, as any care partner knows.
  •  Living with negativity can be like being is high on a mountain, where there isn't enough oxygen, the path is steep and rocky and the weather is so bad that you can't see more than a few feet in front of you.
  • Every step you take is scary and every step gets harder because you are getting more and more tired. But you feel stuck. You feel like you just have to keep climbing. 
  • But you don't. Once you recognize your power of choice, you can stop, make a conscious choice to be positive and head back down the mountain. 
  • The weather will get better, your path will be less steep, the scary rocks will turn to gravel and your energy level will improve. 
  • Being negative uses up your energy and makes you feel tired and hopeless. The longer you stay negative, the harder life gets. 
  • In contrast, the longer you stay positive, the easier life gets. You literally do have more oxygen, for example. You still have the same tasks but they seem easier and more doable.
This blog discusses some of the roadblocks that keep you from getting down that mountain where positivity makes life easier.

Roadblock #1: Stress. Choices, especially conscious choices require abstract thinking. That's something we learn to do as we grow up and use all the time without even realizing it. However, when you get so caught up in caregiving that you become stressed and overwhelmed, you lose the ability to think clearly or be flexible.
  • These stress-related, dementia-like symptoms immobilize you and keep you stuck making the same choices you've been making, even when what you are doing becomes continually harder and less rewarding. 
  • You will likely need help to escape the stress/negative thinking/more stress cycle. This is often a crisis of some sort. Sometimes, it is a confrontation from family or friends but all too often it is an accident, such as a loved one's fall or the care partner's injured back. 
  • Once you've decreased your overwhelming physical, emotional and mental burden, you can do other things. But getting help comes first. Care partnering is not a one person job. 
GET THAT HELP!

Roadblock #2: The company you keep. As humans, we tend to pick up and reflect the attitudes of those around us. Like yawns, both negative and positive emotions are contagious.
  • Round one: When the PlwD* loses the ability to make choices, negative thinking becomes their norm. As their closest companion, you will pick up and experience that negativity too.
  • Round two: An expert at perceiving other's feelings, The PlwD takes on your negative emotions as their own and mirrors them back to you, often as BPSD.*
  • Round three: You react negatively to the behaviors and it goes on and on, round after round.
But you have the power of choice! You can choose to interrupt this cycle.
  • Add positive people to your life, even if just online. 
  • With them as role models, you will find it will be easier to combat that immobilizing stress, think more positively and then feel better. 
  • The PlwD will mirror your positive feelings just like they did your negative ones and they will feel better too.
VIEW HAVING POSITIVE PEOPLE IN YOUR LIFE AS IMPORTANT AS GETTING THE RIGHT MEDICAL TREATMENT!

Roadblock #3: Isolation. Reaching out may not be all that simple, however.
 Caregiving is demanding in time and energy, and "adding positive people to your life" may take a back seat to the other jobs you have to do. Then, when you do, it isn't unusual to find that old friends or even family can't relate with the things that take up your attention or worse, that they don't understand.
  • And so you stop reaching out and isolate yourself that much more. It becomes easier and easier to feed into that cycle of negativity between you and your loved one. 
  • That's where support groups come in. If you are fortunate, you have family and/or friends that can be there for you in a positive way. But often, no, usually, you need more. 
  • You need to connect with people who are experiencing the same things you are and are still managing to be positive. Even if you have a hard time getting out, you can go online and connect with positive people there. Many care partners use both local and online groups. 
FIND A CAREGIVER SUPPORT GROUP AND PARTICIPATE.

Roadblock #4: Our basic negativity. Negative emotions are naturally strong. They need to be to get your attention in times of danger and push us towards safety. These stronger emotions can take over, especially in times of stress, requiring you to make conscious choices to change from being negative to being positive. The next blog is about how you change the way you think so that you can turn around and go back down that mountain of negativity.

*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, May 18, 2018

Constructive Caring, #1: Introduction

This is the first blog in a series about being a constructive care partner. At one time, I'd have said it was going to be about being a positive care partner, but times have changed. As researchers learn more, we learn to use different words. We all hear a lot about the value of being positive and it's all very true. Being positive makes you happier, healthier and even smarter. And, it makes you a more effective care partner. The more positive you are, the happier and more content your loved one will be.

But there's a glitch. Most people (80%) have brains hard-wired to be negative. Add the normal stress of caregiving, and even the few naturally positive care partners more likely than likely have negative brains. Telling a negative brain to "be positive" is too big a leap; it shorts out and goes into "worry," its default mode.

"Being constructive" is about working towards a goal, about gradually building a better life for you and your loved one, not a done deal like "being positive." That's our first work-around--watch for others! Negative people still have positive feelings--they just need noticing and nurturing. Sometimes, these get lost in the business of living, when the logistics of caregiving get in the way and the "fun" things aren't even noticed, let along enjoyed. (Reference)

The problem with negative emotions is that the brain views anything causing them as dangerous and therefore, urgent. These feelings grab our attention quickly and emphatically, overshadowing everything else. Then this "urgent" information gets pushed immediately into long term memory, bypassing much of the abstract thinking that keeps us on an even keel. Thus, negative thinking can be similar to that of the person living with dementia--and of stressed-out care partners: general, polarized, catastrophic, and personalized.

In contrast, equally important but non-urgent positives are processed slowly. Even after they get past those grabby negative emotions and manage to attract your attention, you have to keep them on your radar for over ten seconds to be remembered. A lot can--and does--slip by in that time. Work-around #2: Make a conscious choice to be aware of words, things, people and events that make you feel good. Once you notice them, make a conscious choice to pay attention to them and enjoy them.

"Why?" you ask. "Why should I spend my already limited time and energy on this? Why not just flow with it and accept the pain, the anger, the worry, the fear? Isn't that real life? Isn't it rather Pollyannaish to try to make it all more positive, uh, constructive?"

Ah, but Pollyanna was a happy person! The advantages of being happy are great for the individual and even greater for a dementia care partner because you are "feeling for two." That is if you choose to be happy, your loved one will mirror this and feel happier too. That's the first advantage, but there are a lot more:
  • Your loved one's happier, more content attitude will result in fewer dementia-related behaviors.
  • With less energy wasted on energy-hogging negativity, you will actually have more energy for your job, your loved one, others, yourself and life in general.
  • You will be healthier. Positive people are less at risk for most diseases, including dementia.
  • You will be less stressed, thus have more energy and clearer thinking.
  • With a clearer mind, you will see the broader picture and make better decisions.
  • You will accomplish more, resulting in better self-esteem.
  • You will feel emotionally stronger and better able to face the tasks you must do.
While caregiving can still be overwhelming, you will find it easier when you do it with a positive, can-do attitude. The more positive you become, the more others will enjoy being around you and you'll find that your positive attitude will rub off on them.

Next week: more about negativity and making conscious changes.

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
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, May 4, 2018

Dental Care

You may have noticed that your loved one isn't brushing their teeth so much anymore. Dental care is important for a variety of reasons. The bacteria from inflammation of the gums and dental plaque is linked with heart disease, pneumonia, stroke, diabetes, dementia and rheumatoid arthritis. It is important to maintain good dental hygiene and continue regular checkups. However, this can all become difficult and easy to skip.
  • If LBD* is involved, they may have forgotten the steps involved in brushing. "Do I put the toothpaste on the brush before or after I rinse it off?" "How do I brush?" "What do I do with all the fluid and foamy toothpaste that ends up in my mouth?"
  • Age, illness, some medications and dementia itself can decrease saliva output, creating "dry mouth" which can make toothpaste and mouthwash taste different, and possibly unpleasant. The efficiency of taste buds also fades with age, changing the person's taste preferences.
  • Your loved one may no longer understand the need for brushing and may not want to be bothered, especially since they may need to be helped to do it correctly. 
As you do with other activities of daily living, encourage the PlwD to do as much brushing and flossing as possible on their own and help only when you really must. Here are some tips that may help if you have to do the brushing:
  • Monitor your attitude. Make this as fun as you can and it will be much more pleasant for both of you. Try not to argue or be bossy. If, for instance, it feels awkward to do something so personal for a parent, get over it. The more comfortable you are, the more comfortable the PlwD will be--and the more accepting of your help.
  • To address the dry mouth issue, have your loved one rinse their mouth with water right before starting care.
  • Have them sit in a comfortable chair with you seated slightly behind them.
  • Use a soft toothbrush to gently but thoroughly brush their teeth.
  • Be careful not to tilt back the head when you brush. This can cause aspiration of liquid into the lungs.
  • An electric toothbrush is usually faster than doing it by hand and therefore, less annoying. If the noise of the brush or the vibrations produced by the fast-moving bristles is upsetting, you may have to revert to using a regular toothbrush.
  • Experiment with toothpastes and mouthwashes to find ones the PlwD likes. Brushing without toothpaste is still very effective. Mouthwashes help to control bacteria, but may irritate the gums. Try diluting the mouthwash with some water or else try another brand. Stop using mouthwash if it becomes an issue.
Thanks to Health After 50's article on Dementia Care: Oral Hygiene for most of the information in this blog.

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

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, 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, April 27, 2018

Choosing Your Attitude, Part 4

This is the last 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, our own multi-series blog on the subject will start in May. The second and third blogs in this series were about being perceptive and being persistent. This week, it is about personifying the disease. We've often taught care partners the mantra "It's the disease, not the person," but Pat takes this a step--or more-- further. She makes some good points!

Personify the Disease

One of the most helpful decisions I made early in my Lewy Body Dementia journey with my husband was to personify “Lewy”. It had a huge impact on my grandsons as well as on John and me.

John’s neurologist, Dr. Daniel Kaufer, told us on our first appointment with him that preserving personhood was our key goal for John in all decisions about his care. That resonated with me. It became my touchstone when I had to decide what to do as various symptoms and events presented themselves in our journey.

In my mind, I separated John from his disease. I gave the disease a personal kind of name---Lewy. It gave me someone to blame, who clearly was at fault for whatever was happening. It gave me the power to separate John from actions or words he might do or say that were hurtful. “That’s Lewy talking right now. Just ignore it.” I could say that to myself and know that I was correct. John was not at fault. Truth was not being spoken. A clear enemy was in the room with us, and my job became how to outsmart that enemy. It gave me emotional distance so I could think clearly, problem solve better, and respond kindly to John.

I saw it as a kind of psychological and emotional warfare for a good purpose. Although my enemy was formidable, I still won significant battles along the way that made our overall experience of LBD less damaging to both of our lives. There was victory and empowerment in winning those battles. I was preserving personhood for John and for myself by personifying Lewy.

It also worked beautifully with our grandsons, who were young when John had LBD. When the oldest, Michael, was about five years old, he was chatting happily in the backseat of our car as we drove along a lovely country road.

All of a sudden, John barked at Michael harshly and told him he needed to be quiet.

Before I had time to think it through, I spoke up and said, “Michael, that is just that mean old Lewy talking to you right now. Your Pops would never talk to you like that. Pops loves you, Michael.” Fortunately, John responded with silence.

This caused me to begin using the “mean old Lewy” explanation with all the grandsons from that point on. I would tell them if they entered the room and Pops looked angry or spoke harshly to just leave the room right away. “That was Lewy, not your Pops. Wait a bit and go back to see Pops later.”

The boys all seemed to accept that explanation as making complete sense to them. It likely worked because it matched what happened to them. They would reenter the room later and find their sweet Pops happy to see them as usual.

Sometimes I would speak to John and remind him to be especially kind to the boys. We also tried to have only one child at a time in the room with John if he was agitated or tired.

Another example shows how personifying Lewy played out with John. One day John began to have trouble speaking. He babbled a kind of gibberish.

I touched his head tenderly and said, “Sweetheart, I can see that you know exactly what you want to say. Right now Lewy is messing with the connection between your thoughts and your ability to speak. Close your eyes, take a nap, and when you wake up you will be able to say whatever you want.”

John closed his eyes immediately and went to sleep. When he awakened, he was able to speak normally. That level of trust had been established over a period of years along with the habit of blaming Lewy when a bad symptom presented itself. John had learned that Lewy came and went, and he trusted me to point that out for him. It seemed to keep his anxiety lower.

Personifying Lewy gave the boys more of a sense of empowerment. They clearly stopped taking it personally when John’s disease made him appear mean to them. It also gave them someone to blame for what was happening. It made everything make more sense somehow for all of us while it protected John from the blame he did not deserve. Personifying Lewy enabled me to do a better job of separating the disease from my husband, thereby preserving his personhood while protecting my own heart from being bruised by some of Lewy’s antics.

The steps in the last four blogs (be positive, be proactive, be perceptive, be persistent and personify the disease) lay a foundation for a gentler journey. If you missed any, be sure to go back and read them. Pat finishes her class by telling her students that each step helps them stay ahead of the disease, have more control over their lives and make you a better caregiver.

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 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

Friday, March 2, 2018

SLEEP – THE BODY’S HEALING TIME & HOW TO MAXIMIZE IT

This week, our Alternative Therapy Consultant, Regina Hucks, shares some ideas for using a variety of alternative therapies to help persons living with dementia (PlwD)get a better night's sleep. 

Problems with sleeping or late evening agitation are often a stage in dementia that eventually passes. Many people with dementia sleep more during the latter stages of the condition. Sleep problems are among the most difficult symptoms of dementia. Families and caregivers must be able to get adequate sleep themselves. Try to ensure regular periods of rest and regular breaks for yourself, as well as for PlwD.

Alternative Therapies benefit both the PlwD and their care partner:
  • Exercise, Grounding and Balance 
  • Essential oils that calm, promote sleep, alleviate pain and bring balance back into the daily / nighttime routines are natural and effective.
  • Music / Sound Therapy work with specific frequencies that affect brain function and can promote sleep.
Exercise, Grounding and Balance: It’s important that both caregivers and PlwD be balanced and grounded.Set up a daily routine, incorporating the following regime:
  • Try to make sure you both are getting enough exercise. Try taking one or two walks each day. If the PlwD is not independently mobile and confined to a wheelchair, by all means just getting them out into fresh air helps to ease and relax mind and body.
  • Find a place where there is grass and each day, preferably morning and late afternoon, go to this place and take off your shoes…yep yours and theirs! Allow the bare feet to sit on the grass or dirt. Walk around if you can. The earth resonates at a frequency that is highly beneficial to the body helping to ground and balance the body’s systems. This action impacts the sense of touch, sight and smell. The smell of fresh mown grass, rain, flowers and even dirt, to many, can be relaxing and grounding. Connecting to nature is very beneficial.
Essential Oil Therapies to calm, aid sleep or to calm and improve energy and focus.
  • Review the article on my blog regarding Touch Therapy / Massage Therapy for pictorial information on hand massages and determine what you want to accomplish. 
  • For sleep, use these techniques in the evenings or prior to an afternoon nap. 
  • To improve energy and focus, use them in the mornings or mid day depending on what you want to accomplish.
  • Consider scheduling a hand massage in the morning before an outside jaunt or just before an afternoon nap and most definitely in the evenings before bedtime.
  • Try a back rub before bed or during wakeful periods. Using this as a preventative measure helps to reset the body’s clock and get sleep patterns back on track.
The following is a list of Essential Oils that will serve to help reset the body’s timer for appropriate sleep cycles. Some should only be used at night and others during the day.

Please NOTE: Not all essential oils are alike and most purchased in stores contain chemicals that can be detrimental to topical applications and cannot be ingested. ALWAYS check the labels. Look for Nutritional Information on the label. The Essential Oils I have recommended here are safe, effective and are Certified Therapeutic Grade. Most are ingestible; use them for teas or for cooking. To read more about these oils, please click here.

If you have ANY questions about the safety or efficacy of these oils, please don’t hesitate to contact me at regina@lbdtools.com .  If you are asking for information, please include as many details about what you are seeking information for. The more I have to work with, the better the information I can give you. Also, remember to please include your email address.

The following Essential Oils can be used topically (hand or foot massage) and Aromatically (in a diffuser). Diffusing provides greater coverage and at night will help to induce longer periods of sleep.
If using topically, always use a carrier oil. I recommend Fractionated Coconut Oil in a ratio of 5 drops carrier oil to 3 drops Essential Oil, unless otherwise noted.
  • Lavender will calm but may also relax so much that you may want to relegate it to nighttime or nap times, to promote deeper sleep.
  • Balance  is excellent for daytime use and will promote improved physical balance as well as mental balance
  • AromaTouch is an exceptional oil blend that is a mild relaxer but also aids in eliminating pain. This can be used in the daytime and at night as an analgesic in place of aspirin, ibuprofen, Motrin and Tylenol. Side Note for Parkinson’s sufferers: Mix 3 drops Aroma Touch to 5 drops Fractionated Coconut Oil and spread down the spine starting at the base of the neck down to the tail bone. I have seen up to 8 hours relief from tremors.
  • Serenity  promotes deep relaxing sleep and is my absolute favorite for nighttime use.
  • Lemongrass. Fresh lemon grass is often added to teas or lemonade to promote relaxation and calmness. The scent can relieve anxiety and promote restful sleep among PlwD. Try diffusing it with other citrus scents like sweet orange to boost your loved one’s energy levels and mood.
  • Clary Sage is beneficial for PlwD. Added to a diffuser, it promotes better cognitive function and enhances mood. Blend it with other essential oils like Peppermint and/or Rosemary to create an herb-based scent that boosts memory and promotes a calmer, more optimistic mood.
  • Bergamot is a warm floral scent that reduces anxiety and stress and encourages a calmer, more relaxed mood. The flowers are often added to tea, including classic Earl Grey blends. Add one to three drops of the essential oil to the bath, a diffuser, or combine with an ounce of carrier oil to provide the soothing benefits.
  • Chamomile. Dried chamomile flowers are well known for their pain relieving and stress reducing properties. Add a few drops of chamomile essential oil to 5 drops of carrier oil, and use the blend for hand massages to enjoy the same calming benefits.
  • YlangYlang reduces anxiety, boosts mood, and promotes restful sleep, making it an excellent addition to your loved one’s bedtime routine. Use it in a diffuser immediately before bed to help your loved one fall asleep easily. If they are agitated, a short hand massage with ylang ylang essential oil in a carrier oil base can calm their mood.
  • Rosemary has been found to stimulate memory, making it one of the best essential oils to incorporate into a PlwD's aromatherapy blends. Combine with peppermint to stimulate cognitive function and increase energy, or blend with lavender to calm.
  • Peppermint is an invigorating scent that boosts cognitive function while encouraging feelings of calmness. Diffuse it in the morning to begin the day with relaxed energy, or diffuse it anytime a PlwD begins to feel tired or agitated.
FOR PAIN AT BEDTIME, try these analgesic remedies before resorting to pharmaceuticals and especially before using a sleeping drug.

Deal with the anxiety: Anxiety inevitably accompanies pain regardless of the type and relieving the anxiety first is half the battle.

Deal with the pain: Find out where it is and if it is Joint, Nerve, Muscle or Bone Pain. Use the following combination of Essential Oils based on what is needed.

PAIN RUB: (Joint / Nerve / Muscle)
  • Mix 3 drops Fractionated Coconut Oil with 1 drop AromaTouch in the palm of your hand and rub gently on the affected area.
  • Next, put 2 drops Serenity into the palm of your hand and rub over the affected area layering on top of the Aroma Touch.
  • (Additional carrier oil is not needed with the second layer unless the skin is exceptionally dry and it quickly absorbed the first layer.)
A PRE-MIXED ROLLER BALL FOR PAIN ANYTIME: (Joint / Nerve Bone)
  • A great addition to any medicine cabinet is a pre-mix roller ball called ‘Past Tense.”Originally designed to relieve headaches and neck and head tension (which is does), I have found this particular Essential Oil blend to be HIGHLY effective on joint, nerve and bone pains. Just roll on the affected area and gently rub in!
NIGHTTIME PAIN: (Joint, Muscle, Nerve, Bone)
  • Mix 3 drops carrier oil with 3 drops Lavender and 3 drops Peppermint. Rub on affected area
HERBAL TEAS and warm milk may be helpful.

SOUND THERAPY
  • Soothing high frequency music (these can be downloaded free from You Tube) ie:
  • https://www.youtube.com/watch?v=W3qJHIb1lyI
  • https://www.youtube.com/watch?v=Yc94ZofWHBM ***
  • https://www.youtube.com/watch?v=17RB5oq_yAY ***
***If using a type of high frequency music, it is best to use headphones or earbuds to gain the greatest benefit from the frequencies.

IN CLOSING: The goal is to establish a familiar daily routine that will aid in emotional and physical comfort and when the routine is disrupted for any reason, any negative emotional and physical response will be minor and limited. The use of Essential Oils and Music as two primary Alternative solutions WILL provide balance, structure, and enhanced emotional, mental, physical and spiritual comfort.

Only the last part of Regina's article is here. Do go to her blog,  Alternative  Therapies for Dementia and read the what you missed!

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 and Regina Hucks 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.