LBD and Non-Drug Pain Relief

Last October's four blogs reviewed variety of pain-relieving drugs and found most of them to be lacking where LBD is concerned, and actually for the elderly in general. So what's the answer? Live with it? Hardly. Pain makes LBD symptoms worse and we surly don't want that. But there are some options. None of them are as easy as taking a pill, and it will probably take you a while to discover which one works best for you and your loved one.

Heat...and cold. Apply a heating pad to the painful area for about 20 minutes at a time. Even better, alternate heat and cold treatments, with a few hours between each application. Cold compresses should be icy cold, with a cloth buffer between the compress and the skin. Leave it on for no more than 15 minutes. Allow at least an hour between each application.

Physical remedies:

Stretching exercises. This is my favorite and I find it especially good for arthritic pain. I stretch my legs, arms and back (individually) as far as I can, relax and stretch again for at least ten times. It usually hurts at first, but whatever I'm stretching tends to feel better the more I stretch. If it hurts more instead of less, stop. I find that by the time I'm done, I can move much more easily and I have less pain. This works best when you do it yourself, but you can also help another person, such as your loved one, stretch.

Exercise. The more a person exercises, the better their body can handle pain. Be sure to choose a type of exercise that is supportive of your body. For instance, running isn't the best for a big-busted woman...or someone with artificial knees, but water exercises work well for just about anyone.

Physical therapy. This teaches exercises that help to improve movement and strength. It is especially helpful with reduced activity levels or a decreased exercise tolerance. A physical therapist will know just which muscles to move to provide the best pain relief for a specific situation.

Occupational therapy. This helps people to find less painful ways to perform activities of daily living.

Acupuncture and acupressure. These can provide temporary pain relief from conditions such as arthritis. Acupuncture requires a trained professional but caregivers can learn basic acupressure techniques.

Massage. This may help relax tight muscles and decrease pain. Use a few drops of soothing essential oils with this to increase its effects. This can also be a wonderful together time of touching and gentle talking. You could even add some guided relaxation as you massage. (See below for essential oils and guided relaxation.)

Other ideas:

Music. This helps to increase energy levels and improve mood. It may trigger the release of endorphins, natural pain reducing chemicals.

Laughter. Laughing and even smiling helps you let go of stress, anger, fear, depression, and hopelessness, all of which increase pain.

Guided relaxation. Gently talk to your loved one, telling them to think of something you know would be especially calming for them. You can find scripts for this at Inner Health Studio.

Essential oils. The five most mentioned oils for pain relief are wintergreen, spruce, lavender, marjoram and sandalwood. Go to organicfacts.net for more about each one of these and how they can be used. This site lacks an index but you can enter the oil in the search box to find it more easily. Add a few drops to a diffuser for aromatherapy, or to coconut oil for massage. Be aware that some oils, lavender in particular, may have an opposite effect if you make it too strong.
https://www.organicfacts.net/health-benefits/essential-oils/list-of-essential-oils.html

Aromatherapy. This is the use of essential oils diffused into the air. It is one of the easiest ways to use these oils.

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

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

Guilt, Worry and Anger

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

Guilt

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

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

Worry

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

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

Anger

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

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

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

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

Conscious Choice and Gratitude

For the past few weeks, Geroge's caregiver, Mary, has been learning ways to decrease her situational depression by using her ability to make changes in the way she thinks and responds to her feelings. She's learned to talk and write about her feelings, good and bad. Last week, she learned to laugh more. This week, she is working on making conscious choices and being grateful.

One of the abilities that LBD takes away is that of being able to make choices. With LBD, what you feel is what you get. While it is still true that Mary will feel whatever comes up for her, she doesn't have to stay with it. She can make a conscious choice to change the way she views the situation and generate a more positive feeling. Conscious choices require thinking. They are different from the automatic reactions that are Mary's (and anyone's) first response, and George's only response, to a feeling. They also require the ability to initiate, something else LBD has stolen from George. But George can still follow, and so when Mary changes the way she responds to a negative feeling, George is often able to follow suit.

Making conscious choices. This ability to change one's view of the situation is especially important when Mary begins to feel overwhelmed and discouraged with her job as caregiver. Doing something for someone else can be very uplifting. However, Mary won't feel better about doing things for George if she feels she has to. Then each chore is just one more burden, one more step deeper into depression. But if Mary steps back and remembers that this is a job she chose, she will be able to deal with it better and her depression won't get worse.

Reaffirming past choices. Like many caregivers, Mary made a choice to be George's caregiver when he was diagnosed. "I don't want anyone else caring for my George. This is my job," she said. Of course, when the caring gets rough, it is easy to forget this. Therefore, Mary must consciously remind herself of that earlier choice. She might prefer to be on the cruise they had planned, but, of the choices available to her now, this IS the one she has chosen--and the one she chooses again now. Mary's conscious reminder gives her back a feeling of being in control. With this, her job feels less burdensome even though nothing else has changed. Then, because Mary is more positive, George's anxiety decreases and so do his symptoms.

Gratitude. Like making choices, gratitude requires conscious thinking. That is, Mary has to consciously choose to be grateful--it is not a reflex action. But when she does choose to feel grateful, it helps to unblock Mary's depression-suppressed production of the pleasure-enhancing chemical, dopamine. When Mary's gratitude is directed towards others, it triggers paths in her brain that increase her ability to enjoy other people, something else that depression suppresses. As with any feeling, it also works better when she puts what she is grateful about into words. Because it is a positive feeling, Mary can share her gratefulness with George and he will feel better too. Then, Mary reinforces this by writing about it in her diary.

The best part is that like laughter, gratitude doesn't have to have a reason. Just looking for something to be grateful about triggers the dopamine, and those pleasurable feelings. It also requires Mary to think about the positive aspects of her life which triggers the production of serotonin, another "feel-good" chemical. Mary has now added "the attitude of gratitude" to her routine, along with the laughter yoga she learned last week. Every day, she takes a few minutes to think about what she's grateful for. Even if the day has been awful and she can't think of a thing, the searching for it is enough to help. Of course, finding something is even better.

Of course, these techniques aren't the whole answer. Mary must still take care of herself in other ways like having enough help, getting enough exercise and maybe even talking to her doctor about antidepressants.

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

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

Using Humor and Laughter

Mary, George’s caregiver, is learning how to use the connections between feelings and thinking to decrease her bouts of situational depression. Last week, she learned about how talking about unpleasant events and giving names to negative emotions decreases their power. She also learned the talking about happy events made her feel even better…and that writing about both could also be helpful. She learned to do her work with the negative emotions away from George because he’d take it all personally, but to include him in her positive stuff because it would make him feel better too.

Mary is still working on using emotions to decrease her depression. This week, humor is the subject. Humor is a multi-part process:

1. Something "funny" – “How do you stop an elephant from charging? Take away his credit card.” This joke contains something that doesn’t fit our preconceptions, and a resolution. Mary knows she can’t stop an elephant with a piece of plastic, but when she changes the meaning of the word “charge” then it works—and she laughs. Humor can also be simpler, or “slapstick.” Someone else gets a pie in the face, stumbles and falls, or gets embarrassed. Mary sees someone in one of these uncomfortable situations and laughs, mainly as a response to the relief that it's “not me.”
2. Perception and understanding. Obviously, understanding the elephant joke requires thinking skills. That’s why George often doesn’t see the humor in things. But he still understands slapstick humor which requires less thinking.
3. Appreciation: When Mary “gets” a joke, her brain rewards her with dopamine, which among other things, makes her happier. However, depression tends to attack the areas of the brain that secrete this neurotransmitter. Thus Mary may get the joke, but won’t be able to appreciate it. The good news is that if the joke is funny enough, other areas of the brain come into play to help the normal dopamine secreting centers overcome the blockage. George has PDD, the kind of Lewy body dementia that starts with Parkinson’s. With PD, Lewy bodies attack dopamine and so there is already a limited amount available. Thus, even if George understands the joke, it may not seem funny to him. His dopamine production isn’t blocked, it is depleted.
4. Expression: Laughter and smiling require motor and language abilities that Mary has but George is losing. Depression seldom affects motor abilities. George’s PD does. He may be able to understand a joke and even appreciate it but have difficulty demonstrating that he can. Mary can watch for other non-verbal cues, like a thumbs-up signal.
5. Better mood—and health. Laughter is healing. It stimulates Mary’s brain to secrete endorphins like serotonin which increase happiness and decrease depression. These chemicals also improve Mary’s general health by boosting the immune system. Finally, the very act of laughing brings more oxygen into Mary’s body and stimulates motion, stability and balance.

Now all of this may sound very complicated. But actually, there’s a shortcut. Mary can skip to step 4, and simply laugh. It doesn’t really matter what she laughs about. She can just laugh, laugh til her sides split. Her brain cannot differentiate between pretend and genuine laughter. And the more she laughs, the better she will feel.

Laughter is contagious and so if she does it with George, he’ll soon be laughing too…or doing his best to do so. Of course, Mary must be careful that George doesn’t think she is laughing at him. A good way to do this is to laugh at LEWY, and the problems IT causes…not George.

Mary has become a convert to “Laughter Yoga,” started in Florida in 1995 by Dr. Madan Katarina. It is a combination of clapping, breathing and laughing. Motion creates emotion. Breathing increases the oxygen in the blood. And laughter, well, we already know what it does!

Give Laughter Yoga a try—It’s easy and fun. You can do it in a group or at home, alone or with your loved one. It is almost too easy to be effective. But try it and see what you think.

• Clap your hands in rhythm: One, Two -- One-Two-Three! (repeat 2 times--or more)
• Now laugh in rhythm while you clap: "Ho, Ho — Ha-Ha-Ha!" (repeat 2 times--or more)
• Expel all the air from your lungs and pretend you're smelling a flower." (Hold an imaginary flower to your nose and exhale and inhale several times…remember to breath out longer than you breath in to prevent hyperventilation.)
• Now, laugh from your heart: Place your hands on your heart and laugh…and laugh.
• Now, laugh like you don’t care:. Throw up your arms high and laugh even louder. And laugh and laugh.

I'll bet you feel better, happier, more energetic, less stressed.

There’s more! Next week, I have still more to share about making emotions work for you instead of against you.

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

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

Using Feelings-Thought Connections with Caregiver Depression

Mary is back this week. She's George's caregiver. Mary, like most dementia caregivers, has periods of depression. No surprise! This was not what she had looked forward to in her Golden Years. Instead of the Caribbean cruise she and George had planned, she's cleaning the bathroom floor. Instead of playing cards with friends, she's watching TV alone while George sleeps restlessly in the next room. Instead of the intimate lunches she and George used to enjoy, she's dealing with George's delusions of her supposed infidelity. And so on. Day by day, she watches the person who was once her major support disappear further into his Lewy fog.

Past blogs have discussed the way George can't change the way he responds to his feelings. Mary can. Mary can choose to make changes in her daily life that will decrease her depression. In the 9/25/14 blog, exercise, socialization, being positive and medication were suggested. Today's blog focuses on the connections between emotions and thinking, and how Mary can use these to decrease her situational depression. (See the 9/25/14 blog for the difference between situational and chronic depression.)

Negative emotions are motivators. However, when they become overpowering, they may, like too much stress, be immobilizing. It's sort of like PD rigidity, where the brain demands that the body move faster than it can move. With Mary's depression, she is experiencing more uncomfortable negative stimuli than she can deal with, and so her feeling center shuts down. Mary's negative aren't so stressful anymore, but sadly, she also doesn't experience those warm, fuzzy happy feelings either.

In the past Mary buried her unwelcome feelings, thinking, "Why should I give them space in my life? I'll just not think about this and it will all go away." But they don't go away. Mary's buried feelings simmer like a pot of soup on the back burner of the stove. Then they boil over when Mary's stress is so high that she isn't able to keep them in tamped down, causing even more stress. But there are some things that Mary can do.

• Talking about those negative feelings reduces their power. When Mary gives names to her negative feelings, the action moves from her brain's feeling areas to its thinking areas--and her view of the event becomes more objective than personal, and therefore, less painful. Mary needs to put her feelings into words, even if she does it by talking to herself. (Mary should NOT do this with George; he will take her feelings personally, expand on them, and make them worse for both him and Mary.)
• Talking about positive feelings increases their power. It causes the brain to secrete serotonin, a chemical that increases happiness. One might think that since talking about negative feelings reduces their power, it would do the same with positive feelings. But this isn't the case. Sharing them with George will cause his brain to secrete serotonin and he'll feel happier too! And of course, Mary should not limit her sharing to just George. Like yawning and measles, happiness is contagious. But unlike those, it is a great thing to catch!
• Writing about difficult stuff makes it easier to handle and writing about good good stuff makes you happier. Like many caregivers, Mary keeps a daily diary where she documents all the things she may need to show to a doctor or family member later. It is also a good place for Mary to vent--and to share her successes and other positives. This is another way for her to get those negative feelings into words and decrease their power. Writing about the positive experiences will cause Mary's brain to secrete serotonin just as it did during the event itself. Reading it later will too!

Next week, I'll add a few more feelings/thought ideas for decreasing depression. Remember, these ideas aren't the whole answer. They are just some suggestions that might help.

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

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