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

Friday, September 14, 2018

Reminiscing

We just attended a family reunion and so I’m thinking a lot about family connections. One of our favorite things to do is to listen to my 96 year-old brother tell us about earlier times. He is cognitively healthy, but even those with dementia can often share experiences from the past. They may not be able to remember recent events, but they can often remember more distant ones. Take advantage of this to document family history. Your loved one will enjoy the chance to reminisce and you will learn things about your family that you can pass on to your younger relatives.

No matter how you go about reminiscing, do take notes. If you feel uncomfortable writing, or if they feel uncomfortable with you doing so, consider a tape recorder. Actually, most cell phones have the ability to record now. Set the recorder up within easy hearing distance and in a few moments, both of you will have forgotten it. You can also video, but that is more intrusive, and harder to ignore.

Start a conversation about the past. Once your loved one has started talking, avoid interrupting as much as you can. For example, only ask questions that keep them talking. Be careful about asking clarifying questions because they interrupt the flow of memory and may cause even more confusion. Just relax and find someone else to quiz later. A note here. Dementia often causes times to be confused. In her nineties, my mother used to tell me stories about when she was a child…but she’d have people from the present, such as my brother, in the story as well. Don’t try to correct. The goal is to provide your loved one with an enjoyable time, and the two of you of a fun time together. The stories you get are bonuses!

Use photos. A wonderful way to get anyone to talk is to bring out the family album…or often that overflowing box of unfiled photos. Ask your loved one to tell you if they recognize anyone in the photos. If they do, they will often tell you something about the person as well. Keep your notebook handy! Again, once they start telling a story, avoid interrupting. Don’t worry if they get off track, or if like my mom, they get mixed up. As long as they are sharing memories with you, it’s good. The upside is that your loved one may put a name to some of those until now, unknown people in your photos. Most of your newer photos are computerized. If you are like me, you’ve uploaded most of your old ones as well. Consider making a special file of the photos that would be of most interest to your loved one. That way you won’t confuse them with unwanted photos flashing by as you look for one you want to talk about.

Use music. For this to be effective, you need to know what kind of music you loved one likes. Play the music and ask them to tell you about it. To get them started ask questions like what kinds of activities did they do when that music was popular, or what does a song mean to them. Have the words to the songs available and sing along with your loved one. It doesn’t matter if you can sing or not…or if they can, for that matter. The goal is to have fun with the music. Don’t neglect rhythm. Some people are more into rhythm than they are melody. Clap, tap your feet, even dance with them. My mother couldn’t carry a tune but she loved to sing and dance. Even when she was in a wheelchair and couldn’t recognize her grandchildren, we danced. It was a time both of us valued.

The next blog will be about other ways you can work with your loved one to help them to reminisce while adding to your own family history.

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, August 31, 2018

Dementia Risks made Personal

August is a celebration month for us in many ways. Both our birthdays are in August. So is our anniversary. Besides these, we are usually traveling in our RV and meeting up with friends and family that we don’t get to see the rest of the year. All of these things are fun for us. We still enjoy the excitement of celebrating holidays, the variety of being on the road and the crowds that we often encounter. We don’t enjoy so much the challenges that RVing often brings…the flat tire, the refrigerator or furnace that quits working, etc. But we can cope and get on with our lives.

However, we know that if one of us had dementia, that wouldn’t be the case. Too much excitement would bring on difficult behaviors. So would too many people. And the number of people who make up a “crowd” shrinks from many to as few as three or four. There’s also the possible frustration and pain of finding that you or your loved one no longer recognizes a dear relative that you haven’t seen for a while. As for variety and the challenges, anything that deviates from the norm is too much challenge, and no longer fun or even practical. Once enjoyable travel becomes an unwelcome effort and it is better to stay home and invite friends and relatives to come visit you, a few at a time. Dementia doesn’t stop a couple from enjoying life, but it definitely requires you to make changes in the way you go about it.

Our birthdays remind us that we are both at risk for dementia. Age is a major factor, and we are both well past 70. We do have other age-related issues, and some of these are also risk factors for dementia. However, although we are super aware of the possibility, our occasional lapses in memory don’t yet add up to dementia. (Click here for a great Teepa SnowYoutube video about the difference between this and true dementia.)

Our anniversary reminds us that in general, couples are happier and healthier than their single counterparts. We also do better if we do come down with an illness, including dementia, due to our built-in support person, advocate and caregiver. Sometimes, such as when Jim and I have a disagreement, I think back to simpler times when I had only myself to please. I’m sure Jim does the same. But really, they weren’t that simple. I also had no one else handy to share my joys and disappointments with. It just isn’t the same when you have to go outside your home to do this, no matter how supportive your relatives and friends are. We both celebrate our anniversary with gratitude.

Our meetings with family and friends remind us how important it is to maintain a social life. Being on the road as much as we are in the summer, that can be difficult. But again, we know that staying in contact with other people is a key component to staying healthy. Even if one of us did have dementia, that would be true. It is so easy to become isolated when you don’t feel good, or when your dementia begins to make you feel uncomfortable with others or when you, as the caregiver, begin to feel overwhelmed, or find that your interests have changed. This can be especially true if you allow this ever so common illness cause you embarrassment or shame. Being proactive and talking about the issues around dementia works a lot better than trying to hide it—for both the person living with dementia and their care partner.

Traveling in our RV also makes us very aware of the age-related issues around driving. We know that the time will come when we will have to stop taking our truck-sized vehicle out on the road—that it will eventually be time to find other ways to travel, or to stay home. So far, we do well, and we haven’t had any scares. Jim likes to drive and does it well. Even so, we know this can’t last forever. We hope that when the time comes, we can let go gracefully without the wake-up call of an accident or near-accident that many have before they can accept that it is time for a change.

But in the meantime, viva la travel!

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, August 24, 2018

Making Conscious Choices

We’ve been teaching about dementia for many years. Over time, I’ve come to notice that “normal” people find it almost as difficult to change their minds as does a person with dementia. The difference, of course, is that we have a choice and those with dementia don’t. But how often do we exercise that choice.

For example, we talk a lot about how a person with dementia CAN’T change their mind, once it’s made up because their ability to think abstractly is limited. We can, but how often do we make that effort? Think about the last time you disagreed with someone. Did you consciously use your abstract thinking ability to evaluate their view and consider how it might be right, or even partly right? Or did you respond almost automatically, with your own pre-determined view? If you chose the latter, you aren’t alone. Most people do. They make a decision and stick with it even when new information makes it less accurate. Humans tend to do things the easiest way. Conscious thinking takes effort and the willingness to accept that we might be wrong. The stronger our beliefs, the harder it is to change them.

I often think of a “fact” I learned in college in Alaska. In my Alaskan history class, I learned how people emigrated from Asia to Alaska over the Bering Sea land bridge during the ice age, and then filtered south. Recent discoveries have made that theory very questionable. Even so, it is still the theory that most resonates with me. Now this doesn’t affect my life. However, it does make me think about other beliefs I might have that are more personal. What about the religious and political beliefs that I have developed over time? How often do I question them to see if they are still relevant? How often do you?

Care partners of people living with dementia are challenged to make these determinations all the time. You learn to put aside your own beliefs about what is true and what isn’t and go with your loved one’s views at least enough to let them feel heard and affirmed. But how often do you do this with others?

This time I think of a cousin that I grew up with. We have very different religious beliefs but we can still talk about them. Neither expects the other to “convert” but we are able to consciously use our abstract thinking ability to share and look for value in each other’s ideas. This isn't something we do casually. It takes time, patience, empathy and acceptance as well as a healthy curiosity but the result is a special closeness that we otherwise wouldn't get to feel.

You may think that this blog isn’t about dementia care. It isn’t. It’s about self-care. It’s about choosing to exercise your ability to think abstractly, to listen and consider before rejecting a new or conflicting idea. Remember the old adage: “Use it or lose it.” The less you make conscious use of this ability to make conscious choices, the more rigid in your thinking you will become, making it almost as difficult for you to deal with change in any form as it is for your loved one.

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, August 10, 2018

Roadside Lessons

Clatter, clatter, clatter. Not what we want to hear as we drive or RV from one campsite to another. We stop get out to find our exhaust pipe on the ground, run over by one of our rear tires.  We were miles from any town. A service station and a huge flea market barn are the only buildings in sight. Jim drives the RV, with the pipe dragging underneath and the tire shredded, to the service station. At least, we aren’t parked right on the road.

My call for roadside aid adds to the stress as I try to navigate through a forest of automated choices and long waits only to find that the real person I finally reach is the wrong one. I’m sure that normally, I’d have had no trouble with their system, but now I feel as though they are intentionally trying to make a difficult situation worse. After going through their complicated process several times, I talk to three different people, telling my whole story and over each time, before I reach one who seems to know her business. She tells me if they can find a tow truck big enough to tow a 20,000 pound RV, we’ll likely have to have it stored since it is Saturday and the repair shops aren’t open. And that cost of the tow will be well over what our insurance pays because we are in nowhere land, repair-shop-wise.

We count up the likely expenses as we wait for her to find a tow-truck. They finally put us in contact with a tow company but it will be a while before they can come out. Stress is going up for both of us. How are we going to handle this? Where will we stay if the RV is stored? How will we stretch our budget to pay for the extra cost of the tow? The questions just keep on coming. We are on our own. There isn’t anyone to call for help, except for the insurance people, of course. And we are independent. We prefer not to ask for help anyway. When I worry, I get irritable. And when Jim gets upset, he quits talking. It’s a good thing. Likely, anything he’d say would have set me off. Not the way to support each other, and we both know it, but stress is ruling.

The wait seemed to be taking forever and so I decide to go visit the flea market. A sign offering RV storage prompts me to ask if they have room to store the RV for the weekend.

“Sure,” they say. That part is easy—a business exchange. The hard part is being willing to let go of doing it all—even when I know we can’t.

I take a deep breath and say, “What I really need is someone to crawl under the RV and see what needs to be done so we can move it here.” Then I explain about the exhaust pipe. Years ago, Jim would have done it but those days are over.

They don’t hesitate. “Glad to help,” they say. “And of course, you can stay in your RV in our yard as long as you need to. Oh, and here’s an electric outlet for you to plug into!” Once again, I am reminded how most people love to help. You just have to ask! Quickly I call the tow company and cancel the tow request. It was just in time. The truck was already on its way!

By Monday, with our new friends’ help and advice, we have figured out how to get the RV repaired without having it towed. None of this would have happened if I hadn’t been willing to let go of my stressed out, we have to do it all feeling and ask for help! We are still dealing with the results of the accident but it hasn’t been nearly as expensive as it could have been. And we met some wonderful people!

OK, we aren’t caregivers, but the moral of this story is that anyone can become so stressed that they don’t think clearly. That is, anyone can start exhibiting stress-related dementia symptoms, including people like us who teach about that very thing! But thankfully, I was able to reach out and ask for help. And you can too. Even when you are feeling overly stressed you can do this. Of course, it helps to know who to ask. It pays to plan ahead and have a list of possible helpers handy. You won’t always be lucky enough to have your incident right next to the very help you need.

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 27, 2018

When They Don't Remember

Today’s blog is about what happens when a Person living with dementia (Person for short) can no longer recognize family. Care partners sometimes think they are no longer needed. Even in a facility where there is a good staff-resident ratio, the family care partner is a vital team member.

The memory care facility where I volunteer has a nice comfortable 5 residents per staff. (This is exceptionally low. The ration is often 8-1. HW) When staffer’s caseload is made up of mobile and continent residents, this works well. But the next day, the staffer’s caseload may be made up of four incontinent residents with one in a wheel-chair. Then, the staffer just can’t give the residents great care. Likewise, flu can make all five residents sick and incontinent. Families of residents need to show up often enough to be available and able to help in such situations and to advocate for changes if they are needed. -- Connie

Family can find it painful to visit a loved one who no longer remembers them, but it remains highly important. A resident who had regular family visits will almost always get better care.

That’s the physical reason families should continue to visit. There’s an equally strong emotional reason too.

My mother-in-law’s memory has failed. She still loves ice cream and so we usually bring her a cone and sit with her while she eats it. But then my husband, Randy, wants to leave. She usually recognizes him but she keeps asking the same questions over and over. He says, “If she can’t remember from one minute to the next, she surly can’t remember that I was here even a few minutes after I’ve left. What good does it do to go?” -- Sue

What Randy isn’t aware of, and what many truly caring, but frustrated, care partners don’t realize is that there is a difference between physical memory and emotional memory. True, Randy’s mom may not remember he’s been there, she will remember the emotions she experienced during his visit.  That’s why it is so important to help her experience as many positive emotions as possible.

Here are some suggestions for Randy:

Use patience. Yes, she will say the same thing over and over, but your ATTITUDE is what counts. Although the words don’t last, the feelings do. So focus on that instead of being impatient with having to say the same thing over and over. Think of your words as vehicles for transporting positive feelings from you to her.

Use touch. Just sit and hold her hand. Give her lots of hugs. Hugs when you arrive, hugs when you leave. If she is comfortable with you doing so, sit close enough to sling your arm around her shoulder. Touch travels to the brain via a different pathway than words do and it lasts longer too. Gentle, non-custodial (voluntary) touching also imparts caring and love.

Use music. Like touch, this is another pathway and it will last longer than words. You may find that it will actually help her to think more clearly and remember a little longer as well. Music can trigger residual emotions…emotions remembered from earlier events. This can be very enjoyable as long as you work to elicit only positive memories! Develop a playlist of her favorite songs. and sing along with her. That will add the positive feeling of togetherness.

Use food, or other favorite things. Randy is good at this. The food he brings leaves her with a memory of the pleasant feelings she had while she ate it. Ice cream is a dementia favorite. Sweet is often the last taste to fail, and the cold smooth texture is also pleasurable. And so is the still present emotional memory of other pleasant times when ice cream was consumed.

Do something with her. The fact that you are doing it with her is more important than what it is. This will bring about feelings of togetherness, self-esteem, and affections that will last long after you are gone and the event is forgotten. Look through a photo album, sing songs together, pray together, eat an ice cream cone too.

The bottom line is to do whatever you can while you visit to a) make sure her physical care is the best it can be and b) provide her with lots of positive emotions to remember later.

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 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.