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

Friday, September 30, 2016

Be a Better Storyteller

Our 3 for 2 book special honoring the 2016 World Parkinson's Congress. Good until Nov, 1, 2016.

Buy Now!

***

Be a Better Storyteller


In Eric Barker’s blog, Neuroscience Of Mindfulness: How To Make Your Mind Happy, he talks about how our brain is divided into two parts: The right brain, which collects facts, and the left brain, which interprets these facts. Thus, your right brain sees a person glance at their watch. Your left brain tells you, “She’s bored” or even more likely, “I’m boring her.”

We all do this. But in most cases, we also check our interpretations against facts.“Oh, yes, she has an important appointment and needs not to be late.” If I have dementia, I’m not going to be able to do this. I accept my left brain’s interpretation without question. I live in the moment and can’t apply such information, even if I remember it, to what’s happening right now.

Eric Barker suggests that we become aware of how our brains work…that we understand how creative, and often incorrect, the left brain can be in its interpretation of the facts that the right brain collects. Well, that’s fine for the average person, but it doesn’t work for me if I have dementia. I can’t do that. I’m stuck with what my left brain tells me. So how can you help me avoid this?

First, if I come to a conclusion, flow with it. I’m not going to change. Explaining the facts, arguing or defending isn’t going to work. Accept, agree and deflect or distract. But maybe there are some things you can do to help me avoid some of these conclusions before they happen.

Eric Barker suggests that you help the left brain build better stories. Now, there’s a thought! What can you do to help me build better, more positive stories?

Make me comfortable. As discussed in the March 12, 2016 blog, Emotions, it is human nature to pay more attention to negative messages. They are more intense and get our attention more easily. We need them to motivate us to move away from danger, or often, just from being uncomfortable. Being uncomfortable and danger are on the same plane, only danger is just more intense. Dementia takes away my ability to judge intensiveness, and so I respond similarly to both. The more comfortable you can help me to be the better I will react to my environment, i.e., the more positively I will interpret what my right brain feeds me.

Improve my self-esteem. As my condition worsens, as my ability to think, remember, or do things for myself diminishes, so does my self-esteem. Thus, I’m more likely to think I’m boring, or that I’m not good enough for you to hang around, or that I’m too much trouble, or…. To counteract this, use lots of physical reassurance on a regular basis: hugs, kisses, anything you can do or say to show me that I’m important to you. This won’t work during an event when I’m convinced of something negative…then I’m stuck. Your actions must happen at times when I can accept them at face value, not as an avoidance of my, to me, accurate statements.

Help me to feel useful. The better I feel about my contributions to our daily life, the happier I will be and the fewer negative emotions my left brain will have to build into its stories. Look around. What can I do? It doesn’t matter if I can do it well. Can I help with the dishes? Fold the laundry? Sweep the floor. I don’t need to hear that it is good for me to be keeping busy. I need to hear that I’m helping you, making your job easier. OK, so maybe I’m not. But that’s what I need to hear. So, if you want me to feel useful, tell me that!

Help me to feel creative. Creativity is very uplifting, and adds all kinds of positive feelings. What did I do before dementia? Was I a photographer? An artist? A musician? A seamstress? A carpenter? A cook? I don’t me professionally, but how did I express my creativity? What was important to me? Family? Work? Hobbies like dancing, or golf or knitting? How can you help me to continue to do some form of this same thing? Even looking at photo albums can be helpful if that is all I can still do. Ask questions about the photos, but don’t push for names, etc. or anything that makes me agitated. Music can be very helpful. So can art work like finger painting. Use your own creativity to come up with ideas and try them out.

None of these suggestions are likely to keep my left brain from telling negative stories altogether. But they may help enough that I may need less medication…and that’s a real plus!

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with 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.

Saturday, September 24, 2016

Mindful Listening

Our 3 for 2 book special honoring the 2016 World Parkinson's Congress. Good until Nov, 1, 2016.

Buy Now!

***

Mindful Listening

We all know that LBD* slows a person’s thinking. We learn quickly to take our time and wait for an answer. Do you get impatient when your loved one takes so long to process thoughts? Do you ever have trouble accepting that your loved one needs so much time? Do you find yourself wanting to roll your eyes or sigh—and sometimes these might even escape? Or do you just look around or close your eyes and wait, PATIENTLY? Everyone does something like this at least once in a while, so it’s OK to say “yes.” It’s boring to just wait and wait and wait.

Try Mindful Listening. That means that instead of just waiting, which is pretty boring, you put your whole mind into respectful listening, while providing encouragement and support. When you do this you will be so busy doing your part of the job that you may forget to be bored! Here are some things that can get you started:

Put yourself in a good listening position:
  • Be close enough so you can hear easily. A PlwD* and especially a PlwLBD*, will often have a very low voice. You can ask them to speak up if necessary, but make it as easy for them as possible.
  • Try to be face to face. You may have to squat or sit to do this. No one feels comfortable talking to someone who is looming over them. And it will help the PlwD* to be able to see your face so they can read your lips, and even more, your facial expressions.
  • Situate yourself a little to the person’s dominant side. We all feel safer that way and for the PlwLBD, this is even stronger because they feel more vulnerable to start with.
  • Offer to hold their hand. Start with a handshake if you aren’t the primary care partner. Touch is an important part of communication. You may find that you want to hold the hand with both of yours, and that is fine.
Use good body language. Non-verbal cues are often more important than what you say.
  • Smile and be friendly, and be sure you mean it. Don’t fake it.
  • Keep your eyes on the person’s face. Don’t go looking around, or down, or close your eyes. The eyes are communicators too. Use yours to show you are interested and really want to hear what the PlwD wants to say.
When a person is having difficulty finding the right word:
  • Avoid trying to help. Think of a time when someone did that for you and it was the wrong word.You had to stop searching long enough to reject the one they suggested. For the PlwLBD, it is even more annoying. It stops their thought process and gets them off on a different track. They will probably have to start over—if they can get back to where they were.
  • Encourage the person to continue processing without interruption. Squeeze their hand, smile, nod, keep looking at them expectantly and wait. Put your whole effort into doing this supportively.
  • Listen for feelings more than words. Sometimes the words just won’t be correct. Don’t try to correct the words but respond to the feelings. You will usually be right.
With this kind of attention and encouragement, you will find that the person is able to talk much more clearly, with fewer problems. AND you will be surprised that how more interesting it will be for you than when you were just waiting. Listening is an art. Practice it. You may find yourself practicing it with others with good success too! It isn’t only the PlwD who wants to be listened to with respect and interest!

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
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. As informed caregivers, they share the information here foreducational purposes only. It should never be used instead of a physician's advice.


Wednesday, September 21, 2016

Honoring the 2016 World Parkinson's Congress

The 4th World Parkinson's Congress (WPC) is in Portland Oregon, from September 20-23, 2016 and we are there! If you see us, do stop and say “Hi.” We are also excited that all three of our books will be on display in their Book Nook.

Parkinson’s disease (PD) and Lewy Body Dementia (LBD) are very closely related. Well over half of those with PD go on to develop LBD, and the percentage increases the longer a person lives with PD. For a long time, PD was considered a “movement disorder” but now there’s a lot of interest in its “non-movement symptoms,” symptoms that are also symptoms of LBD, like hallucinations, active dreams, low blood pressure on rising, drug sensitivity and of course, cognitive problems.

In honor of the WPC, we are offering you this great 3 for 2 special:

Purchase both of our published, award-winning, books and get a FREE manual for staff. 

Just click "Buy Now" below! 

Offer good til November 1, 2016 or until our limited supply of books runs out!



Award Winners:
“A Caregivers Guide to Lewy Body Dementia”
and
“Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia”
are paired with our staff manual,
Riding a Roller Coaster with Lewy Body Dementia”
in this special TRIO Pack WPC offer.

Bought separately these books cost $62.50
The Trio Pack regulrly sells for $49.95
This month only, get it for $42.90



For more about 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, September 16, 2016

Planning a Respite Trip

Last week’s blog was about respite care in general. This week’s blog is about travel, and especially about using respite while the caregiver travels. Just for fun, I’ve presented it as from someone with dementia, but with the insights we’ve learned over the years…insights that a person with dementia probably wouldn’t be able to tell you.

One of travel’s main attractions is experiencing something different—which, as someone with dementia, is what I fear most. How can I maintain control of my fading life if I don’t have my familiar moorings? At home, my favorite chair, the familiar floor plan, and normal routines give me structure and feelings of control. Travel takes these away.

I used to love to travel. Early on, we traveled and I could still enjoy it. The 6/27/14 blog, Summer Travel, offers some good guidelines that made travel easier for me…and my care partner.

But now, change has become very difficult for me. This makes travel downright scary. And when I get scared, I get irritable, paranoid, and irrationally angry. My symptoms increase, with more hallucinations, more active dreams, and less mobility. With little or no impulse control, I can’t control any of this. I probably can’t even tell you that I’m frightened. I can only express my feelings with actions. The more distressed I am by change, the less I’ll be able to enjoy travel. And if I don’t enjoy it, I guarantee that you won’t either!

But caregivers have rights and needs too. If you want to attend a family event, do you give it up and stay home to protect me? Do you take me along and spend the whole time dealing with my problems? Is there any place in between, where we can both get our needs met? Well, sort of.

Let me warn you, I want my same caregiver (you) always. And with little ability to empathize, I can’t understand that you need time away. No matter how you do it, I’m not going to be happy, so accept this and move on. However, with a caring home caregiver or respite center, I won’t be as devastated as I tell you I’ll be. The goal, as always, is to find a happy medium between my comfort and your needs.

Plan ahead. Having you take time away is going to be much easier for me to deal with if we have developed routines that include respite (see last week’s blog). However most caregivers don’t see a need to do this until the need for respite, for whatever reason, is urgent. Even so, do try to plan far enough ahead for some gradual visits while you are still around to cut down my feeling that I’m being left with strangers. We’ll both be a lot happier that way.

Consider pharmaceutical help. I will probably tolerate this change in my routine better if I have the help of a short-term, low-dose regimen of an antipsychotic like Seroquel, (if I can tolerate it) starting about a week before you leave and ending no more than a week after you return. While the Whitworths are not advocates of drugs when there are other options, they know that there is a time and place for them. This is one. No matter how you try, this will be a time of high stress for me and I need that extra help.

Keep it a secret. Many care partners, spouses, especially, hate to keep secrets. “We never have,” they say. But the rules have changed. My comfort is much more important to me now than your need to be up front. As soon as you tell me about firm plans to leave me, I’ll start stressing and I’ll continue to stress until you leave…if you do. I may get so bad you won’t feel you can. Wait until several days into the Seroquel regimen and then tell me—or even wait until right before you leave. I will be able to handle it better then and won’t have so long to stress.

Set the scene. This is as close as you should come to telling me “the truth,” until right before you leave. About a month before you go, you can mention your plans. Don’t give me any actual dates and keep it all low key… “just something I’m thinking about for the future.” I probably won’t remember, but it will be in my subconscious and that will keep it from being such a surprise. If you get specific, I’m going to stress for that whole month!

Don’t abandon me. Set up a way for me to have contact with you. This will decrease my feelings of being abandoned. Maybe you can call every day at the same time. Or you can leave a cell phone with me. If you do, however, expect continual calls. I need a lot of reassurance!

Add familiarity. If I’m going to a respite center, take as much of “home” with me as you can. Photos of family, a familiar pillow or bedspread, etc. The more of my home environment I have the happier I’ll be.

Expect me to adjust once you are gone. Like a two-year-old, once it is a done deal, I will probably stop fighting and will begin to adjust. I still won’t like it, but I won’t be so stressed.

Arrange for dealing with minor emergencies. Ask someone we both know and trust to be available for minor emergencies and make sure that person knows how to contact you for things that they can’t handle.

Finally, LET GO. Once you’ve done everything you can do, let go of your caregiving job and enjoy your vacation!

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
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 physician's advice.

Friday, September 9, 2016

Making Respite Happen

All caregivers know they need to take care of themselves. They know that includes respite. But when things are going well, they say, "I don’t need it." And then, when they aren’t, it's, "I don’t have the time or energy to add respite into an already too full schedule."

We recommend that you give serious consideration to starting a short respite routine well before it is needed, not because YOU need it but because your loved one does. They need to have this routine developed:
  • While they are still able to adjust. As the disorder progresses, your loved one will find it much harder to adapt and will resist any change as too scary in their changing world.
  • While they can still socialize with others. As communication skills decrease socializing becomes more difficult and isn’t worth the effort, especially with stranger.
  • Before they become too dependent on you. As their world becomes more confusing, they perceive you as their stability and they will become very dependent and will have difficulty accepting even a temporary caregiver, especially one they don't know.
Bob started taking Maude to adult day care once a week for two hours while she was still able to enjoy the outing. It became a part of her schedule and she looked forward to it with pleasure. Bob even noticed that the added socialization made her more aware. As Maude’s condition degenerated, Bob added an extra day per week and arranged for them to give her a shower. “It is well worth the extra $20,” he told his support group. “And I really needed that extra time. Most of my free time has been taken up just running errands and such for Maude. I haven’t been able to just sit and read a book for months!” He added, “Maude knows the staff there and gets along well enough with them that I’m planning an overnight visit to our son next month.”

Maude has a routine she not only accepts but looks forward to with people she feels comfortable with. That makes extending the visits, even to overnight, much less difficult for Bob to do than if he were starting from scratch.

The other reason for starting respite well before it is actually needed is that it will be much easier for you to do when you aren’t already stressed. Then, with it is already in place, expanding it for your increased needs won’t be nearly as stressful—for either of you—as arranging for a first time respite event when there is a real need for it. Then you both will likely be so stressed that no one will deal well with this change in routine. You probably won’t feel you really need respite until your loved one’s condition worsens. Just making the step to leave your loved one with someone else is never easy. When you already have a routine of short respite periods in play, that step, at least, will be out of the way.

Trying to figure out how you are going to do respite will also be less stressful if you do it before it is really needed. Remember, this needs to be a respite period that you can count on. One where you make an appointment to get your hair done, or go to lunch with a friend, and know you can keep it.

One of the simplest is to find a facility that offers Adult Day Care. One facility calls their program a “Day Club” which takes stigma away from the name. In other cases, loved ones have talked about going to “work.” Staff often encourages this by giving them jobs that help them to feel needed. Many facilities offer transportation along with the day care.

Another option is to ask friends or family to come sit with your loved one. If you do this, work to make it a regular event, not just a happy visit. The disadvantage of this is friends or family may not be able to extend their care as your needs change and your search for respite services will then have to staranew.

A third option is to arrange for a paid caregiver to come regularly. Find out ahead of time if they can do overnight stays if and when you need it. Individual caregivers often charge less than those hired though an agency. However, agencies add the security of having vetted their employees. This can definitely help to relieve worry.

Then, of course, you also have to figure out what to do with your respite time. The main goal of respite is to refresh the caregiver. You may have needed errands, but do make an effort to keep time free for something that takes you away from caregiving for a while…a lunch out with friends, going for a manicure, sitting and reading that book you’ve been wanting to read, or even taking a nap.

Once you have a routine developed, step it up and do as Bob is planning to do and do an overnight. The first time, this can be leaving your loved one in a respite center and staying home, or going somewhere close by while your loved one stays home with an overnight caregiver. This “dry run”, allows you to feel more secure about leaving…you can return if you are really needed... while it builds on the routine. Adding this less stressful overnight will make taking a trip to your grandchild’s graduation much easier to do later on.

Next week’s blog will be on how to make taking a trip less stressful.

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

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

Monday, August 29, 2016

Living Life

For us, summer is the time when we are refugees from our Arizona home, driven away by hotter temperatures than we want to endure. We live 24/7 in our RV, finding space to do most of the things we do at home, but not nearly as comfortably. All of our books have been written at least partially, while we lived in our RV. However, we don’t spend much of our time or efforts thinking about what we don’t have, for summer is also full of treats for us and those are what we try to focus on.

Summer is when we see more of our kids, grandkids and great-grandkids. What with a reunion and smaller family get-togethers, meeting up with old friends, spending time on the family farm and getting to meet my newest great grand baby, 3 month old Shilo (a real beauty already!) we've been more focused on family and friends this summer.

We took a weekend to visit my brother's family...and to drop in on my nephew Tom's dementia support group. His wife has LBD, and they've been dealing with it for several years. He's a very quiet man, but he's learned to use his group. He shared his experiences and ideas and nodded in camaraderie with others as they shared theirs. "This group has been such a great help to me," he told us, and the group. "It keeps me from feeling so alone." We hear that a lot, but it was especially wonderful hearing it from family, and from this usually so reticent man. One of the topics under discussion was respite time. We were impressed at how they all seemed to understand how important that is and how each of them had developed ways to have some.

Visiting support groups is usually a very important part of our lives...for a different reason than Tom's. We are not living with LBD; but we are listeners. It is true that we always try to share information when we visit a group, but we also listen. We listen, and hear about issues and joys, concerns and successes, questions and answers about what has worked and what hasn't. It is where we get most of our ideas and information for our blogs and books, and to pass on to other groups. But we are really in vacation mode this year and Tom's is the only group we've visited.

Summer is mostly camping time for us. It’s when we live in RV parks and visit with other campers. Most of them have connections with people with PD or dementia, but we don’t talk about it a lot. After all, for most of these people, this is also vacation time. Unlike us, they aren’t living in their RV 24/7. They are more into having fun than into learning about illness. And so it becomes vacation time for us too. We visit, play cards and pick blackberries. I made blackberry jam, blackberry shortcake, blackberries and cereal, blackberries and… Ugh, I’m sick of blackberries.

Anyone who's read our On the Road with the Whitworths book knows how frugal we both are. The local casino's Senior Monday Buffet ($3.95 each!) is just up our alley. Then we get to play the slots with the $10 they give us, hoping that we’ll get hooked and play a lot more. Last time, I came home with $23. Jim left his 3 cents on the machine. In the same frugal spirit, we toured a park-wide garage sale and came home with a couple of finds. There were other things I liked but living in an RV makes us pretty choosy…no room for things we can’t use right now. And we did some sightseeing although we’ve already toured this area and so it was more something to do than exploration. Again, living in a small space makes getting out (even in the smaller space of the car!) pretty attractive.

 And so this blog is not really about LBD. But it is about living life and making the most of it. You have to do that no matter what else is going on. Like Tom's group members,find some time to live your own life and find the positives even with LBD causing its usual havoc.

For a fun read about the first year we RVed and taught about LBD,:
On the Road with the Whitworths.

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

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

Friday, August 19, 2016

Dealing with Agitation

My husband, Jerry, had to have surgery…and the surgeon said he’d need more than a mild anesthesia. I was naturally worried, but the surgery wasn’t optional; Jerry was in pain. Naturally, I was overjoyed when he awoke after the surgery acting happy and “normal.” But then he started to be very agitated and angry…and he couldn’t urinate. I called the doctor who had me bring him in. They inserted a catheter and now Jerry is really mad at me. He doesn’t remember the surgery, or not being able to urinate. He thinks I’m doing this to him and keeps trying to pull the catheter out. What do I do? Was it the stronger anesthesia after all? Will this be permanent? 
Marie, LBD support group member

Was it the anesthesia? There are no sure answers here, but it sounds like he weathered that well. But then he started having physical problems. With only a limited amount of reserves, some of Jerry’s internal army of protectors were pulled off the task of controlling the Lewy bodies and put to work dealing with emergency issues. Even after the doctor fixed that with a catheter, he continued to be agitated because of this foreign, likely uncomfortable and  definitely unwanted thing in his body.

Will this be what Jerry and Marie can expect from now on? Again, that’s hard to tell, but hopefully, when his body begins to function better, his mind will too, especially once the catheter is removed. The goal is always to make a person living with dementia (PlwD) as comfortable as possible. The more comfort, the less agitation and fewer dementia-related symptoms in general.

What can Marie do?
  • Avoid arguing, explaining, defending or denying. That’s the cardinal rule when dealing with people who can’t reason. What Jerry believes is what he believes and Marie can’t change that. Instead, she can accept, speak to the feelings and apologize. When Jerry accuses Marie, she might say, “Oh, honey, I am so sorry. That must be very uncomfortable.”
  • Use touch. Marie can give Jerry a hug or a kiss--or both, hold his hand, or give him a massage. All of these have a very calming effect. Touch causes the brain to release feel-good hormones like serotonin, and both Jerry and Marie will feel better.
  • Use temporary help from drugs. Marie can contact Jerry’s doctor and ask about a temporary regimen of a mild antipsychotic such as pimavanersin (Nuplazid), clozapine (Clozaril) or quetiapine (Seroquel). The first of these is fairly new but has had excellent reviews. The second is a mild antipsychotic often tolerated by PlwD, but is at risk for causing liver damage in a small number of people, thus requiring regular blood tests. While the third has been the drug of choice for dealing with agitated dementia patients for many neurologists for years, a few people with LBD don't tolerate it well and so it must be monitored carefully. We don’t advocate for drugs as a general rule, but there are times when they are appropriate, such as helping a PlwD over episodes like this.
  • Make someone else the “bad guy.” Marie can ask Jerry’s doctor to become the “bad guy” and tell Jerry he has to keep the catheter in. Jerry may listen to the doctor when he won’t to Marie. He’d probably respond better to a male than a female, and he’d probably respond better to someone he knows, like his primary care physician than his surgeon, whom he may not recognize. A male family member, a grown son, for instance, can sometimes be helpful here. Or even a daughter who has been able to reach her father when no one else can. Call in the reserves!
  • Take care of the caregiver. Asking for help is as much a part of good caregiving as knowing how to calm a loved one. If Jerry won’t quit trying to pull out the catheter or becomes so belligerent that he becomes dangerous, Marie needs to call 911. We want a primary care physician who knows what he/she doesn't know, and knows when to refer. It is the same with caregiving. As a good caregiver, Marie needs to be able to recognize when she is no longer able to keep Jerry, or herself, safe and call for help. Admitting that you need help can sometimes be very painful, but it can't be emphasized enough how important it is. Make it sooner rather than later!
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

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