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

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.

Friday, August 12, 2016

Eleven Years Today!

Today is our 11th Anniversary. Although neither of us, nor any of our loved ones presently have LBD, it has always played a big part in our relationship, right from the first. Jim is a quiet man, unless he’s talking about a subject he’s passionate about. I got him talking by asking him about his license plate: LBDA.ORG. He told me about how his wife had died with LBD. He told me about the problems trials he’d had getting the right care for her. And he proudly told me about how he and four other caregivers had started the Lewy Body Dementia Association. After we married, I told him that although I’d support him in his mission, it wasn’t MY mission. But then, I made the mistake of commenting about how the LBDA was not doing well with volunteers—and became their volunteer coordinator. Jim’s mission became mine, and has been ever since.

In our eleven years of marriage, we’ve traveled a lot. From the first, we lived in Arizona and traveled every year to Washington state. At first, Jim also traveled to Georgia for LBDA board meetings. When, in 2009, he completed his six year term on the board, we were already going in a different, but compatible direction, teaching about LBD as we traveled, and at home. Over the years, we’ve attended many conferences and participated in several. We’ve also attended uncountable caregiver and Parkinson’s support groups. This year, we plan to attend the World Parkinson’s Congress in Portland Oregon. We find these events extremely important because that’s what keeps us in contact with people who are living with LBD and Parkinson’s. Your experiences are what drive our work. We take what we hear you talking about, do some research and present the results with our own slant.

Along the way, we’ve co-authored three books. The first one, Riding a Roller Coaster with Lewy Body Dementia was initially directed towards staff. When we tried to get it published commercially, editors were interested but told us, “Staff don’t buy these books. Family caregivers do.” The editors were right, and our next book was directed towards family caregivers. We are honored to say that A Caregiver’s Guide to Lewy Body Dementia is now a staple in every LBD caregiver’s library. But we had more to say and so last year, we published Managing Cognitive Issues in Parkinson’s and Lewy Body Dementia. It focuses on those symptoms where Parkinson’s transitions into Lewy body dementia and on ways to deal with these with fewer drugs. We also re-published the Roller Coaster book because many family caregivers want something to give to the people who care for their loved ones. You can now buy the set of three, the “Trio” on our website at a discounted price.

I was a writer before Jim and I ever met. My first book, Betsy, is an historical romance novel based in Missouri in 1850. The heroine is my grandfather’s step-mother, who was only four years older than him. If I ever stop writing about LBD long enough, I have a sequel half-written that will actually be about my grandparents.

Then, in 2013, I wrote On the Road with the Whitworths, a memoir of our first year of traveling in an RV and the start of our teaching about LBD. Unlike the books about LBD, this book is fun to read. Especially if you are dealing with this baffling disorder, reading about it can be difficult. We recommend that you only read a few pages of our LBD books at a time and digest that before you go on. Even take a break and read something lighter. Reading this book provides a good break. It keeps everything light and is designed to make you laugh.

Since 2011, I’ve been writing this weekly blog. It has actually provided a lot of the content for our second LBD book. We now have another LBD book in the works and hope to have it published by this time next year.

For information about Lewy body disorders, read our books:

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 5, 2016

Transitioning Jobs

You’ve made the decision to place your loved one in residential care. You know it’s time. You did the research and you know you’ve chosen the best place you can afford. You made the move, painful as it was, and now, your loved one and you have different homes. For many of you this will be the first time in decades that this is so. Others, such as adult children, may have committed to caring for a loved one to the end. For most caregivers, no matter what the relationship, the transition from full care to sharing the load with residential staff can be traumatic.

You may feel loss, as though you had lost a job…a job you may not have wanted in the first place, but still, one that has taken most of your attention, energy and time for a long time. And as you go from being overburdened with too many tasks to surprisingly long periods of free time, you may feel lost and not know what to do with it all. You may go from feeling needed to feeling left out of the loop. You may feel guilty, as though you reneged on a job you committed to do. All of this is very normal.

You may know, intellectually that your job isn’t done. Last week’s blog was all how your loved one still needs you to provide emotional and social care, coordination of services, and general overseeing. However, it may take a while to “get” this emotionally. As with any loss, you may go through phases of feeling guilt, anger and depression before you get to a place of acceptance where you can pick up and move on, in this new situation. Give yourself permission to feel these. Trying to stifle them simply makes them last longer.

Guilt can often make a caregiver super critical of the way the staff cares for their loved one. The underlying feeling (often, unrecognized, of course) is that if I can’t do anything personally, I can at least try to control how others are doing it. This is seldom helpful. While it is true that no one is going to do the physical care like you did, most care staff do a pretty good job. Naturally, if there really is a problem, you should to address it. But pick your battles! Don’t criticize unless there’s a real need. They may not do it just your way, but if it works, accept it. Instead, look for things to like, and compliment, compliment, compliment. It really will improve your loved one’s care!

Then there’s the depression…As you caregiving job changes, your whole feeling about yourself may change. You have been so invested in caregiving for so long that that’s how you defined yourself. Now, you ask, “Who am I?” Yes, you are still a caregiver, but even that has changed so much you really don’t know who you are anymore. Now is the time to think back to what made you happy “bc”…before caregiver. One spouse had always been good at “fixing things.” His daughter got him involved with Habitat for Humanity. Now the family has to make an appointment to see him, he is so involved!

Donna commented, “I just put my husband in memory care and now, I’m lost. I don’t know what to do, or even what I should be doing. I don’t know what I can do for him. I don’t know what to do with all the time I seem to have now.” We talked about how her husband still needs her, about the supportive care she still needed to provide. But then, I added, “Now is the time to start some of that self-care you haven’t had time or energy for in the past.” It turned out Donna liked to travel but of course, hadn’t been able to do for years. She has children in the area who are willing to stand in for her in the memory care center so that she can be gone for several weeks. She’s getting excited about planning her trip, “I know I’ll miss my husband, but the kids are there for him and they will keep me in the loop.”

You may not want to do something as involved as Habitat for Humanity or as drastic as a long trip, but this is still the time to do something just for you. Do you have hobby you miss? Friends you haven’t connected with for a long time, or only minimally? A book you’d like to read, if only you could find an uninterrupted hour? Or even a full night’s sleep? None of this is selfish…it will improve your physical and emotional health and make you a better caregiver. Go for it!

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

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

Friday, July 29, 2016

Your Job is Done...NOT!

What happens when your loved one enters a residential care facility? Your job is done, right? NOT. Your job has changed, but it is far from done. When you are the full time caregiver at home, you are responsible for it all, the physical care, the emotional support, and the coordination of all the services your loved one needs.

When your loved one enters a care facility, your job is still very important. Yes, you have given up the physical care, but that is something any well trained person can provide. Only you can provide the emotional care your loved one needs. You are still the most important person in their life. You are their link with all that is safe and familiar to them. You provide loving, non-work-related words and touching, which the care staff has neither the time nor the ability to provide. One woman said it this way: “I get to be a wife again! Before, I was so bogged down with physical care, I felt like a nurse, not a wife.” And don’t discount just sitting and visiting. Socialization, which is as important as exercise, is something else that care staff have little time for.

Likely you’ve already been coordinating doctor’s visits, physical therapy, haircuts, and other services. This doesn’t quit. In fact, it may be even more difficult to do with you in one place and your loved one in another. You’ve probably been your loved one’s advocate for a long time too, especially if verbal skills are slipping. This too may increase. You are a great source of information for the care staff. You are the one who knows that your loved one hates green beans but loves baked beans, that they have ticklish feet, that too much sun always makes them break out in a rash, or that a certain medication makes them very agitated, etc. You’ve probably been social director for a long time too, encouraging family and friends to visit, but watching to make sure that they didn’t come too many at a time or stay too long, something else where only the place changes.

Finally, it has been shown over and over that a residential patient who has a regular visitor gets better care. The staff spends more time with a patient whose family caregiver is regularly present. It isn’t about trying to please you, or show off, or even that you are keeping a critical eye on them. It is simply human nature! In addition, even though you are no longer doing the physical stuff, there is still a lot you can do…get a glass of water, plump up a pillow, walk in the hall with your loved one, etc. things that the staff would have to do if you weren’t there…some of which likely just wouldn’t get done.

And so, no, your job isn’t over; it’s simply changed. However, even if you realize this, it may not be an easy transition. Next week the blog will be about the emotional trauma that caregivers feel as their job changes from physical to emotional care giving.

For information about Lewy body disorders, read our books:

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

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

Friday, July 22, 2016

Being Prepared

The last two blogs have been about why you should consider hospice before your loved one’s very last days and how to choose one. This blog is about preparation in general. LBD is a very erratic disorder and every person living with LBD (PlwLBD)  expresses it differently. However there are some things that you can expect:
  • There will be medications, some for the LBD and some to deal with those physical problems.
  • Once present, Lewy body disorders WILL progress. There will likely be some times of apparent improvement, and it may take many years, but over time, the PlwLBD will become weaker and less competent.
  • The time will come when a single caregiver will not be able to cope safely. The PlwLBD will become too helpless or the caregiver’s health will fail. More than half the time the latter is the case.
  • LBD is a terminal disease. No one recovers from it, and the last year or so is usually physically and emotionally difficult for both the PlwLBD and their caregiver.
  • Because of the many physical problems that accompany LBD, there is a very good chance that a PlwLBD will go to the emergency room, probably several times, and possible be hospitalized as well.
None of these are pleasant. They aren’t what any caregiver wants to happen. However, you can make them much easier to deal with if you plan ahead for them. Many people resist. They view such planning as giving up, or even as “making it happen.” It is neither. It is true caring, and smoothing out the path ahead.

Start with your pharmacist. It is easy to assume that all pharmacists are the same, but like doctors, they aren’t. Ask around and find one who is familiar with LBD and how it reacts with various drugs. Once you find one that you can trust, use this person for all of the PlwLBD’s medications. This may mean that you will have to drive out of your way, but it is worth it. Always ask this person about any over-the-counter drugs the PlwLBD takes as well.

In the same way, search home care staff and residential facilities well before you need them. Be aware that if you choose to go the home care route altogether, you need to plan on 24 hour staffing. Although you can often get by with just a few hours a week to start, this will change. Eventually, a family caregiver should not be providing more than a third of the care, preferably less. There are too many other things that the family caregiver has to do, besides the physical care.

One caregiver reported that when they did a pre-search of residential facilities for their loved one, the residential staff was surprised. They are used to people needing their services right away. Don’t let such an attitude stop you from searching out the best care you can find for the price you can afford. (Residential care is usually less expensive than full time home care, BTW, but it is still expensive.) However, if you do your searching before the need arises, you can be much more objective. You are also less likely to choose something less than you want just because it is available. There are several good sources of information to use when searching out residential placement, including both of our books.

Don’t neglect financial and legal issues. Find an elder care attorney and get all the legal papers drawn up while the PlwLBD can still make their wishes known. Again there are many resources available to guide you in this, including our books.

In most communities, there are several, or even many, hospice services. Again, search out the right one out well before you need it. Make sure it is one that understands the drug and behavioral issues involved as well as the usual dementia-related problems. And remember, the PlwLBD does not have to be within a week or a few days of dying. Take advantage of this service as early as you can.

Face these decisions as tasks that need to be done for the future. Once they are done, and plans are made, you can forget about them until they are needed. Then at “crunch time” when you are already stressed, it will be easier to make informed, caring choices.

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

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

Friday, July 15, 2016

Educating Staff

Last week, Susan commented that her mother had been on hospice for a long time but that the experience had not been a good one because the nurses involved had no knowledge about Lewy body dementia. It is sad but true, that some hospice organizations are still working under the misconception that "all dementias are the same". As LBD caregivers, we know that isn’t true.

Naturally, a caregiver’s first choice of hospices is one that already understands the special needs and behaviors of the person living with LBD (PlwLBD). If you can’t find one that does, then the next choice is a group that is open to being educated about the disorder. This holds true, not only for hospice staff, but for a variety of other medical personnel as well. ER staff are a prime example. Since PlwLBD are notoriously likely to end up in an ER eventually, probably more than once, it pays to check out the hospitals in your area ahead of time to find out which ER staff is most LBD knowledgeable, or at least, open to learning. You may have to drive further to get to the more receptive ER, but the better care will be worth it.

When the hospice, ER, or any other staff is not knowledgeable but open to learning, it often becomes the caregiver’s job to provide the training. Most caregivers have had the experience of becoming teachers in such cases, like it or not. And most are willing to do so when it means better care of their loved one.
  • Consider developing an information packet to share with less informed medical personnel.
  • Start with the LBDA wallet card, which you can get from the LBDA website.
  • The LBDA website has a wealth of information available besides the wallet card. Copy some of it off and add it to your packet. Choose articles that are short and to the point—there’s more chance they’ll be read!
  • Our 5/29/15 blog, Educating the Hospital Staff, includes a list of items for your packet, including information that is specific to your loved one.
  • Check out the Care Partner Booklets on They have some great suggestions for information to share.
  • Timothy Hudson’s webpage, is another very helpful resource with a multitude of articles.
  • Teepa Snow teaches about using her 'Positive Approach" method with LBD patients. You can find many of her free Youtube videos here or go to her website where you can buy longer DVDs. She is a great teacher and fun to watch. Her videos are as appropriate for professionals as they are for family caregivers.
  • Both of our books discuss the importance of choosing teachable professionals and what information to share.
  • Finally, do make use of the LBDA Helpline, 1-800-LEWY-SOS, (1-800-539-9767). Anyone, including professionals, can call and talk to experienced caregivers about anything to do with LBD.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia

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