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

Friday, October 19, 2018

LBDA and Whitworth History, Pt 3

This is the third in a series about the early history of the LBDA and our involvement in it and in the spreading of the word about LBD in general.

The first few years, the organization was loosely based in Arizona, with a mailbox in Tempe, a university town the group thought would give them veracity. However, it was really national, with members spread out from coast to coast. They met monthly via group phone calls and face-to-face meetings held every six months in a variety of places from Florida to Arizona and from New York to Georgia. Eventually, it found a permanent home in Georgia, which the group decided was closer to research centers than the Arizona location.

There were a few mistakes. One was when, in an effort to save money, the group bought thousands of fliers. The idea was sound, except that the group was growing and and information about LBD was also growing. Within a year or so, the fliers were replaced with a new, more up-to-date version, leaving hundreds (thousands?) still sitting in boxes in Jim's spare room in Arizona. They were still there when we married. I had family coming to visit but there was no room for a bed. We solved that by buying a twin mattress and laying it on the boxes. That's where the fliers lived until we finally recycled them a few years later.

When Jim's six years on the LBDA board were up, I gave up from my job as Volunteer Coordinator too. We still supported the organization and believed passionately in its cause, but it was time for others to take over. My post-retirement dream had been to travel in an RV and teach--something, I didn't really care what. I now believed that this might be possible.

Jim wasn't keen on RVing. He had enjoyed it with Annie but considered it a "been there, done that" thing. However when we included teaching about LBD into the mix, he stepped right up. We bought an RV and we've been traveling up and down the west coast spreading the word about LBD ever since. (Update: After about 12 years of RVing, we are selling our motor home. Age is catching up with us and it just isn't as fun anymore.)

By 2009, we'd started writing books. There still was very little out there about LBD and of that, even less for caregivers. I'm the writer, and he's the detail person, "Mr. Eagle Eyes," they called him at the LBDA. We are on our fourth LBD-related book now. Our most popular one, A Caregiver's Guide to Lewy Body Dementia, was published in 2010 and it is still considered the main go-to book for LBD caregivers. We are so honored to have been able to do so much good!

We have great hopes for our latest book, Responsive Dementia Care, which is directed towards dealing with the dementia-related behaviors that often show up so early with LBD--and doing so with fewer drugs. Watch for it. It will be on our websites and on Amazon soon!

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, October 12, 2018

LBDA History, From a Founder's View, Pt 2

Last week, the blog was about the beginning of the LBDA and Jim's involvement in it. This week is about how I got involved.

In 2004, Jim moved to Arizona to be closer to the LBDA "headquarters," presently only a post office box in Tempe, but they had hopes for more eventually. The organization was finally getting its nonprofit status and donations were coming in. The hope was that soon they could have a real office and some staff to fill it. In the meantime, the board members continued to work out of their homes and meet mostly via phone.

The organization had grown and now offered several support groups and a telephone support line. As one of the first telephone responders, Jim spent hours sitting at his desk listening to LBD caregivers and giving them support. A great listener, he was in his element. He found that just listening was what most of his callers needed. That and a little info, of course. Accurate information about LBD was still not easy to find.

In early 2005, Jim had been single for almost two years. Long retired and in a new community away from family and old friends, he was feeling lonely. He and Annie had enjoyed square dancing and so he signed up for a refresher class. My late husband and I had been square dancers too and that same winter, I also signed up for refresher classes--in Washington. However, I was a snowbird...I spent my winters in Arizona. I found a class there at about the same level--the same one Jim was in! The instructor put us together and we've been together ever since.

Jim was pretty shy but I found that I could get him to talk if I asked questions about LBD. Spreading the word about LBD was still his passion. Although I was a nurse, and even cared for my sister who had Parkinson's, I'd never heard of Lewy bodies or Lewy body dementia. By the time I'd known Jim for a few months, I knew a lot! But even after we were married, I saw it as his mission, not mine. I went along as his support, if I went at all.

I did accompany Jim to Washington D.C. when the LBDA board met there. I knew it might be my one chance to visit nation's capitol. By then, Angela Taylor, who is still active with the LBDA, had taken over as President. I made the mistake of observing to her that the group's handling of volunteers was poor. Like the good President that she was, she replied by suggesting that I take on the Volunteer Coordinator job. I did, and with that, Jim's mission became mine! In fact, I had the honor of being chosen as the LBDA's 2007 Volunteer of the Year.

By the time Jim's six year term on the board was over, the small group of seven working out of their homes had grown into an organization based in Georgia, with several paid staff and around a hundred support groups throughout the nation and Canada. Our mission remained the same: to spread the word about Lewy body dementia, although research became important too. We all would like to find a way to end this baffling disorder!

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, October 5, 2018

LBDA History from a Founder's Perspective

October is LBD Awareness month. This year is also the LBDA's 15th anniversary. That's why we are taking this time to share a little history about the LBDA, how it was started and how both Jim and I became involved. For Jim, it started much earlier than 15 years ago--more like 20 or even more.

Jim and Annie had a full life. True, Annie had had chronic constipation for years and years. And true, she'd had Active Dreams, where she even tried to beat up Jim in her sleep. They laughed about it. Nothing to worry about, you know. And none of that stopped them from enjoying life. They square danced, traveled, enjoyed their grown children and their grandchildren. But then, Annie could no longer remember the dance steps. She got nervous when they traveled. And she started accusing her daughter of things that just weren't true.

Annie was developing Lewy body dementia, but this was the late 1990's and no one knew much about it. Not their family doctor. He just told Annie it was a normal part of aging. Not the specialist Annie eventually saw. "Alzheimer's," he said. But Jim knew differently. Annie's symptoms just didn't fit. They did fit this thing he found on the internet called "Lewy body disease." But the doctor just shrugged. "Never heard of it," he said and continued to treat Annie for Alzheimer's...with drugs that we know now that people with LBD are especially sensitive to. Actually, they aren't even recommended for people with Alzheimer's now!

Because of this, Annie was medicated with drugs that caused her to be hospitalized. Then, because the hospital staff did not know that a person with LBD could be much more mobile at some times than others, Annie woke up from being almost comatose to find bed rails keeping her from getting up to go to the bathroom. Always resourceful, she climbed over the foot of her hospital bed. She experienced her usual low blood pressure when she stood up and fell, puncturing her lung. She died a few weeks later, in March of 2003.

Even before Annie passed away, Jim discovered an online LBD caregiver support group, filled with people having similar problems to his as they attempted to care for loved ones with LBD. One of them, Imelda Fagen, started a website, called "Lewy Body Disease.com" which eventually became LBDA.com. People began donating money via the website, which Imelda passed on to various places dealing with LBD, such as hospitals or research centers. The group began to recognize that they needed to incorporate. Then they could use the money for their own goals.

In July of 2003, Jim, now a surviving LBD spouse living in CA, met with four women from the online group in LaCross WI and did just that. What to name their new organization was an issue that resulted in lengthy discussion. The Lewy Body Dementia Association was finally decided upon. Since Lewy bodies were involved in other diseases and disorders, these two words were discarded in favor of the more specific "Dementia." (This has continued to be an issue. "Dementia" has such negative connotations that many wish the group had chosen otherwise, as the Alzheimer's group did!)
  • Jim Whitworth was elected President and served his full 6 year term, the first two as President and the rest as a Director. "I was the only man and the women ganged up on me," he said."
  • Elizabeth Wittenberg, of Shelton WA, was elected Vice President but soon found that she couldn't do her part and care for her mother too. 
  •  Peggy Smith (SC) was elected Secretary/Treasurer and was active with the group for several years. Peggy's investment in the LBDA was perhaps the greatest of the five founding members. Her mother and at least one other female family member had LBD. 
  • Imelda Fagan (NY), whose husband had LBD became a Director. (The same Imelda Fagan, who had the website.)
  • Jan Childress (CA), whose father had LBD and later, whose mother developed Alzheimer's, was another Director. 
 The day after the group was incorporated,
  • Donna Rae (MI), whose mother had LBD, joined the group as a Director. 
  • John Young (TX) whose wife had LBD, also became a Director. He eventually became the group's third President. His wife was one of the few loved ones we all got to meet because he often brought her with him to the meetings. 
Next week, how Helen got involved in the LBDA and what the Whitworths went on to do.

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, September 28, 2018

Reminiscing, Part 2

The previous blog was about using general conversation, writing and music to help a loved one reminisce. The process in itself adds entertainment and quality of life for your loved one and likely for you too. When you view this as a contribution to family history by taking careful notes, you also add a sense of usefulness that dementia steals away all too often. This week is about a few other ways you can help a loved one remember events and activities in their past.

Use art. Try having an art-fest with your loved one. Use crayons, or even better, water-soluble (and ingestible paints) and big sheets of paper. It’s great for getting out feelings and the artwork will usually trigger memories that your loved one can share. Never aim for perfection. Expression, and memory-triggering are the goals, along with the fun of doing something together.

Use writing. If you loved one can still write, ask them to write out stories about things they remember. The sooner you can do this the better because writing is often one of the first abilities to go. My mother wrote out a story about how in her twenties, she lived on an isolated wheat ranch and made of pet of a magpie. I really value this story and I’ve used it in our family history. My aunt spouted poetry all the time instead of telling stories and I asked her to write her poems out, which she did. I think of her every time I read them…or hear one of the poems somewhere else. As with music, being a good writer isn’t the goal. Getting the stories down on paper or tape is. Have fun doing it!

Use quilts or other objects/activities. Many older women have quilts made with fabric from old dresses or other memory-triggering clothing. As with the photos, ask a few questions to get them going and then let them take the lead. If not quilts, look for something that the person has done. My brother-in-law worked with electronics his whole career, and did amazing work. He loved to talk Jim about electronics even after his dementia-dulled thinking no longer allowed him to do the work.

The final step is to make use of all the information you glean from your loved one. Put their stories together in some kind of notebook or digital album, along with those photos of now-named people. Even after your loved one can no longer tell you stories, identify photos or sing, they will enjoy looking at the albums, hearing you read the stories and singing to them. Enjoy!

While your main objective is to provide enjoyment and quality of life for your loved one, don’t discount the value of documentation. At our recent reunion, one family member brought a blown glass pitcher that had belonged to my grandmother. After she died, almost 100 years ago, the pitcher passed on to my father. He may have told my niece what he knew about his mother’s pitcher but now my niece is gone too. Neither she nor my father left behind any information about it—except for who it had belonged to. While none of these people had dementia, both my father and niece died early. Was it something my grandmother brought with her on her train-trek from Vermont to Nevada? Was it a later gift sent from her Eastern relatives? Or was it a prize purchase she found in a Western store? We’ll never know. Make an effort to get stories written down about special items before it is too late. Your younger relatives will thank you years 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, 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.