Constipation is a big issue with dementia, especially LBD, where a compromised autonomic nervous system can slow down the whole digestion process. In fact, it is often one of the first symptoms that care partners remember, looking back. Of course, they didn’t connect it with LBD at that time. This was the case with Jim’s first wife, Annie. She had chronic constipation for years before she had any cognitive evidence of dementia. In fact, it was so bad that she chose to have an elective surgical procedure to improve it.
If she and Jim had known what he knows now, they would never have Bene that. But back in the late 1990’s very little was known about LBD and neither they nor any of their doctors thought to connect constipation with dementia. Nor did they consider the risk of surgery for someone who was already exhibiting more than one symptom that we know now warns of LBD: her constipation and active dreams—and age, which is the most common risk factor of all. It was after that surgery that she started having hallucinations and Jim took over the cooking after one too many “burnt offerings.” Once a skilled cook, Annie was no longer safe around a stove.
In Annie’s case, dementia wasn’t even considered as the cause of her constipation. But issues with identifying a cause can be the reverse too. Once dementia is known to be present, it is all too easy to blame it for any problem that comes up, including constipation—and often you’d be right. However, as a substance-abuse nurse, I learned that “an alcoholic has the right to any disease known to man.” This applies to dementia too. There are many other causes of constipation besides dementia. Crohn’s disease, for example.
Fast forward twenty years, and Jim is now the one experiencing bouts of constipation. Although he doesn’t have dementia, he is well past 60 and age is the biggest risk factor for constipation. However, in his case, we think first of Crohn’s disease. He hasn’t had a bout of Crohn’s for a couple of years, but we still worry. This disease, sometimes called ‘arthritis of the intestine” inflames the bowel lining and shrinks its working space, making constipation a constant threat. We know that even if it isn’t involved yet, it might be if we don’t get the constipation under control.
There are many other conditions besides age and Crohn’s that increase constipation risks. I’ve already mentioned LBD. It and other Lewy body diseases like Parkinson’s impair the nerves that control the muscles in the bowel and make them less effective. So do other neurological problems such as multiple sclerosis and stroke (common with vascular dementia). Hypo-thryoidism, or an underactive thyroid gland, decreases hydration and fosters constipation. So does diabetes, very common with seniors in general and especially common with Alzheimer’s. Depression, especially common with LBD and often present in other dementias, can slow down everything, including the GI tract.
Lifestyle can also be a risk factor. The body requires exercise and adequate fluids to function properly and fiber to foster digestion. In our travels, exercise is sometimes limited, and not just when we are traveling from one spot to another. We’ve been in both very warm and very chilly areas. Both make it tempting to stay in our comfortable RV instead of getting out and exercising. Lack of exercise is also often an issue for a person living with dementia, especially if mobility is already a problem. Hydration can be too. Jim has had to learn to drink more water, something he never did as a younger man. This becomes especially important during warm weather. Our bodies need more then. We aren't as careful about what we eat when we travel either, making do with things like fast foods that seldom have much fiber.
Certain medications can also be constipating: sedatives, narcotics, certain antidepressants and those that lower blood pressure. Since many people living with dementia often take these drugs, a care partner needs to be aware of this and be alert for early signs of constipation. Better yet, work with the prescribing physician to use drugs that have less constipation risk…or find an alternative non-drug method of treatment.
OK, so now we know a little about the causes, but what care partners really want to know is how to prevent, identify and treat constipation. Keep tuned. That’s what the next blogs will be about.
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 26, 2018
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.
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.
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!)
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.
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.
- 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.
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.
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