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.
Monday, August 29, 2016
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?
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?
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.
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!
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.
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
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.
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
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.
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