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

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.

Saturday, July 9, 2016

Showtime and Hospice

This week, we are back with Mary and George, the hypothetical couple who helps me talk about caregiver issues a little more personally. George has had LBD for a few years now, and Mary is his spouse and caregiver. They just had a week of family visits and excursions. George rose to the challenge and not only was able to enjoy his grown children’s visit in his home, he played with the grandkids and even went out to dinner with the whole group a couple of times, all without any major incidents. But it’s been several days since the kids left and George is sleeping a lot. When he’s up, he can’t do much more than sit in his recliner, barely able to talk. He’s not eating and he can’t seem to stop drooling. Mary is worried. One part of her says it is time to contact hospice. Another part resists; she really can’t accept that their LBD journey is that far along.

Many of you are nodding already. You know what happened. George had a wonderful week of Showtime with his family, where he was “almost normal.” Now he is paying the cost, exhaustion with a lot of sleeping and less than usual abilities even when awake. This is normal. Showtime is really hard work! George will likely be functioning better in a few days although a whole week of Showtime is pretty stressful and he may not return all the way.

That said, this might be a great time for Mary have him assessed for hospice. This doesn’t mean that she expects him to die in the next week, or even month. It just means that his condition may presently meet the requirements for hospice and they have SO MUCH to offer caregivers that it is worth it to apply. It is very likely that George will eventually improve so much that he will no longer qualify for their service and be removed. But in the meantime, he and Mary will get the benefit of those services AND George will be all signed up. This will make it easier to reapply when his condition degenerates again.

Mary already knows which hospice service to call. Because LBD is a terminal illness, Mary knew that hospice would likely be needed. Early in the journey, while the decision was an intellectual one rather than an emotional one, she was able to make a thoughtful choice, with much less stress. This is important. If you wait, you will be faced with choosing from a multitude of hospice services at a time when you are too stressed to make good choices. Mary called several groups and asked questions about which of George’s drugs they considered “palliative” and therefore would allow him to continue taking and which they would not. She also asked how familiar the group was about LBD fluctuations, so that George would be less likely to get dropped from service because he was exhibiting Showtime for the evaluator.

When Mary called Karen, her support group facilitator, and told her about George’s lassitude, Karen suggested that Mary consider hospice 'caregiver help' rather than 'heralding the end.' “It’s a lot easier to accept that way,” Karen explained. People can and do live on hospice for many months or even years. My sister was on it for nine months. This was my introduction to hospice and it was a blessing for both of us. She stayed on it the whole nine months, but people also go on and off it as their condition changes. A person gets such good care with hospice that they will often improve enough that they don’t qualify any more. Then when the disease progresses and they qualify again, they can go back on the service.

Mary did call hospice and George was accepted. He stayed on service for a month before he improved so much that he was dropped. During this time, Mary learned what to expect and how much she appreciated the extra help. As George declines, she won’t be hesitant to apply again.

Learn more about hospice in the 6/15/13 blog, and in our books.

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 1, 2016

Traveling in the RV and A Question about Tanning

We are on the road again and so posting may be erratic…whenever we can find a wifi connection strong enough for uploading. This year, the last part of our journey will include a stop at the World Parkinson’s Congress in late September, in Portland Oregon. I'm sure I'll be blogging more about that later in the summer. Our books will all be on display there. It should be quite a show and so I hope many of our readers come out. If you see us, do stop and say hi!

Traveling with an RV is sort of like living with someone with LBD…you never know what the next crisis will be. Sometimes things just go fine and then they don’t. With both LBD and the RV, good, knowledgeable care can make the problems less. But many times, the problems happen anyway. We are already having troubles with George ( our 2008 Georgetown Class A motorhome). We will be stopping in Spokane where we bought him to either have him repaired or trade him in for a different one. That’s one of the differences between motorhomes and LBD. You don’t get to trade it in…you are stuck with it and the problems it causes. We hope that isn’t the case for us with George. He has acted out one too many times!

We just finished a visit in California with Jim’s daughter, Jacquie. When she reminisced about her mom, Annie, whom we write about quite a lot, she had a question that we couldn’t answer. Annie loved the sun. This was during the time when tanning was the thing to do and she always stayed very tan. She loved to lay out in the sun as much as she could. Jacquie wonders if that could have had anything to do with causing her LBD symptoms. Neither Jim nor I know of anything that would support her hypothesis, but I thought I’d throw it out for people to discuss.

My idea was that her obsession with the sun might be LBD caused, rather than the other was around. I know that people with dementia definitely become obsessed with a behavior or idea and act on it to excess. Annie was obsessed by tanning long before she had memory problems, but she was already having periods of irrational anger, and so her thinking processes were probably being affected. That’s what LBD often does: it messes with the thinking processes even before you are aware there is a problem! Then, if the thinking is messed up, obsessions can happen early on, often before memory loss. What do you think? Do you know of any research that supports Jacquie’s or my thoughts? Or negates them?

Jacquie isn’t alone. Family members often see some behavior that’s excessive or different from the norm and wonder, “Could that be why, or at least connected?” What about your loved ones? What behavior have you seen that made you ask such questions? What have you found out about it? Feel free to write comments, get a conversation going, even.

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, June 24, 2016

Using Improv with Dementia, Part 3

The previous two blogs have been about using improvisational theater, or improv, as a tool for dealing with irrational statements or behavior. But it can also be used by the person living with dementia (PlwD) as a way to stimulate the mind while being creative and social. As other creative activities do, participation in improv acting increases a person's feelings of accomplishment, self-worth and enjoyment. These pleasant feelings last and improved mood--and thus, behaviors--for hours after the experience is over.

"Improv is all about being in the moment, which for someone with memory loss, is a very safe place to be." says Mary O'Hara, a social worker involved with an improv project for people with early dementia. When a person with dementia feels safe, they are less stressed and their symptoms decrease. This in itself, makes improv a valuable stress management tool. But improv seems to improve mood for an extended period of time as well.

Improv players collaborate to create the action, which unfolds in present time, without a script. It plays out in the here and now, with no memorized lines, and no experience required. Since the story goes wherever the players take it, there is no set story line and no special sequence to follow. This makes it perfect for people whose memory is failing, who live in the present, and who have difficulty following sequential steps to a goal.

Research supports the use of improv. People who participate in cognitively stimulating activities and are socially engaged have a better quality of life and suffer less depression. In fact, social interactions may be as important for maintaining cognitive abilities as exercise, long known to be "more effective than drugs" for dementia care. This is especially important with LBD, where a degeneration of thinking leads to delusions and other BPSD (behavioral and psychological symptoms of dementia) and where LBD's drug sensitivity makes using BPSD drugs a concern.

Guidelines for using improv with PlwD are similar to those for any other improv acting:
  1. At least two people participate in an impromptu skit. One says something and the other responds, and so on. Physical action, such as dancing or pretending to throw a ball, is fine, but so is simply sitting in a wheelchair and talking.
  2. Say yes. Whatever your partner says, you accept it at face value. You never disagree. Be positive--negativity blocks.
  3. Encourage. This is the "Yes, and..." part of improv. Always support your partner by taking what was said--or done--and adding something to it that keeps the conversation going and moves the action on.
  4. Go with the flow. Always just move on, no matter how zany the idea is or how weird the conversation gets. Nothing is scripted and so there are no "wrong" responses.
  5. Accept failure. As dementia encroaches, failure becomes a full-time resident. Failure at things you used to be able to do well, failure at remembering the right word, failure at understanding what's said, and so on. In improv, failure is expected and celebrated with laughter and another attempt, or a twist in the action. You are responding on the fly and don't have time to worry about if it is right or not.
Participants in the eight-week improv project reported feeling more confident and able to cope with their diagnoses, as well as less isolated and depressed. Players commented:
"I don't know what I'm doing, but it's freeing."
"I've learned that I am imaginative, playful and creative...I can be funny."
Care teams can do improv by themselves--it only takes two people. However, it might be more energizing and fulfilling if a group of people with early dementia get together and interact. Talk to local improv groups and see if they would be willing to sponsor such an event. That way, you get knowledgeable people to guide the action.

For an example of PlwD using improv, view "Improv and Alzheimer's: Helping patients remember." 

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.

Sunday, June 19, 2016

Using Improve with Dementia, Part 2

Last week the blog was about using improv with hallucinations and delusions. This week, it is about other helpful ways we can adapt improve guidelines for use with caregiving. If you didn't read last week's blog go back and do it now...or at least watch the video.

Accept offers and gifts. When an improv actor offers another one an imaginary gift, the second actor takes it and runs with it, adding information and action. Take what your loved one offers, be it a hallucination, memory (real or false) or a comment (pleasing or not) and find some value in it. Show appreciation, talk about feelings, ask for more information.

Develop options. People with dementia respond with knee-jerk actions because their brains don't give them a choice. Caregivers can consider responses and choose the best one. Like improv actors they can go from "I don't like what just happened," to "What can I do with what just happened? How can I make it work for us?" This takes knowing what doesn't work as well as what does. With that, they can reject explaining, defending and arguing as ineffective and choose a more positive action like joining their LO's reality and moving the action away from negative feelings.

Don't force an agenda. Improv actors may start out with an agenda, but they work to make it acceptable to their audience. Caregivers often have an agenda too. Some things that make an agenda more acceptable are small steps and suggestions that are more of an invitation. "Do you need to use the bathroom?" Then, "While we are here, how about a shower?" Take time, and if they don't respond well, pull back and create another invitation. Leaving the room often helps. Then return with a different invitation, "The bathroom's toasty warm. Let's do that shower, OK?"

Commit 100%. Improv actors have to be willing to commit to BEING their character. For that moment, they ARE whoever they portray and they speak as their character would speak. Caregivers must do this too. When you accept a role in their LO's drama, you must play the part with conviction. For example, if the LO accuses you of infidelity, think of how you would feel if it were really true and you really did want to be forgiven. Speak with that conviction. After all, you want to be believed so that the negative feelings will go away.

Touch is powerful. You don't always need words to set a scene. You probably touch your LO a lot, just getting work done. You touch while helping with dressing, bedtime, and bathroom duties, eating, sitting, etc. That's not the same as meaningful touching, like hugging, holding hands or a pat on the back as your pass. These touches show you care, that you really want to be in this relationship.

Accept change. Improv acting requires that an actor can respond to changes quickly and move on. So does dementia caregiving. Dementia is progressive and will continually change your LO. Demanding that things stay the same will only bring stress and frustration. This can be especially difficult in early stages when your LO often looks and acts the same as in the past. But the quicker you can accept change, the less stress there will be.

Collaborate. Improv acting is usually done with a couple of actors, sometimes more. It only works if everyone works together. Caregiving is like this too. Surround yourself with other "actors." Don't try to do this alone. Join a caregiver support group. Have a "phone buddy," someone you can phone and vent with, etc. Get someone to help a few hours a week at least. I know, you hear this a lot. But have you done it? Are you still trying to do it all?

Give yourself permission to fail. When improv actors make mistakes, they laugh and move on. Everyone fails. No one is perfect. Trying to be the perfect caregiver is a setup for failure and stress. Give yourself permission to fail. See it as a gift of learning, a "learning experience." I tried that. It didn't work. How else can I do this? Then forgive yourself and move on.

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, June 10, 2016

Using Improv with Dementia, Part 1

Improvisational theater, or improv, is where the dialogue, action, story, and characters are created collaboratively by the players as the improvisation unfolds in present time, without a script. Sounds a lot like real life, doesn't it, where we don't have a script and we make up the conversation as we go along. It is actually a lot like dementia caregiving too, where the LO lives always in the here and now, and the caregiver doesn't know what will happen next. Just as with improv, caregivers have to take what's offered and run with it. We don't get to chose WHAT we get, but we can choose how to react.

The following video compares improv acting to working with dementia. They talk about Alzheimer's but it works with LBD too.

 from TEDMED

When your loved one presents you with a hallucination, a delusion, or a false memory, what do you do? In improv, there are some guidelines. It doesn't take much adaption for them to work for caregivers too.

Listen. This is the first requirement. Easier said than done, especially when LO's reality doesn't match yours. Take a deep breath, and just listen. Listen with your ears, eyes and heart. Be especially careful to "hear" the emotions involved. People with dementia become driven by their emotions.

Say "Yes, and..." That is, agree, in action if not in words, and add something non-conflicting that moves the action on. An improv actor accepts what's offered and goes with it. When Annie saw children coming out from behind the TV, Jim let his actions show that he accepted Annie's reality when he looked to see where the children were coming in, and then he moved the action on by ushering them out the door.

Accept the reality given to you. Your LO's reality is the only one that counts. Don't explain, defend or argue for YOUR reality. This is not YOUR play, you don't get to set the scene; your LO does. When Jake's wife accused him of infidelity, he didn't defend himself. She had set the scene and cast him in the role. Like a good improv actor, he went with the flow and told her, "I'm sorry, I won't do it again."

Be in the moment. Improv is all about what is happening this minute--and the feelings involved. So is dementia. Your LO lives in the here and now. When Jake's wife accused him of infidelity, he knew that all that mattered was that moment, when his wife was fearing abandonment, and voiced it her delusions. It didn't matter that they'd been married for 50 years and he had never been unfaithful. That's in the past. He knew that she could only deal with right now. And so he entered her reality and then, like Jim with the children, ushered out her fears, "I won't ever do it again."

Focus on the emotion. A lot of acting involves making emotions believable. As dementia progresses and thinking becomes more difficult, it is replaced with a focus on emotions. If you, like Jake, pay less attention to the words and more to the feelings that led to them, you will probably be more successful.

This isn't all! Next week's blog will be about some more ways that we can use improv acting guidelines with dementia caregiving.

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.