Understanding and Managing Fluctuations

This blog is based on a 2019 IDLBC presentation about fluctuations. This week's is by Tanis Ferman PhD, who is based at the Mayo Clinic in Jacksonville, Florida. Tanis is a pioneer in the work with LBD and one of our mentors.

Our bodies all have natural cycles of fluctuation in sleep, appetite, body temperature, hormone controls, alertness and blood pressure.

The fluctuations related to Lewy body diseases are different. They don't necessarily have a regular cycle or rhythm. They affect cognition but they can also affect motor function, communication and even behaviors. These fluctuations are not natural. They are caused by the loss of

• dopamine, important for movement, attention and reward centers
• acetylcholine, important for cognition, wakefulness and attention.

These fluctuations are not due to, but may be worsened by:

• age, dementia severity
• delirium (infection, dehydration, intoxication or withdrawal, metabolic issues)
• medical conditions, neurologic conditions (stroke, seizures)
• sleep issues, alcohol use, pain, discomfort
• mood, catastrophic emotional reactions
• medication side effects, including but not limited to:
• anticholinergic agents,
• dopamine agonists,
• sedating medicines,
• opiates,
• oral steroids

Care partners talk about the "Good Times" and the "Bad Times." Loved ones may fluctuate between these two poles several times a day. They start out with mostly Good Times and occasional short bouts of "Bad Times." Eventually this changes to the opposite, with mostly Bad Times and occasional Good Times.  During the Bad Times, a person is drowsy, zoned out and unaware. They are easily distracted, tend to use words out of context if they can communicate at all, and find performing tasks difficult or impossible.  During the Good Times, a person is awake, lucid, and aware. They are able to focus (pay attention), can communicate better and can perform tasks more easily.  Managing fluctuations involves:

• accepting them as a part of the LBD disease. Accepting allows you to let go of negative emotions that can make the symptoms worse and last longer.
• looking for patterns so that you can adjust activities to fit your loved one's more aware parts of the day. When is your loved one's most alert time of the day? That might be the best time to plan personal care. When is the time of the day when Bad Times are more likely to appear? That might be a good time to schedule naps.

Thank you, Tanis. Next week's blog will be a review of Showtime, which is probably the most difficult to deal with kind of cognitive fluctuation.

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 Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Preparing for That Long Slide

Two weeks ago, this blog was about recognizing that more than normal fluctuations had happened and the stress that accompanies such a slide. This week is about things you can do ahead to prepare for that time. Remember, preparation is like insurance. You certainly don’t want whatever it is you are insuring against to happen, but you know it can. Experiencing such a slide is going to be stressful no matter what, but having a plan in place and information available will go a long ways towards limiting that stress.

Know where to get help. Develop a list of places and people that may provide the help you will need. Call them now, while you aren’t in crisis and find out about their services. Sort them out by groups and grade them so that you will have a first and second choice when the time comes.

Plan for respite care: Jim and I are fans of planning a respite routine well before it is actually needed. Start out with just a few hours a week. Then with a routine in place, it can be expanded when you actually do need to get away for a while, even overnight. This initial time is very stressful for both of you. Having a respite routine in place will reduce your stress because you will already have a plan. It will reduce your loved one’s stress by keeping change at a minimum.

You may already have friends or family coming to stay occasionally. This will not be enough. You will need more than a few hours of time that is often clouded by worry that your helper may not know what to do if something goes wrong. After a long downturn, regular respite care needs to start as soon as you can get it set up. You can choose between at home help or respite care in a long term care facility, or if your loved one can still function well enough, adult day care. The same issues that apply to choosing long term care apply to chosing any of these.

If you plan to use home care, start using it immediately for a few hours a week—enough to build a relationship with your helper. If you plan to use respite or day care, start visiting the facility. Go to lunch or dinner there, and use their day care services. Even “take a vacation” together and visit overnight.

Equipment: You may suddenly need a wheelchair, a bathroom commode, a hospital bed or even a lift. Know where you can get these supplies. Physicians can write prescriptions so that Medicare will cover much of the cost. Find out now what the process is for this to happen. For example, can you call in your request or does the doctor need to see your loved one and evaluate the need?

Hospice. This may sound extreme, but it is also practical. Hospice offers the services and equipment you need to make your loved one more comfortable and you less stressed.

Walter’s slide happened after a bout with a UTI. The doctor told us the end was likely near and suggested Hospice in our home. It helped physically but I became really depressed. I checked out funeral homes and looked at urns. It’s been three years now and Walter is still living. He never recovered from his downturn but he still has periods of awareness. That’s when he tells me he is going to live a lot longer than I think! Walter was on Hospice for a year before they decided he didn’t qualify. By then they had helped me over my depression and I was able to find a LTC facility for him close to home. --Joan

Hospice requires a doctor’s documentation that death is likely within 6 months. However, many people, including those with LBD, recover enough that they go off hospice and live for many months or even like Walter, for years longer. That’s because hospice is designed to decrease stress and we know what stress does to the Lewy team! Using hospice is not an admission of failure or even that the end is coming in less than a year. It is a practical use of available services in a time of severe need. Hospices vary in the services they provide. Read more about Hospice in the 6/15/13 blog.

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

The Long Slide

You expect LBD to fluctuate. That’s one of its defining symptoms. But, then there comes a day when functioning takes a long slide downward, with a lot more confusion, agitation, sleep problems and less mobility.

When this happens, the caregiver won’t be able to think clearly either. “I told myself that fluctuations happen and upturns follow downturns,” Mary said. “Until that last slide, Lloyd still had wonderful periods of alertness. I couldn’t believe that would end anytime soon. I knew that with LBD, a downturn could be steep and that a person seldom returned to their former functioning. But I guess that I felt that planning for such a slide was inviting it to happen. And so when it did happen, I wasn’t prepared. I was overwhelmed with the extra work and the additional worry but I didn’t even recognize that I was in crisis too until a friend asked me if I didn’t think it was time for more help.”

Any number of situations can bring about these sudden downturns: A simple cold or a serious kidney stone attack; a fall or a painful injury; ongoing problems like UTIs, dehydration or even a supposedly good thing like too much excitement over a happy event. Or even nothing identifiable. A healthy, low stress lifestyle can extend cognition and improve quality of but it does not necessarily extend life. When reserves built up by careful living are gone, mind and body degenerate very quickly. It is no one’s fault. It is simply the nature of the disorder.

As when your loved one can no longer make their own decisions, this is another turning point for which it helps to prepare, earlier than later. Like Mary, it is easier to think that things will go gradually downhill, with expected fluctuations but nothing drastic. They likely will, perhaps for years. But the chances are that eventually, a slide will happen. What will you do then? How will you deal with it when all of your energy, time and attention are taken up in dealing with these new, overwhelming problems? Preparation for a downturn does not mean that you expect or want it to happen. It means that you know it could and that by being prepared, you won’t add to the problem by being so stressed. Think of such preparation as insurance—something you hope you never need but will be very grateful for if you do need it.

As it did with Mary, a downslide tends to sneak up on you, adding work and worry. Before you realize it, you will be so embroiled in just getting by day to day that you may not recognize how stressed you really are—or know what to do about it if you do recognize your stress. Thus, the first step in preparation is setting up a system that will help you recognize that this downturn is different from those in the past.

Make a list that you check daily. If you answer yes to any of these questions, it is time to call for help:

• Has it been more than a week since the slide, with little or no recovery or worse, more decline?
• Am I are feeling overwhelmed by the physical requirements of caregiving?
• Am I getting so little sleep that my caregiving has suffered. Am I less patient or easier to anger?
• Do I feel that there are not enough hours in the day for everything I need to do? Do I seldom take anytime just for me? Am I too tired to enjoy it when I do?
• Am I still un-revived by a few hours of respite? Do I come back still feeling overwhelmed, anxious or tired?

Of course, knowing that you are stressed simply creates more stress unless you know what to do about it. Next week will continue some ways you can prepare for that long slide, and have the information you need ready to use when the time comes.

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

Two of a Caregiver's Best Friends: A Journal and a Support Group

“Now I’m supposed to keep a journal?” Claire, a fiftyish woman with a harried look asks incredulously. “As if I have time for that when I’m doing all these other things I have to do. I don’t understand why Leon can be so like a two year old, getting into everything and so dependent I can’t even go to the bathroom alone and then when we go to the doctor, he’s just fine. No wonder the doctor doesn’t do much. Why does Leon do this? I get so mad at him. Why can’t he be that sharp with me? Is the doctor more important to him than I am?”

“Of course it isn’t just the doctor. He did the same thing when his daughter, Julia, came to visit. I’d been telling Julia that I was at my wits end with her dad. That I needed her to help me decide what to do about him. And so she came to visit him. Guess what? Now she thinks I’m bored with her dad and that I want my freedom without the hassle of a divorce. ‘Or why else would you want to put away such a gentle old man?’ she asked me. Gentle? He got so angry at me the other day that I thought he was going to hit me. He was sure I was setting up a date with some guy on the phone. It was a perfectly innocent discussion with a salesman but I couldn’t convince him of that. He remembers things like that, but he can’t remember from one minute to the next when I do something nice for him. Now he’ll probably tell Julia I’m running around on him. I’m at my wits end.”

Claire is dealing with fluctuating cognition, a hallmark symptom of LBD. It’s her first time at a support group and the group members have suggested that she keep a journal so that she can have a record of her husband’s fluctuating behavior. Her reaction is a common one. She isn’t receptive to adding another task to her already overwhelming caregiving job. Claire expresses many issues that new caregivers have:

• She takes Leon’s fluctuating cognition personally. This is a hallmark symptom of LBD. A person can carry on an intelligent conversation one moment and be utterly confused the next. (See the x blog for more about this symptom)
• She doesn't understand the special “Showtime” aspect of fluctuating cognition where a PwLBD will act with clarity with someone other than the caregiver then revert back to his normal confused state when that person is gone.
• She still believes she should be able to reason with Leon.
• She doesn't understand that Leon will remember the things in his reality, especially the negatives like her “infidelity”, easier than he can those in her reality—the nice things she does for him.
• She doesn't understand that her agitation just makes things worse because he will mirror the intensity of her response.

Claire made a great first step towards understanding Leon’s disorder—she attended a support group. Often the members, who have experienced the same issues Claire has, can offer her more insight than the doctor can.

Their suggestion that she keep a journal is right on. She can use it:

• As an on-the-spot record of Leon’s fluctuating behavior that she can show to the doctor or family members to support her own words. Videos and audio recording work well for this too.
• to keep track of those behaviors like Leon’s delusions of infidelity so that she can discuss them at her support group. That way she can learn better ways of dealing with these than becoming hurt angry angry.
•  to track Leon’s medications and their results. Because LBD is a progressive disorder, a person’s reactions to drugs will not necessarily continue to be the same. What once worked may now make symptoms worse, or may stop working at all or…
• to vent in a safe way—and perhaps be able to keep her cool with Leon, thus lowering his stress level.
• Can you think of other reasons for keeping a journal? I’m sure there are many!

Read more about the benefit of support groups in the 10/1/11 and more about fluctuating cognition in the 10/26/12 and 5/12/12 blogs. You can also read about LBD in general in A Caregiver's Guide to Lewy Body Dementia by Helen and James Whitworth. You can buy this book and many other LBD related books from our online store at LBDtools.com.

Fluctuating Cognition: A Setup or a Gift

Donna is fairly new to the LBD journey. Her husband, Albert, was diagnosed with mild Lewy body dementia a year ago. There was an initial disbelief over the diagnosis, but once she and Albert and their two grown daughters accepted that they were on this journey, it wasn’t so bad. In fact, Donna said, “It was really a little easier. Now I understood why Al had such a problem doing things he’d done for years, like putting away his clothes properly.”

But then, as it does with everyone eventually, Lewy got worse. Al began having delusions and accused Donna of stealing his money. When he got physical, Donna became frightened and called his doctor who admitted him to a psychiatric hospital. Not the best choice for someone with LBD, but at least they were apparently aware of Lewy’s drug issues and didn’t try to calm him with antipsychotic drugs.  And Donna was assured that Al, a veteran, was eligible for Long Term Care benefits. She applied immediately.

Two weeks later, Donna was pleased to hear that her application was “one step away from acceptance.” By then, Al’s delusions had stopped and he began campaigning to go home.  Since he seemed to be his old, mild self, the doctor complied after a few days. Donna was ecstatic! “He’s so much better—why, we even uh, did it, last night. That’s not happened for so long it’s a wonder I remembered how!”

And then, Al was delusional again. This time he thought Donna was a nurse in bed with him—but still after his money. This is when Donna showed up at a local support group, devastated. She told the members, “I thought he was well. But now, he’s just as bad as he ever was—No, he’s worse. He didn’t even know me!”

Fluctuating cognition (see our May 25 blog) can be a terrible setup for the new LBD caregiver like Donna. If you believe, like Donna did, that the Lewy rollercoaster isn’t going to go back down, that the “recovery” is going to be permanent, you will be horribly disappointed when your loved one starts acting out again. The more experienced LBD caregiver accepts the gift and enjoys this “time out” with her loved one, making the most of it while it lasts. But she knows it is temporary and although of course, she’s sorry to see this time of awareness end, she isn’t surprised.

The story doesn’t end there. Al went back into the hospital but now Donna was told that he was no longer eligible for VA long term care benefits…he had recovered and didn’t qualify anymore. She’d have to reapply! Again, the people who needed to know—the doctor, the facility, even the VA—weren’t aware of Lewy’s fluctuations.  

October is Lewy Awareness month. It’s almost over for another year, but the need continues. The list of people who need to know is long…family members, doctors, nurses, hospices, VA officials, and many more. We need to extend Lewy Awareness to all year long, not just for one month. And we need to focus on things like cognitive fluctuations as well as the drug problems which, although very serious, are not the only way that our loved ones get short changed or even damaged by lack of knowledge in the medical community. 

Fluctuating Cognition: A Blessing and a Bane

One way that LBD differs from other dementias, is the occasional window of clarity, where our loved ones return from their journey into the confusion of LBD and appear to be very similar to their old selves…alert, verbal, charming, compassionate, humorous, knowledgeable. We all look forward to these times, glory in them when they arrive and mourn for them when they leave—usually without warning and far too soon. In A Caregiver’s Guide to Lewy Body Dementia, a poem by Lynn Davis says it all:

An Old Flame

Yesterday I had a chance encounter

With an old flame.

He was every bit as charming as I remember,

And I was so glad to see him.

We had dinner together and talked

About everything and nothing at all.

It made me feel young again

And yes, I even flirted a little.

It was just so nice

To spend an evening being “normal.”

I don’t recall exactly when he left.

I just looked up and John was gone

And Lewy had returned.

But there’s a flip side. It’s called “Showtime.” That’s when our loved ones are alert in the presence of someone other than ourselves…often someone that really needs to see them the way they usually are. Over and over we hear the story of LBD silenced loved ones shuffling up to the doctor’s office, barely able to walk. Then as soon as they see the doctor, their posture improves, the shuffling becomes a walk and they start talking in full, clear sentences. A Lewy-savvy doctor understands Showtime and plans for it. An initial visit should last long enough to give the Showtime a chance to disappear—a couple of hours or so. Some doctors ask for daily emails that go in the chart and show an ongoing record of behavior. Others may ask you to keep a daily journal and bring it with you.

And there are the family visits. On one hand, it is wonderful that the family—and the caregiver as well—can enjoy your loved one at his best. However, if you have been telling family about problems, asking for help, or even considering residential placement, they may think you are over-reacting. “He doesn’t seem that bad to me,” is the understandable response.

There’s the grown child who prefers not to entertain the idea that their parent might have a disorder like LBD. They see the Showtime and ignore anything else. “Dad’s slowing down some, but he looks all right to me,” they say. Again, time may be the answer. Ask that family plan longer visits; long enough to outlast the Showtime. Caregivers have also used audio recorders or video cameras to record their loved one’s behaviors for unbelieving family—and the doctors too.

Blended families can be even trickier. A grown step-child may blame the step-parent. “Dad’s fine. If he’s worse when we aren’t here, then it’s obvious that my stepmother is the one causing the trouble.”  I just finished reading Going Mad, by Carol Pendergrass. This is the ultimate horror story of LBD and a blended family. Whether you have a blended family or not, read it and be sure to take all the legal steps she recommends—early in your LBD journey.

When fluctuating cognition and delusions combine, life gets even more surreal. Remember, delusions are your loved one’s worst fears—seen by them as fact. (See my March 21^st and April 21st blogs.)  Harry tells his grown son, Clay, that his wife of ten years is trying to poison him because she has a lover. Harry has never been one to make things up and except that he seems genuinely frightened, he is acting normal—asking about the grandchildren, Clay’s wife, etc.  And so why wouldn’t Clay believe him? Oh, yes, there’s that diagnosis of Lewy body dementia—but that’s a lot of b.s. anyway—probably something else his stepmother has made up.  The answer here is to somehow educate Harry about LBD and get him to believe that he can help his father more by decreasing the stress in his life than by adding to the drama. If you have a Lewy-savvy doctor, family office visits might help. Harry will probably be more able to accept the doctor’s words than his step-mother's—especially if some hope and suggestions for things that Harry can do to help come with it.

And that’s the bottom line: education. The more Lewy-savvy your doctor is, and the more Lewy-savvy your family is, the less stressed your loved one will be. And lower stress means more Good Times for all of you to enjoy.