A note to all those friends and family members who think our loved ones are “just fine.”
“My friend came to see my dad and he greeted her and talked pretty good. The next time she came (he) had no idea she was even there and way out if it. It was refreshing to have her see what I see daily with the fluctuations in attentiveness. She finally gets what I try to explain to my friends.”
Whenever someone says “dementia” the vast majority of those not dealing with the situation automatically assume you’re referring to Alzheimer’s. They have no idea there are several different types of dementia with Alzheimer’s only being one of them. While some might not think that’s an important issue, for those dealing with Lewy Body Dementia, it’s a never ending source of frustration.
Lewy Body Dementia is not like Alzheimer’s.
There are some things in common, of course. According to Medical Dictionary “Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss or alteration of consciousness.”
Both Alzheimer’s and Lewy Body Dementia share those characteristics, but LBD has many added components not typically present in Alzheimer’s. It’s been said that LBD is like having Alzheimer’s, Parkinson’s, and Schizophrenia all at the same time. Memory and confusion, movement issues, and behavioral problems are all typical with LBD, but one of the most unique features deals with something known as “Fluctuating Cognition.”
Unlike Alzheimer’s patients who exhibit a continual decline (every time you see them, they’re worse than the time before), those with Lewy Body will have periods of apparent improvement interspersed with periods of rapid decline.
No one knows exactly why this happens, but one prevailing theory has to do with the way the disease attacks the brain. The theory states that as certain areas of the brain die, the brain temporarily re-routes the nerve responses to allow for a connection around the non-functioning area. This is often seen with stroke patients who (with physical therapy and time) often regain the use of a limb originally paralyzed by the stroke by training a different area of the brain to take over the duties of the damaged spot. However, unlike stroke victims who do not have continual damage, Lewy Body Dementia causes an ongoing destruction of brain tissue. Eventually, there are fewer and fewer pathways for the nerve impulses to use. These temporary pathways allow those with LBD to have periods of improvement that may last days, weeks, or even months, but as the disease marches forward, the periods of improvement become fewer and last for shorter periods of time.
Another fluctuation of ability that frustrates caregivers is something commonly referred to as “Showtime.” Showtime is a relatively short period (a few hours or a day or so) that occurs when their loved one has company, visits friends, or goes to the doctor etc.
They do not do this intentionally.
They do not think, “Ah, company is coming. I’d better be on my best behavior.” They have no control over when or why their thoughts and behaviors suddenly improve. One theory is that during those times, the innate desire to impress company simply kicks in. Unfortunately, Showtime takes a lot out of our loved ones. It’s not unusual for those with LBD to crash once they’re no longer surrounded by visitors, often sleeping for hours and slipping into an almost catatonic state that may last days.
“It’s very difficult to explain this to friends and family …as some still don’t quite see that there are any problems/issues with my Mom.”
This is frustrating for caregivers as the visitors tend to think their LO isn’t as bad as the caregiver claims. Family members will question the need for placement in facilities or will accuse the caregiver of exaggerating. Many friends and family will even blame the medications, suggesting our loved ones are simply “over medicated” and if the medications were removed, they’d be “just fine.”
Unfortunately, doctors often don’t witness the extent of the problems either. Our loved ones will often smile and answer questions with more clarity than they’ve had for months during that 10 minute appointment, making it difficult for the doctor to assess the progression accurately. Or as one caregiver put it:
“So often when we go to the doctor or a specialist, when asked how she is, she smilingly and beguilingly replies ‘fine.’ She can engage in conversation with vocabulary that otherwise eludes her, and diminishes the severity of the situation in the eyes of the clinician so frequently. The real problem, of course, is that the end the result is inaccurate assessment and, thus, ineffective treatment — or none at all.”
This situation is one of the reasons it’s imperative for the caregiver to keep notes and point out specific examples of issues typically shown by their loved ones when not in Showtime mode.
A sad component of fluctuating cognition unique to LBD is that often during these brief periods of clarity, our loved ones realize how much they’ve lost, resulting in deep sadness and depression. They may cry uncontrollably making caregivers wonder if the temporary improvement is a blessing or a curse.
If you have a friend or family member suffering from Lewy Body Dementia, and you are not the caregiver, please understand that your visits are only allowing you see a small sliver of the day to day issues. When the caregiver tells you stories of behavior that doesn’t fit with what you’ve witnessed, remember you’re seeing them at their best, not their worst.
Or as one caregiver said, “…they only observed a small window of Lewy reality.”
*Feel free to share this post if you feel it might help others gain a better understanding of the caregiving journey. If you’d like to follow this blog (it’s free) click on the follow button on the right side of this page and you’ll receive an email whenever there’s a new post. You can unfollow any time you wish.
*If you’d like to see past posts, go to the top of this page and click the “home” button and scroll down, or go to the “categories” on the right side of the page. There are also buttons at the top for helpful links, and other information.
*I’m also a published fiction author. If you want to check out my books, you can find out more about them here.
Lewy Warriors 
good post. my friends who want to be involved always make time to see larry. he’s still independent and living at home, but it *is* helpful that they see him when it’s not *showtime”.
some don’t come, for whatever reason.
LikeLike
This is spot on Lisa. Thank you for sharing. x Kirsten (daughter of a Dad with LDB)
LikeLike
I’m glad it hit the spot, Kirsten. It’s something we all struggle with, I think.
LikeLike
Good job, Lisa. Mom was definitely on her “A” game when I visited her last Monday & Tuesday (2/15-16) and was still on her “A” game when her hospice nurse saw her eating lunch and while doing her weekly visit with her on Wednesday the 17th. Mom prayed over our lunch so eloquently and clearly on Tuesday; it was like having Mom back — for a while. By Wednesday evening, she refused her dinner and crashed for bedtime at 5:30 pm. And then there’s the hallucinations! Thanks for putting this article together; time well-spent.
LikeLike
Lisa, I got a good one! Our neighbor’s a gun dealer. A friend called hubs to come visit, but hubs asked him to drive him to the gun shop where both friend and neighbor stupidly grinned and let their neighbor and friend with lbd dementia buy a gun! Who I ask is the slow one I ask?
LikeLike
I own a gun and have a husband with lewy body. what does this have to do with care for our loved ones?
LikeLike
If the gun is locked safely and your husband doesn’t have access, it shouldn’t be an issue. Unfortunately, the hallucination aspect of LBD coupled with paranoia and delusions makes firearms dangerous if the loved one can get to the fire arm. It’s possible for our loved one to see a member of the family and be convinced it’s an intruder or other potentially tragic situations. Early in my husband’s diagnosis, he was convinced he saw someone breaking into our barn. He went down during the middle of the night, carrying a gun. He said if it weren’t for the fact there were no footprints in the snow around the barn, he never would have believed it was an hallucination. I was asleep at the time and had no idea he’d done this until some time later. I shudder when I think that he might have shot someone.
LikeLike
thank goodness nothing happened. my gun is locked away, apart from the ammo. my husband has no way to access it. if anything untoward would happen, the dogs would be the first alert. nothing beats a noisy dog.
LikeLike
Great post. I am torn between giving my friends the whole story and letting them think that Gregg is “not so bad.” I don’t want pity for me and I want to preserve the respect that they have for Gregg. I wish I did not have to provide education about LBD, especially to medical professionals. I also hid a gun. We have a device that beeps when Gregg gets out of bed, so I (hopefully) will hear the beep and can monitor his activity. I guess this is the part of “in sickness and in health” vows repeated 51 years ago.
LikeLike
Funny you should mention that vow. I repeat it to myself regularly.
LikeLike
Lisa, this is spot on and certainly describes my husband. I am struggling with all the there being so much info about “ALZ and Dementia”. But very rarely is LBD in the title. How can we get the word out to educate people when so much attention is to ALZ. Would be nice if the titles said “ALZ/ Lewy Body /Vascular Dementia”.
LikeLike
I have definitely seen this in my mother. Sometimes I’ll think it’s “showtime,” but she’ll seamlessly go from high level discussion of a book we’ve just read to trying to tell the book group that their little seaside town is under attack from urban race rioters. You never know what you’re going to get.
LikeLike
So true, Leslie. My husband can discuss physics one minute then ask about the “workers” outside who are moving trees around.
LikeLike
I just found out about this term and it blew me away because I had been experiencing this behavior from my husband for quite some time. I know that some of our friends and even his doctor thought I was exaggerating his condition because when he was in their presence he seemed to be almost like he used to be.
Thank you for your blog.
Marguerite Miller
LikeLike
Unfortunately, Marguerite, those in the medical profession often only believe or understand what they read in their textbooks. Caregivers live in the trenches day in and day out. We know what it’s like. Blessings to you in your journey. Lewy is tough.
LikeLike
Thank you Lisa, for your article that I have ‘needed’ for so long. All of it is applicable to my Mum.
I diagnosed LBD in my mother (through research, every single night,in the few ‘restful’ moments when she’d be asleep)
“Showtime” was extraordinary, and still can be, even though the later stages are approaching.
I was ostracised by my entire family when, under her GPs instructions, Mum had to be admitted to hospital ‘for evaluation’ of her behaviour.
Preceding the hospital admission, siblings visited very infrequently,so Mum would ‘rise to the occasion’ mustering all her strength, when they did – it was a joy to see her adult children, naturally!
I would explain to them, (in their loud outbursts of laughter and loud voices, how too much noise, movement, stimuli, or more than one conversation at a time, etc, would leave Mum so weak, anxious, fear-filled,unsettled and agitated beyond words. I explained delusions and hallucinations! I begged literally, only for quieter visits and no expectations of Mum to make that cup of tea, etc she was offering! She was clearly not able! I was/am burnt out accommodating their needs and then, mum’s, after they would leave…
I pray that “Showtime” is recognised, widely throughout the world. That carers will at the very least, not be scorned, ridiculed, ostracised for trying to create an environment conducive to the needs of the LBD person. There are many crosses to carry throughout. And there are many variations as to how extensive the symptoms actually manifest.
Keep being the voice! All of you – please.
God bless you and give you strength.
LikeLike
An appendage to the above – whilst “crashing” following ‘showtime’ is typical, I’d like to add that ‘crashing’ in my mother’s case, at least, typifies extreme agitation; restlessness; relentless, extensive irrational demanding behaviour; before finally, the collapse into sleep, occurs.
This sleep in Mum’s case, doesn’t last very long.
There is no respite. I’m sure there will be many carers who experience this pattern of behaviour – all unwitnessed by anyone else. And you may be like myself, researching daily in the hope of finding some explanation for such behaviour.
So, just to re-cap _ there’s many painful hours endured, before the hour or two of sleep occurs…
Many thanks for this opportunity to ‘share and hopefully help’
God’s blessings
LikeLike
This is a great article and validates how I feel about showtime and LBD. I want to share it with everyone that I know! Thank you.
LikeLike
Thank you, Ann. Feel free to share as much as you want to!
LikeLike
Going back to the gun issue, I’m in the UK so we don’t have guns at home, but hubby used to hide knives and a baseball bat down the side of his chair or in his room because he was convinced that next door were trying to break in to burn the house down. At that point he could get upstairs where I sleep, so imagine how scary it was not knowing if he would attack me in the night thinking it was someone else.
LikeLike
jwbtlc@yahoo.com Very interesting
LikeLike