Behaviors, durations, severity, and the overall journeys will differ. Vastly.
There will likely be many similarities and commonalities, but all the terrifying stories you may hear do not necessarily have to come true. That said, just getting Dementia with Lewy Bodies is a horror show on its own.
Get Ready to Board The Lewy Body Dementia Rollercoaster
After diagnosis, don’t be convinced that a change or symptom is permanent, nor that it is the inevitable sign of the dread “final stage.” It could be…. but it could also be one of the constant fluctuations that bounce many Lewy Body Dementia sufferers all over the board.
I have seen both incredible rallies from frightening low-points, precipitous drops in ability and cognition, gradual declines, and improvements. But more than anything, I have seen the condition fluctuate widely, with extended periods of consistency.
Abandon Your Preconceptions About Behaviours
More than anything, be aware of exactly what is going on with your loved one, without preconceptions of what something means, or is a sign of. This requires sensitivity, careful observation, and patience. Remember that the conditions change, sometimes in an instant, so the behaviour you are witnessing right now, may be very different a moment from now, and you may have to act accordingly.
Learn as much as you can. There are many sources of information online, in books and on video and, hopefully, in person.
Be patient with yourself and with the one you’re caring for. They may surprise you more than you expect: I hope it’s a pleasant surprise. There will be no shortage of unpleasant ones, so celebrate every single positive one, and some of the neutral ones, too!
Again, every person with Lewy Body Dementia is going to react somewhat differently. Don’t base your expectations on the experiences of someone else. The famous, or infamous, cases like Robin Williams will likely bear only passing resemblance to your own experience.
Strength to you!
You can listen to the story above by clicking the red “play button” below.
The only constant we have is the unpredictability of Lewy-Body Dementia, as we wait once more for the Lewy-pause to end and the precipitous decline to begin.
The wait is extremely difficult because there seems to be no way whatsoever to know when the next change will arrive. Soon, in the future, never? In a way, that can also bring one tiny element of comfort sometimes since one never knows if any issue will develop, or whether something that is dreadful will ever recur.
Your essays are so well written and give me information that is helpful in navigating our journey. Thank you so much.
Thank you for your kind comment, Joan. We need all the help, advice and information we can, and much of what we need to know is common to each other. May your journey with Lewy be the best it possibly can be. I’m sure it will be, too — you’re doing everything right by preparing and trying to know as much as possible.
> Strength to you, Joan! Timothy Hudson
Mr. Hudson, first of all thank you for the wealth of information you have provided during this terrible trip LB trip that we are on. Feelings of defeat is a phrase I have used several times lately. My husband was first diagnosed with Alzheimer’s Disease two years ago around August 2016. But, I had noticed a decline in his thinking process many years before then. His PCP would just say it was all age related and probably partly due to medications he was taking for his heart since early 2007 when he suffered two heart attacks back-to-back. His AD medications have been adjusted so many times since his diagnosis because of the fluctuating symptoms we have dealt with. Now his PCP and Neurologist both agree he has LB with Parkinsonism and behavior issues. He is verbally abusive most of the time and he has been physically violent on occasions. His obsessive paranoia over material things has caused his grown children to stop coming around us. At one point a few weeks ago I dialed 911 and asked for an ambulance and sheriff to come and take him out of the house because I was afraid of what he might do to me. The police came first and tried to speak to him while he was spewing threats at me. But when they asked him if he thought he needed to go to the hospital he said no. I was told by them later that they could not do anything if he didn’t want to go and the things he was saying to me were only words. Since then I have found out that he is too aggressive to go to a NH with a Alzheimer’s spot. They have concerns that he may become violent and injure himself, another resident or a staff person. I’ve also been told that he is not aggressive enough to meet criteria for a Geriatric Psychological evaluation. They told me that he would have to be constantly violent to meet criteria. His doctors want him in Memory Care but he makes a few dollars too much on his SS and that disqualifies him for that type of care. He hasn’t worked in about 20 years and now that he needs this care he does not qualify for it. He is still at home and just last week started refusing to take his medication! Seems all legal bases have been covered but we are at a dead standstill for now. Just waiting. Unless he badly injures himself, me or a family member, he does not qualify for placement anywhere. Whats wrong with our system? You work hard all your life and try to live as good a life as you can, but then you find out only if you had lived in poverty you don’t get the help you need at the end of your life . Middle class does not qualify for any assistance in things like this.
Thanks for listening. “Stressed in N.C.”
Wow, Virginia. I am so sorry to hear about your situation. That’s so very punishing, and undeserved from every angle. I can’t comment on the US system, and suspect that each jurisdiction has somewhat different particulars. It’s so amazing, and tragic, that there seems to be no sensible solution.
> If I were you, I’d do three things: firstly, take all precautions for your own safety first. Even if he’s not exactly “psychotic” the article link below will hopefully give you some tips on what to do to keep yourself safe. That is paramount. Secondly, I’d post your situation to one of the big FaceBook support groups. I co-admin the two largest in the world, and can attest to the incredible knowledge and compassion of the group members, and some would likely have suggestions for you. Finally, I would keep advocating — I am sure that at some point, you’ll break through.
> Here’s the link — https://www.lewybodydementia.ca/stay-safe-lewy-body-dementia-psychotic-episode-dangers/
> Strength to you, Virginia — you are making a difference. Make sure you’re safe. Strength to you! Timothy Hudson
Is there any information or comment that is Canadian? I know the disease does not have a “nationality” but services and facilities and research do.
Hi Freddie: The only Canada-specific information I know of is what I have on this site. If there’s specific info you’re looking for, please let me know and I’ll see if there’s something I can help with.
Strength to you! Timothy Hudson
I am so grateful for finding this site. I am finding as a previous post said that we have no alternative if we aren’t dirt poor or just getting by. I filled applications for memory care facilities that said his (my husband’s) income isn’t enough for their facility. But it’s enough for grungy old dirty smelly looking places. He did not have to live like that at home. Why should he now?
I don’t know what I am going to do. He is 6′ 1′ and 215 pounds I am 5′ and 135 pounds. I can’t get help and I just can’t do this anymore. He is too far gone and I can’t handle him. This is such a roller coaster and makes me second guess my decisions. I am strong, I took care of my mother, she had senile dementia, piece of cake compared to this. She passed away in July 2019 and he was diagnosed with LBD two days after her funeral. I knew something was wrong but I did not know what it was. Symptoms are so different.
Wow. That’s a really hard bind to be in, Twilia. I’m sorry for you being stuck between a rock and a hard place. I don’t have any real suggestions, other than to keep looking at the alternatives. One must keep in mind that your own health has to be your #1 concern. I know this may sound trite or overly simplistic, but it’s true. Without that, his life will, essentially, be over. So if you’re unable to continue, placing him may be a better option than you may expect, since you’d be well enough to visit regularly, help with many things, and keep him the best he possibly can be.
I’m sorry for your dilemma, and know how wrenching it is when you expect, and have always believed there to be solutions that are acceptable, only to find that they are not.
May you find the missing link, and keep your own health and sanity, and continue to do the hero’s work you’re doing now.
Strength to you! Timothy Hudson
Just beginning the carer journey. Parkinson to LBD kickstarted by viral encephalopathy in a most brilliant man (1st programable calculator with H. Packard, satellite development with Stanford, PC with Steve Jobs, Silicon CEO, patent development, HIV universal test) I’ve ever had privilege of knowing. He taught me to lead with kindness in quest to contribute to the greater good.
So the journey is unique, given the LBD delusional effects on a brilliant mind guided by the principles of responsibility for making the world a better place – utilizing engineering, high tech, and powerful Silicon connections.
That’s quite a litany of incredible contributions he’s made — and I hope that the impact of those, and his connections in tech and engineering can impact his outcome. Whatever can be done could be a lasting legacy for others as well. To my mind, the most important contributions that could be made right now would be to improve visibility, awareness, and access to education and resources, so that as soon as one has a diagnosis, or suspicion of it, one could get things in place to make things the best they could be.
Here’s hoping some of that can happen, facilitated by this great fellow and his connections.
Strength to you both!
Timothy Hudson
My sister was diagnosed a year ago with LBD. Prior to that we went through a year with her on medications from being misdiagnosed as Bi-Polar with schizophrenic schemata. The anti-psychotic meds made her develop Parkinson-like symptoms after a few months and she stopped walking, eating, and lost the ability to swallow (all within a year). I finally found a hospital that just happened to have a specialist for dementia and my sister was taken off all anti-psychotic meds and got better for almost six months. Now the delusions have returned ( all of hers are auditory instead of visual) pretty much the same delusions that first started two years ago when we realized there was something very wrong. She is stubborn by nature and she has recently gotten to where I can’t handle her so I had to place her in assisted living (luckily at a place where family is near and can visit).
I just have a hard time imagining how she must feel as she must be wondering why she is there. She thinks there is nothing wrong with her.
Thank you for all of your information!
That’s a really tough situation you and your sister are in. I’m happy to hear she had a six month “reprieve” once the anti-psychotic meds were stopped, but her reverting to the delusions and hallucinations is, sadly, consistent with many people’s experience with the condition. And it’s fluctuations like that that make it so very challenging for all involved.
She’s lucky to have you as such a tenacious advocate!
Strength to you.
Timothy Hudson
Hi there!
Forgive me if this is not the right place to ask these questions… but I’m just looking for answers right now.
My mom is in her late 60s and over the last month has had an instant on set of intense auditory hallucinations that have turned into some pretty steadfast delusions. She’s always been an anxious and paranoid person but due to her weakened state those characteristics have been dialed to 11. Because of the speed of onset of her symptoms, her acing of the mini-cognitive test and the lacking of other symptoms, none of the doctors believes it’s dementia related.
Her psychiatrist has prescribed Respiridone and it’s definitely seemed to dampen the voices but she still is holding strong to a few delusions… does this sound familiar? Does your sister have many other symptoms coupled with her auditory hallucinations? In the early stages? We’re the auditory hallucinations the first thing to appear?
I’m sorry I’m just looking for any answers right now.
Auditory hallucinations and delusions related to them often occur early in the process, Andrew. I suspect that in many cases, they’re more common, but benign, or not noticed by others, so go undetected for longer than visual hallucinations — it’s not uncommon for another person to accept they didn’t hear something another person says they did, than to accept what another person said they saw.
Hoping the treatments get finessed, and your mom stabilizes.
Strength to you. Timothy Hudson
Hello: I used to be part of a wonderful family with children that I am so proud of.
I then was diagnosed with Lewy body dementia years ago, but the symptoms have been mild until the last couple of years where I have managed to get everyone around me and have roles in my life to stay away, and not want to be around me.
The thing is I do not blame them. I am trying so hard, and it is so difficult for me to be sensitive at times to my children’s needs. Thank God my husband has not abandoned me, he is a wonderful partner of going on 51 years.
I am so upset about this I get myself into hot water all the time and then it is okay for a few days and then back in the negative field again. My children are all grown with children in their teens and I can be so insensitive at times but again I am trying so hard.
I get on rants and go after whoever is in my line of fire at times. I was a kind, nice person (even if I do say so myself lol) but now I hurt both my daughter’s feelings and my son’s as well who has also stuck with my and always had my back. It is just moods I get into terrible moods and then good moods it fluctuates back and forth.
I have a wonderful Neurologist at Sunnybrook that helps me and I think still likes me.
This sounds so child-like and petty, however it is not like that at all: my heart is breaking over this and I do not know what to do and am wondering if anyone else has had this experience? I know it does happen to some people but do not understand why this is happening to me.
I have always been a quiet person and love my children and my husband sooo much and am afraid with my negative behaviour will drive them all the way.
I am lucky that I still have the ability to communicate but scared about when I cannot. I am good to my husband but there are times when I might sound nasty or have an argument with but I believe this is normal in anyone’s marriage??
Anyway forgive me for venting more than anything i would like my children to understand what it is like to have hallucinations all the time and hear things. I am stooping forward now and that is the Parkinson’s aspect.
If anyone can help me or have the same problems please let me know or share with me.
I never go out of the house and my husband does not like to go either so that suits both of us.
Please help me with any advice that would help me.
Thank you in advance for any input you can send me.
Your description is not uncommon for what many experience who have LBD. I think the best thing would be for you to join the online support group for those with LBD, that’s run by the US LBD Association. https://www.facebook.com/groups/LBDALivingwithLewy
It sounds like you live in Toronto, and if so, there used to be an in-person support group for LBD caregivers that your family might benefit from as well — you can contact the Alzheimer’s Association to find out more — https://alz.to/dementia-support-services/support-groups/
Strength and courage to you, and to your family. It’s a hard road.
Timothy Hudson