My dad was diagnosed with LBD. I have NO idea where we’re headed.

Hi there
I started reading your post “newest first” and saw that one of the first replies suggested JeanneGibbs posts on this site. Jeanne has over 14,000 posts so I thought I would suggest you search by her husband’s name which is Coy.
I did this and found many helpful posts. I am going to include one because it gives a run down of many of the resources she utilized and to encourage you to look for more of her inspiring posts.

I would also recommend that you read the book “Being Mortal, Medicine and what matters in the end” by Atul Gawande.
Jeanne’s post follows:

“I have now been a widow for a year. I miss my husband,Coy, of course, and expect that will always be true on some level.
I don't miss making decisions for another adult, I don't miss having plans disrupted at the last minute, I don't miss managing a complicated medicine regimen, I don't miss dealing with sleepless nights, or incontinence. I don't miss worrying and worrying and worrying. It is a relief to be free of many aspects of caregiving.
In the last month or so I have started missing other aspects of caregiving, namely the people I had contact with in that role. I miss visits and email correspondence with his wonderful dementia specialist at the Mayo Clinic, and ongoing contact with his awesome sleep specialist. Both of these researchers are compassionate, caring people. I also miss his local geriatrician. I miss the kind people at the adult day health program, especially the social worker and the nurse. I miss the generous lady who picked Coy up for bowling, and the people in the golf program for people with handicaps. And I think often of the wonderful young personal care attendant who helped me so much in the last months. These people all became a part of my life because they were a part of Coy's. I miss them.
I don't miss the people from my LBD caregivers' support group, because I have continued to be a part of it.
I expected to miss Coy. I expected to feel some relief. I just never thought about missing other aspects of those 10 years I was Coy's caregiver. I am grateful to a large number of people, and I miss them now that I have room in my emotional life to think about it.”

Thank you. Dad has LBD and vascular dementia along with clinical depression. He’s pretty angry as he understands the diagnoses - very unpleasant to be around right now. My siblings know nothing but even if they did, theyd be MIA. My honey is gone during the week and our son is in grad school so it’s just me for now. I’ve set up home care for the future but right now, the only saving grace is that his in law apt will be completed in 3 weeks. We both need a physical break from each other. Recently, he lashed out verbally and said things I will carry in my heart but despite the hurt he caused, I cannot imagine what he’s going through internally. It’s a difficult path he is on 😢

Met with dads neurologist after neurologist psych testing. Confirmed LBD and vascular dementia. It was hard for Dad to hear but the neurologist was amazingly compassionate and took his time explaining things to Dad. Dads agreed to try a couple of meds! The doc explained the path I’m on to both of us as well as privately to me. While Dad is not ready to discuss his diagnosis with other family members, the support I have found here and through another group on FB has been life changing! I’ve stopped reacting so much to Dads moods - I came to terms with my own grief regarding the future. There are rough rough roads ahead but will do my best to get him through it ❤️

Good morning.
I am really sorry to hear about the diagnosis of LBD in your dad.
My mom was diagnosed with LBD about 7 years ago however we lost her three years ago. She was my rock and my best friend. Now I am lost without her.
When she was diagnosed they really didn’t know much about this disease. Unfortunately they said that my mom didn’t have very long but she hung in there for a while.
I my opinion since you were a caregiver you know how to take care of elderly people. I am in the medical field as well which actually makes it harder bc you know more and you know what the doctor is talking about.
The very first thing you need to think about is trying to find therapy for you, and your family and your dad if he wants to. You can talk to a therapist about anything. They make a very good ear. This is what I did. To be honest with you I am still going. It seems to help me keep my life in check. Support is a must right now. Look on line. Facebook, churches sometimes have different support groups going on.
Next idk if you plan to keep your dad at home but if you do think about Homecare coming in to help you and your dad. This will help give you piece of mind for a little while so you don’t have to worry about anything while you are trying work or get to the grocery store or even get a shower. He definitely qualifies for help.
My husband and I took care of my mom so did my dad. No one else would. I think they were scared of what they were see. Thank goodness for my husband I don’t know what I would have done without him.
You are going to experience a bunch of different emotions through out this battle and afterwards. This is why I was saying you should start therapy. I know some people don’t like talking to other people about their own problems ( I am one of them) but I put my pride aside and went.
There is so much that they don’t know about this disease. At least you lucked bc their is a little more information now.
I will tell you that your dad is going to have a bunch of different mood swings, hallucinations and sometimes maybe very hard to deal with. Plus a variety of different things. My mom had every one of the symptoms plus some I believe. She was very difficult and confused a lot of the time she had hallucinations which made her combative. She also fell a lot. Plus so much more.
I was also able to find support in a local church nearby that meet once a month. However what helped me to sort out how I felt about everything was my therapist.
I understand that you were a caregiver so you have seen this from a different aspect but when it happens to a family member it’s completely different. Completely. It’s scary to see your parent this way.
Do anything you can to get help. Homecare/ hospice ( he may not quite be ready for this yet)
Remember you are important too. So is the rest of your family.
I wish you ALL the best. Take each day as it is given. Be thankful for everyday that you have with him. As they are precious. Just remember that this is not his fault. It’s not anyone’s fault.
Remember to take care of yourself so you can be there for your dad.
Lots of prayers dand hugs coming your way.✨🙏🏻

I have trouble with keeping my emotions in check too. You are not alone.
So much is going on inside of us. Fear, rage, anxiety, self pity, resentments, faith issues, all of it and more.
I make sure that before my feet hit the floor , I have a mantra , of internal dialogue, and it is a script for my emotional body.
"I am patient, I am in control of my self, I am patient, I am tolerant, I am forgiving, I am in control of me."
I say this outloud or silently, especially while dealing with any bad behaviors.
We can fake all of this until we make it. White lies are the glue that keeps us sane. "Okay" is a great response to just about anything. Keeping a journal of feelings and details is good too.
It is okay-no problem, no biggy...all the new language of tolerance. Tone is vital. Time outs are vital, and do not drink prior to dealing with this. Curb the coffee. Use 1/2 caff., Stick with teas and many green teas are healthy.

My dad has been diagnosed with LBD and I have found tremendous support/help to my many questions from Lewybodydementia.ca as well as lbda.org. Super packed with info and great access to caregiver support. I have learned SO much from others going through the same struggles and posing the same questions and concerns as me. LBD is quite a bit different than other dementias esp in regards to treatment/meds. Highly suggest those two sites in particular. Good luck, and strength.

I do hope those resources don't run out. They unfortunately may unless he's very well off.

i Just lost my Mom a yeah and a half ago - post op stroke. It was horrible watching her slowly give up. She was then diagnosed with Vascular dementia; she was gone within the month. 😢 I haven’t healed from her loss yet.

My brilliant Mom had LBD and her “journey” (grew to hate that word) was about 4 years. She had aggressive Parkinson’s and I knew she also had LBD but that was never officially diagnosed. Autopsy confirmed it because as a family we needed answers to the baffling behaviors. Exelon helped tremendously for 2+ years. It was like night and day. Support groups on Facebook have been very helpful to me. A few are: Our Journey with Lewy Body Dementia; Forget Me Not Lewy Body Dementia; Dementia through daughters eyes; and Molly’s Movement. Request to join and your posts will be seen by members only.

I'm going to include a quote from the Lewy Body Dementia Association (https://www.lbda.org/go/diagnosis-0) (BTW you might find their website useful)


"No cure or definitive treatment for Lewy body dementia has been discovered as yet. The disease has an average duration of 5 to 7 years. It is possible, though, for the time span to be anywhere from 2 to 20 years, depending on several factors, including the person's overall health, age and severity of symptoms."

I think you need to prepare yourself for the possibility that your father could live significantly longer than a couple of years and need significantly more care than you are prepared to give. I'm not saying you can't look after him at home, just be prepared with a Plan B.

Baresenault that was rather a rash promise to make. It is likely to come into conflict with reality, I'm afraid.

Unless your father has the funds to hire in comprehensive skilled nursing care, that is. Has he?

How can one get their emotions "in check" at such an emotional time? Everyone is upset. While the honesty can be helpful, the "staging", the predictions of how much time is left...I'm not sure is. LBD is different from the others but still from what I've learned from a friend whose husband has it, it is still taking it one day at a time. While your father still has capacity to do so it will be wise to consult with an elder law attorney and get legalities, POA etc tended to so you are sure to be able to understand his wishes and he can take comfort in that. Call your Area Agency on Aging to learn what resources are available. And if there is no support group...although it will take energy you may not have, maybe you could be instrumental in starting one. Although having a professional facilitator with experience is nice, much of what I learn is from those that have or are going through it. The neurologists office may be a starting off point, maybe a nurse or PA? Take care...

Get your family affairs in order, estate, wills, etc. When it gets real bad you may want to consider hospice; I presume he is already in a nursing home. If you have not done so already, consider making him a "Do Not Resuscitate" with each hospital admission. If he is not DNR now the nursing home will call 911 if something happens and get full treatment including intubation and shock/CPR. You also may want to get a pre-paid funeral; cremation is the most affordable means. this is to prepare you and when he does pass you will be spared having to find a funeral home. I'm taking care of my mom with end-stage Alzheimer's so I have to deal with the reality of it and it's not easy. you just have to take each day as it comes and deal with it.

Have you looked on this site? If you click on Care Topics at the top RHS of the screen, you will get an alphabetical list of subjects. Scroll down to L, and there are articles, questions and discussions about Lewy Body Dementia. A good place to start! Best wishes for a journey that is bound to be difficult.

So sorry for your sad news. I'm an only child care managing for my dad, who is 4 months shy of 96, and diagnosed with LBD and Parkinsonism. It took 8 years from the noticeable onset of mild cognitive impairment and other behaviors, including OCD and addictions, before he was able to be definitively diagnosed, after suffering seizures two years ago. My care journey stands at nine years.

My dad is on Lamotrigine to manage his seizures, which also has a mood-stabilizing effect and is used to treat mental health issues in others. It was recently increased by his neurologist to address his increased agitation, which included argumentative behaviors. This is a typical progression in LBD and should be managed by his doctor as it can escalate into physical aggression. A documented history of physical aggression can cause him to be rejected from care facilities when the time comes. This is one symptom you must be in communication with his doctors about to keep his care options open for the future.

My dad's memory struggles and word-finding issues were greatly helped by the lowest dose of Donepezil (AKA Aricept). He is not yet on a Parkinson's drug but is beginning to show increased difficulty in moving. You should know that LBD often occurs along with Parkinsonism so you will want to be alert to any physical difficulties he mentions. The best thing you can do for him is make sure he is under the care of a good neurologist who is there to help you help him.

At some point he will require care by someone other than you. I have my dad in a Board & Care for high care needs people but it's still a home environment with five other residents and frequented by their congenial families. He can stay as long as his care requirements don't exceed what they are licensed to provide (no nursing) and his behavior isn't disruptive or potentially harmful to himself or others.

I'm sure this isn't what you wanted to hear but I appreciated my dad's doctor telling us that this was going to be a very rough road. He didn't sugarcoat it and, in fact, said that he would be fortunate to die of a medical event before he lives into the fullness of his disease. For that reason, my dad, his doctor, and I have agreed to respond to a medical issue by having him transported to ER for evaluation. Once the problem has been determined, the decision about his treatment will be guided by his wishes not to have invasive or aggressive treatment or a long stay in rehabilitation or nursing care. If treatment such as IV antibiotics, fluids, oxygen, monitoring, and physical therapy can't restore him to his current quality of life, then he wishes to forgo treatment, go on Hospice and allow nature to take its course.

Having said that, my dad's quality of life is still acceptable to him. He's able to play chess at the Senior Center and with friends, he still enjoys crossword puzzles, he's a cable news junkie because of his background in history and political science, he still likes to go out to eat, he enjoys rides to sightsee during the seasons, and we still go to places he used to enjoy when he's able. It's when he can't do those things that he has no interest in being "extended."

I'm afraid I don't have a formula for "handling" the emotions of this journey. I'm baited and take the bait when I don't intend to. I'm hurt and upset when he takes his frustration out on me after I have worked myself to exhaustion. I'm angry and resentful at how much of my life has evaporated over the years. I've worried through the night while I tried to figure out what the next step needs to be to address a new medical or cognitive or financial issue. Still, there are times with LBD where they are on a plateau, which can last for weeks, months, or years. The sooner you can find the new "normal" and craft a routine around it for you and your dad, the better for you both. You will need to be creative to keep him engaged in things he can derive enjoyment from. Blessing

My mom had Lewy. One of the more frustrating aspects was that almost everthing on Dementia in the US is all about Alzheimer’s. Lewy is a very very different creature for both medication management and how the progression is for the beginning & mid stages. From time of mom’s DX to death was about 7 years but she had a full blown geriatric workup 3 yrs prior so had a pretty solid baseline for when changes were starting to be definable. Lewy is the second most diagnosed Dementia btw.

I found the UK Lewy sites to be most helpful. Even going on their forums. Across the pond really means just hours away or your connecting with folks who are online when their household is all asleep and it’s daytime here. One of ACs main regular posters is in the UK.

-so did dad get put on Excelon? Patch or pill?
- did his docs review all his other meds? Some behavioral meds are counterindicated totally for Lewy, so what drugs he’s on is important.
- Is he hallucinating? Like animals?
- a specific paranoia threat? Like the mail carrier, or recycle guy?
- Does he have the Lewy “shuffle”?
- Has he commented on surfaces.... like flooring looks odd, or you notice issues when he has to transition like from sidewalk to pavement, or kitchen floor to carpeting?
- has he said anything about light or lighting?
- does he have something he can do or does that’s real OCD type of project?

In my experience Lewy can be super hard as they often appear totally competent and cognitive, so others expect them to be ok but old. They can get up, get dresssed on their own, even coordinating clothes so they look pulled together color & patternwise, potty and hygiene, but beyond the usual 3-5 minute conversation they are on another solar system. With Alz., their on another planet from the start of the day.
- Lewy seem to stay cognitive lots longer so you can do outings and things with them but they imo can sense their losing grip on reality and lash out when a realization event hits them. My mom would have episodes, which I think would correspond to a chunk of plaque falling off in which she would be very confused for a day or so, then she’d be just all fine again. As she aged the episodes became more frequent and she had several TIAs last 2 years.

Have you been to lbda.org?

Were there any less specialist support groups available? I think once you've got your head around the specifics of a particular condition, the real benefit of a support group is comradeship - I'm not sure how exactly matched your experiences have to be for it to matter.

As in teaching, paediatrics, surgery, law, any profession you care to name - when it's personal, it's different. Do not demand the same standards of yourself at home, dealing with your father's illness, that you took pride in at work. This time you are a daughter, and it's your Dad, and it's nothing like the same.

Search the AgingCare forum for a lady called JeanneGibbs, whose husband had LBD. She cared for him at home until it became unsafe and unfeasible, and her answers have supported many people through difficult moments.

My my mother was diagnosed with Lewy bodies she would have doubts of rage and anger at times my understanding is that that is typical it's normal the decline is not like other dementias where it is a slow steady predictable decline is very choppy and sometimes she would have really really bad days weeks months and then other times she'd be still able to drive it just was very back and forth and very confusing for her and for me bless you

I'm so sorry to see this news about your father. No wonder you are heartbroken. I hope you can find some support system. Even online support is good. I'd read a lot about this condition, so you can plan and have some options for his care as he progresses. Prognosis may or may not be accurate. My LO has Vascular Dementia and that expected life expectancy is 4 years, but, she is now in MC for 5 years. (Now on Hospice.) I learned to expect nothing, because, there have been so many ups and downs. I hope you have someone to help you. You'll need respite time.