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Dad was given a prognosis of 2-5 yrs but closer to 2. Dad's pissed. I’m pissed/heartbroken etc. Dad is adversarial most days - this is new for him - and I rise to the bait most times. Can’t find a LBD support group in my area and my husband is home only on the weekends. How do I get my emotions in check?!? (I used to provide senior care and was very good at it. Seeing it from this side is eye opening!)

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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.
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Barsenault60 Dec 7, 2018
Thank you so much for the tips!! I find that if I keep my emotions together, Dad is reactive and seems to keep it together as well - at least for now!!!
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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.
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Barsenault60 Nov 29, 2018
Thank you!!!
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I do hope those resources don't run out. They unfortunately may unless he's very well off.
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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.
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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.
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Barsenault60 Nov 28, 2018
Thank you SO much!!!
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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.
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Upstream Dec 7, 2018
Yes my dad's doctors started mentioning LBD and Parkinsons 3-5 years ago. Dad is still ambulatory and in a Memory Care facility. I am anticipating another 3-5 years to care for him. Luckily he bought LTC insurance back when the policies were stellar, so there are unlimited funds for his care. Just about the only things he can do for himself are walk (with a cane) and eat (very messy), he is losing his grip on the world but things like cardiovascular system are in tip top shape so odds are he has a while left. I am hopeful he dies of something before he ends up bedridden. Thankfully he never coerced me into promising something like "no nursing home". It's been tough enough as is. His memory care facility is really good and better than him sitting at home without stimulation. I'm glad I moved him when I did. No regrets.
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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?
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Barsenault60 Nov 27, 2018
While it may seem rash to someone else, it is my sincere hope to keep my promise. Without getting into the past, I’ve had to walk through emotional hell before. Dad has always hated nursing homes and luckily, there are resources to keep him home barring an unforeseen medical crisis.
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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...
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Barsenault60 Nov 28, 2018
I am in the process of getting a POA, lining up caregivers, Advance Directives, burial plot, having difficult discussions about funeral wishes etc (while he still can.) it’s difficult but I know needs to be done
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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.
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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.
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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
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Barsenault60 Nov 26, 2018
Thank you so much for your input! My dad has made me promise I will keep him home. He just added a separate residence connected to our house so that we both can have our space. My boss will let me work PT from home once needed and dad has the funds to get help in. I have seen the plateaus and dads neurologist indicated most LBD patients die from an event vs slow decline. Dads a retired radiologist so he’s refusing meds right now. He’s so angry right now and I don’t blame him! He lived with us 3 yrs ago after a significant fall and was such a pleasure for 7 mos. this version of him is not such a pleasure. Truth is, I miss my Dad (circa 3 yrs ago). I’ve committed to help get him through this but I’m scared. I have zero help from my 3 siblings who have all stuck their heads in the sand. Two are more concerned about the inheritance than seeing Dad. Very isolating for Dad and as well as me. Pondering ways to get him out to socialize. He’s never been very social and living alone for 13 yrs didn’t help.
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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.
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Countrymouse Nov 25, 2018
alz.org has a pretty good section on LBD. I only didn't mention them because they can be a bit "fund-raisery" and off-putting, but their website does cover all the different types of dementia in some detail.
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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.
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Barsenault60 Nov 27, 2018
Thank you!
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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
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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.
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