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My LO’s personality seems to be changing since Easter. I know that LBD symptoms can vary from patient to patient but there must be some info to help me figure out where we are and what I can anticipate? I don’t really even understand how my LO will lose his battle with LBD If he doesn’t have a significant fall or a stroke. There are no support groups in my area and I’m feeling lost and a little scared. I need a resource that calls it like it is vs being sympathetically vague. The neurologist gave my LO 2 yrs and we’re approaching the one year mark. Any help is greatly appreciated!!!! As always, thank you!!

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My mom had this and sometime in the next months, your loved one will want to stop eating and drinking, because they can no longer swallow. Their brain can no longer control those muscles. Then it's time to let go. Putting them on tube feeding is just prolonging the inevitable. Hospice will step in at your request and make them comfortable until the end. Get prepared with DNR and poa for medical if you haven't already got these measures in place. Having lost my mom and brother to Alzheimer and now my dad has dementia and delusions, I have lived with this awful disease in my family for over 20 years.
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Barsenault60 May 8, 2019
I’m so sorry you’ve had to deal with these issues for so long. You’re incredibly strong to have survived two decades of this disease with your LOs!!!
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My husband has had LBD for 6 1/2 years. No one dies from LBD, they die WITH it. LBD is so cruel, as with all dementia, and there is no one pattern to go off of. I am his only caregiver, and at times I wonder when will all of this end. Then I remember that to have it end would also be the end of his life, and I dont want that. For the 1st 5 years I constantly read and wondered what to expect next, and there were no answers. Its painful to see him talk to the imaginary people out in the back yard or a cat scurrying across the floor. It's hard to keep taking him to the bathroom all day long; its hard just to get him up from a chair or even from bed. He is a big man, weighs 100 pounds more than me, so nothing is easy. We aren't poor enough to qualify for help. We are fortunate that we have some money set aside, but those funds will be eaten up by paid caregivers and then nursing home. These things are real for him. I don't have a support group in my area either. I've been told to attend an alzheimer support group, which I've done, but it's just not the same. I hope you have family members who can help you. Good luck to you.
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Barsenault60 May 8, 2019
I’m in the same place for the most part. I despise this disease because my LO intellectually understands what path he’s on but then checks out for a while. I get his BP under control and then his mood swings act up. I get the mood swings under control and the hallucinations act up! I have siblings but none of them wants confirmation of any kind, nor do they come around unless they need $. They are also embarrassed by his physical appearance so they no longer want to take he out in public (he won’t bathe). It hurts him that they don’t come around but I can’t fix it. Some days, I’d kill to be alone for a couple of hours. It feels like a waiting game sometimes - mostly for my LO. He’s waiting for the hammer to drop. Meanwhile, I’m trying to anticipate the next issue despite my LO resenting his needing me. We only have Alzheimer groups here which my neurologist said wouldn’t be much help so I haven’t bothered going. I miss my LO before the disease - I miss our talks, the stories, time on the boat, meeting for dinner etc. I hate what our relationship has become - the arguing, the attitude, the resistance, the silence at dinner, the thoughtlessness of his words. . . And yet he depends on me 1000% My son reminds me occasionally that some day I will miss this despite how frustrating it can be. I am not anxious for that day - I just wish there was a place to meet others in our situation to share info, bitch, laugh and get a hug from someone who knows exactly what we’re going through.
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I am so sorry that you are living with a diagnosis of LBD. My husband was diagnosed TEN years ago, and has now spent almost three years in continuing care. He sleeps a lot, does not always know me but has remained his usual pleasant gentle self. He has lost more than 60 pounds weight over the past 18 months.

Falls seem to be more common with LBD--it has a big impact on blood pressure levels--so I made sure my husband wore "hip protectors" 24 hours a day. I did not want him to die because of a fractured hip or femur.

I don't know what stages to follow, if there are any, other than "later" stage but I firmly believe that he is slowly starving to death, despite all interventions to increase his calorie intake. He does not appear to be in any distress and still enjoys a glass of wine! Make the most of what you have now and, as you will hear, time and time again on this wonderful forum, self care means that you can care for him for a longer period of time and still keep your sanity.
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Barsenault60 May 7, 2019
Thank you! ❤️
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I would take what your physician is telling you with a large measure of skepticism, in my experience LBD is not well understood in even the medical community except by those who deal with it extensively. Stages are problematic even when dealing with ALZ which the FAST scale was created for, I'll give you a link to a site which you may find helpful


http://www.lewybodydementia.ca/lewy-body-dementia-phases-and-stages/
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Barsenault60 May 7, 2019
Thank you so much!!! Huge help!!
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