There is a LBD association that has a Facebook support group. It provides excellent support. My mom has LBD and trying to be her sole caretaker is destroying me and my own future. As a recent immigrant to the US and limited funds, she can't access benefits available to US citizens so it's all on me to provide her care. I wish you well.
Faith, I read your update below. I am so glad you have researched, and it sounds like you are well informed indeed. My brother died of sepsis before his "probable early Lewy's Dementia" could be so serious as to send him into the latter stages. It started with some balance issues, but doctors said that could be the Lewy's OR the benign long-standing tumor, long calcified, near his lower brain motor regions. He had loss of taste and smell, again, an either or thing. Then he had the hallucinations, and I would say that was the thing that let us know this was Lewy's. Some of the hallucinations were very very real, a whole story. He would see, say, a garden party around the pool (he didn't have) with one good looking fellow in white shorts with a haircut like Elvis, black and slicked back. Or he would see an immigrant woman huddled in the corner of his room, sheltering her child, so real that he reached out to comfort her and poof, she was gone. He had some foot tapping and some swallow issues, particularly with water that would come and go. He had some hallucinations that would come on from seeing something with patterns such as a hotel carpet or marbling on the walls in a public washroom. He could speak of seeing things differently in the distance, and we would sit and talk about it. He moved after selling his home and making me his POA and Trustee to an ALF. He had been diagnosed after a car accident and he said he had clues something was wrong. Would think his phone would stop working and he could hear, then not, then could hear ago while the phone company kept wagging their heads saying "Nothing is wrong with this phone". Given his complete descriptions to docs in hospital after his accident they diagnosed him, and he said while he was afraid of what was coming he was glad to know why his world looked so different. Like you, he noted symptoms being better and worse, and any anxiety would bring them on pretty bad. Not much else I can tell you. He died only two years after diagnosis, so he never had to descend into full blown dementia, which was his most fervent wish. I sure wish you good luck. There are a few Facebook sites to explore if you do FB. My best out to you.
Faith, you mention eating problems. Those are likely not directly related to the symptoms of Lewy's though some intermitant swallow problems can be common. Will you tell us please when your Father was diagnosed with Lewy's? What symptoms is he currently having? Have you, yourself, gone online to look up Lewy's dementia at all? It is important for you to know that, with ANY type of dementia, what we see with our own loved one will not necessarily be what YOU yourself see with your diagnosed love one. Tell us a bit about what your Dad is experiencing and what you are seeing. What specific problems do you currently have with Dad? Are you his caregiver? Are you his medical and financial POA? A place to begin your research: Go to the DementiaSocietyofAmerica.org. It will give you definitions and symptoms of different dementias.
I have done so much reading on the Internet about this dementia for at least 2 years. My dad doesn't have eating problems. He eats small stuff. He has the swallowing thing (spitting food back out and clearing his throat noise). They did an exam about a year ago for his throat but nothing needed to be done. At first they mentioned stretching but that was not needed. My dad has delusions/hallucinations occassionally. He had his first one over 5 years ago. Then he started shuffling his feet sometimes and he walks with his back bent over. There were times he told my mom somebody was crawling on the floor at nighttime, etc. She told him to stop telling me these things that were happening, because she didn't understand dementia at all. I would find him staring when he was laying down. He is showing all of the autonomic dysfunctions now. His body looks terrible (almost all of his bones can be seen in his body). I even call the Lewy Body resource number 2 years ago. She told me my dad was in the middle stage of this dementia. My dad's doctor was the one who told me dad's symptoms were those of Lewy Body dementia. I am constantly reading things on the internet and know that everyone's symptoms are not always the same. I was just trying to talk to someone, because I can't find any support groups that meet in person.
How long and what stage? My dad lost about 10 lbs back in August. He seems like he's losing about 10 lbs a year. His weight fluctuates between 107-110 since August. I think his symptoms have progressed, because now he has issues with his blood pressure, perspiration (complains he's hot but he's not), etc. Just trying to get an idea what stage he's in. He's been in hospice for several months.
My mom has LBD and trying to be her sole caretaker is destroying me and my own future. As a recent immigrant to the US and limited funds, she can't access benefits available to US citizens so it's all on me to provide her care. I wish you well.
My brother died of sepsis before his "probable early Lewy's Dementia" could be so serious as to send him into the latter stages. It started with some balance issues, but doctors said that could be the Lewy's OR the benign long-standing tumor, long calcified, near his lower brain motor regions. He had loss of taste and smell, again, an either or thing. Then he had the hallucinations, and I would say that was the thing that let us know this was Lewy's. Some of the hallucinations were very very real, a whole story. He would see, say, a garden party around the pool (he didn't have) with one good looking fellow in white shorts with a haircut like Elvis, black and slicked back. Or he would see an immigrant woman huddled in the corner of his room, sheltering her child, so real that he reached out to comfort her and poof, she was gone. He had some foot tapping and some swallow issues, particularly with water that would come and go. He had some hallucinations that would come on from seeing something with patterns such as a hotel carpet or marbling on the walls in a public washroom. He could speak of seeing things differently in the distance, and we would sit and talk about it. He moved after selling his home and making me his POA and Trustee to an ALF. He had been diagnosed after a car accident and he said he had clues something was wrong. Would think his phone would stop working and he could hear, then not, then could hear ago while the phone company kept wagging their heads saying "Nothing is wrong with this phone". Given his complete descriptions to docs in hospital after his accident they diagnosed him, and he said while he was afraid of what was coming he was glad to know why his world looked so different.
Like you, he noted symptoms being better and worse, and any anxiety would bring them on pretty bad.
Not much else I can tell you. He died only two years after diagnosis, so he never had to descend into full blown dementia, which was his most fervent wish.
I sure wish you good luck.
There are a few Facebook sites to explore if you do FB.
My best out to you.
Will you tell us please when your Father was diagnosed with Lewy's? What symptoms is he currently having?
Have you, yourself, gone online to look up Lewy's dementia at all?
It is important for you to know that, with ANY type of dementia, what we see with our own loved one will not necessarily be what YOU yourself see with your diagnosed love one.
Tell us a bit about what your Dad is experiencing and what you are seeing. What specific problems do you currently have with Dad? Are you his caregiver? Are you his medical and financial POA?
A place to begin your research:
Go to the DementiaSocietyofAmerica.org. It will give you definitions and symptoms of different dementias.