Mom has been progressing with hallucinations and not sleeping at night as well as a bit of incontinence. I just want to know how long this will go on. If I place her in a facility the money will run out and they say it could last 10 years?
The most definite way we knew Dad has Lewy Body is his hallucinations - I don't believe any other form of dementia includes hallucinations. It could include other symptoms as well.
It doesn’t matter which it is or how long she will live. Your mother needs to be placed now . Place her. Then a few months before her money runs out apply for Medicaid for her. Do NOT use your own money . Sell your mother’s house for her care.
It is possible to have more than 1 type of dementia at the same time. Personally I never bothered to have my Husband tested for Vascular dementia although I strongly suspected it along with the Alzheimer's he was diagnosed with. What is VERY important with Lewy Body dementia is an accurate diagnosis. the reason is there are medications that are typically prescribed to people with dementia that a person with LBD should NOT take. If the doctor is sure that mom has LBD I would go with that diagnosis. You can ask if there is also a possibility that she has Vascular dementia as well. With Vascular dementia the declines are rapid and a person can go from being able to do something one day to literally over night not being able to do that task. Hallucinations are common with LBD. Violence is also common with LBD. (mainly due to paranoia.)
It might be worth looking into a facility that accepts Medicaid. many places will prefer that a resident be private pay for 2 or 3 years before Medicaid kicks in.
You do not mention how old your mom is. Or other medical problems but if you can not care for her at home, and this is not going to be an easy task. Placing her where she will get the care she needs would be priority. Worry about Medicaid as that time approaches.
LewyBody Dementia can be diagnosed with a CAT scan because the brain legions will be visible on it.
As much as some RN's think they're a medical doctors, they're not. Go with the diagnosis your mother's doctor has determined.
There's no wya to tell how long it can go on. I had clients with Lewy Body Dementia who were totally invalid, non-verbal, and bedbound at home for nearly four years before the passed on. So you can't tell.
Put your mother in a nursing home/memory care now. You dont pay for it, she does. Her real estate and assets go towards her care bill not your assets.
No, Burnt. Lewy's doesn't ALWAYS show up on cat scan or MRI. This from online: "MRI is the modality of choice to structurally image the brain, however, there are no easily identifiable features to specifically support the diagnosis of dementia with Lewy bodies. In contrast, functional imaging with SPECT/PET is in many ways more useful. Unfortunately, the literature is replete with studies showing … See more" I was specifically told by the neurologist that my brother's did NOT show up on MRI/cat scan and that he was diagnosed with "Probable Early Lewy's Dementia" ONLY by the symptoms. He, unfortunately had them ALL. Swallow deficit occasionally, hallucinations, exp with presence of complicated patterns such as hotel carpets or marbling, poor balance, loss of taste and smell, foot tappings that came and went quickly, and etc. I could go on.
Vascular dementia is a form of dementia caused by a lower flow of blood through the vessels of the brain, Roger. And that can be due to Lewy's Body Dementia in which deposits cause this sort of obstruction in flow (or other dementias that deposit plaques).
Often dementias show up similarly on MRIs, and it is then further diagnosed by symptoms (in Lewy's and Parkinson's often problems of balance and hallucinations, loss of smell for Lewy's, difficulty swallowing, hallucinations, and etc.)
Most Neuro/psyc docs will tell you that they can give you more exacting information after death if autopsy of brain is done. But the truth is that we are on the cusp now only of learning about how dementias differ, how many types there are. When I first started in nursing it was ALL "senility". Not much else to be said. The same can be said of mental disorders and their variety.
In a sense the doc and the RN are both right. But the Doctor has combed it out further to a more "finely deliniated" diagnosis. My brother's Lewy's was diagnosed almost ENTIRELY by his symptoms. And he was said to have "probable early Lewy's Dementia" as a diagnosis. The NIH.gov has a pretty good Lewy's primer; you're perhaps already familiar with it.
Like already said, a person can have more than one type of dementia. However, hallucinations are often more associated with Lewy Body dementia. My late husband had vascular dementia and never had any hallucinations. The life expectancy with Lewy Body is 5-7 years and vascular dementia just 5 years. But know that those are averages, not exact. My late husband was diagnosed with vascular dementia in 2018 and he died in 2020. If the money runs out after your mom is placed you'll just have to apply for Medicaid for her. Better to get her placed now so she has time to adjust to her new surroundings and to the people before she gets too bad off. That will definitely make things harder.
Lewy body dementia lasts an average of 5-8 years, and vascular dementia around 5 years. Here's what you do....you place mom in a MemoryCare Assisted Living home until about 6 months before her money runs out. Before then, if she's still alive, you have a Medicaid Skilled Nursing care facility in mind for her to move into, with a Medicaid application filled out. 6 months or so before moms money runs out, you get her into the SNF with PRIVATE PAY, Medicaid pending. There's a much better chance of the SNF "having a room available for her" with PRIVATE PAY immediately. Then when Medicaid is approved, you're all set. You do not pay with your retirement money. See an elder care attorney for guidance, which is what I did with my folks. I was the only child and had POA for both of them. The elder care attorney was a free consultation and VERY useful.
My mother wound up passing away about 6 months before her funds ran out, as it turned out, in her Memory Care Assisted Living suite on hospice. I was relieved I didn't have to get her into the SNF after all. She had vascular dementia for about 6 years before she passed.
Nobody but God knows when our loved one will pass. All we can do is plan accordingly for keeping them as comfortable as possible using their own funds until they run out, and the relying on the government to help.
Im not worried about time just money and financial situations. I'm just concerned that if I place her she could live another 10 years and money will run out. I guess I just take the chance. I know it sounds horrible but she is in so much pain and aggravation that I know I need to place her but am scared I will have to use my retirement money to help her.
It doesn’t matter which it is or how long she will live.
Your mother needs to be placed now . Place her. Then a few months before her money runs out apply for Medicaid for her.
Do NOT use your own money . Sell your mother’s house for her care.
Personally I never bothered to have my Husband tested for Vascular dementia although I strongly suspected it along with the Alzheimer's he was diagnosed with.
What is VERY important with Lewy Body dementia is an accurate diagnosis. the reason is there are medications that are typically prescribed to people with dementia that a person with LBD should NOT take.
If the doctor is sure that mom has LBD I would go with that diagnosis. You can ask if there is also a possibility that she has Vascular dementia as well.
With Vascular dementia the declines are rapid and a person can go from being able to do something one day to literally over night not being able to do that task.
Hallucinations are common with LBD.
Violence is also common with LBD. (mainly due to paranoia.)
It might be worth looking into a facility that accepts Medicaid. many places will prefer that a resident be private pay for 2 or 3 years before Medicaid kicks in.
You do not mention how old your mom is. Or other medical problems but if you can not care for her at home, and this is not going to be an easy task. Placing her where she will get the care she needs would be priority. Worry about Medicaid as that time approaches.
As much as some RN's think they're a medical doctors, they're not. Go with the diagnosis your mother's doctor has determined.
There's no wya to tell how long it can go on. I had clients with Lewy Body Dementia who were totally invalid, non-verbal, and bedbound at home for nearly four years before the passed on. So you can't tell.
Put your mother in a nursing home/memory care now. You dont pay for it, she does. Her real estate and assets go towards her care bill not your assets.
"MRI is the modality of choice to structurally image the brain, however, there are no easily identifiable features to specifically support the diagnosis of dementia with Lewy bodies. In contrast, functional imaging with SPECT/PET is in many ways more useful. Unfortunately, the literature is replete with studies showing … See more"
I was specifically told by the neurologist that my brother's did NOT show up on MRI/cat scan and that he was diagnosed with "Probable Early Lewy's Dementia" ONLY by the symptoms. He, unfortunately had them ALL. Swallow deficit occasionally, hallucinations, exp with presence of complicated patterns such as hotel carpets or marbling, poor balance, loss of taste and smell, foot tappings that came and went quickly, and etc. I could go on.
Often dementias show up similarly on MRIs, and it is then further diagnosed by symptoms (in Lewy's and Parkinson's often problems of balance and hallucinations, loss of smell for Lewy's, difficulty swallowing, hallucinations, and etc.)
Most Neuro/psyc docs will tell you that they can give you more exacting information after death if autopsy of brain is done. But the truth is that we are on the cusp now only of learning about how dementias differ, how many types there are. When I first started in nursing it was ALL "senility". Not much else to be said. The same can be said of mental disorders and their variety.
In a sense the doc and the RN are both right. But the Doctor has combed it out further to a more "finely deliniated" diagnosis.
My brother's Lewy's was diagnosed almost ENTIRELY by his symptoms. And he was said to have "probable early Lewy's Dementia" as a diagnosis.
The NIH.gov has a pretty good Lewy's primer; you're perhaps already familiar with it.
However, hallucinations are often more associated with Lewy Body dementia.
My late husband had vascular dementia and never had any hallucinations.
The life expectancy with Lewy Body is 5-7 years and vascular dementia just 5 years. But know that those are averages, not exact.
My late husband was diagnosed with vascular dementia in 2018 and he died in 2020.
If the money runs out after your mom is placed you'll just have to apply for Medicaid for her.
Better to get her placed now so she has time to adjust to her new surroundings and to the people before she gets too bad off. That will definitely make things harder.
My mother wound up passing away about 6 months before her funds ran out, as it turned out, in her Memory Care Assisted Living suite on hospice. I was relieved I didn't have to get her into the SNF after all. She had vascular dementia for about 6 years before she passed.
Nobody but God knows when our loved one will pass. All we can do is plan accordingly for keeping them as comfortable as possible using their own funds until they run out, and the relying on the government to help.
Good luck to you.
Get her approved for medicaid if she doesn't have the money for care and go back to being her adult child and advocate.
It's not uncommon for someone to have 2 forms of dementia.
But I am glad your getting somewheres as for a diagnosis