Anyone have experience with a loved one whom has probable Lewy Body Dementia?

Wanted some time to put my thoughts together before responding to you. So, here goes. My bride of 42 years was diagnosed with the demon LBD about four years ago; though our neurologist believes she's been suffering from it much longer. Keep in mind that a definitive diagnosis cannot be made without an autopsy; but a 'probable' diagnosis can be made by a reputable physician -- preferably a neurologist or geriatric specialist.

First time I noticed any issues with my wife was around 2017/2018...her short term memory was very suspect. I'd have to repeat something I said 30 minutes earlier, and then repeat it again over and over. She began getting more irritable, agitated, and frustrated. The good Lord knows I could understand that frustration; but when she started talking gibberish, I knew something was wrong. She couldn't formulate her thoughts into a sentence. This was only temporary, but it happened more than once. Went to her primary care doctor who, thankfully, was smart enough to recognize that the issue may be neurological and outside her wheelhouse.  

She provided us a referral to a neuropsychologist for some detailed cognitive testing. My wife tolerated the day-long testing well -- I was surprised how good she handled it. But, the results told a totally different story. She had serious cognitive impairment. The neuropsychologist immediately referred us to a neurologist at a university hospital. But, before we could get to that first appointment, the demon began releasing some of his soldiers. I'm talking paranoia, delusions, and hallucinations. She began accusing me of taking things from her, selling things out from under her, hiding things, etc. But, the worst was being accused of infidelity... that one cut hard. My wife then began hallucinating...different folks see or hear different things. For my wife, it was bugs. She saw them everywhere, even in her food. This caused a dramatic weight loss...heckuva diet, but I wouldn't recommend it. I lost count of the number of pest control companies I had come to our home to spray for those 'bugs'. But, if it made her feel better, I'd keep calling them.

Our first appointment with the neurologist followed CT scans, and an MRI. Dementia is not defined in x-rays, unfortunately. But, they are necessary. As a result of my wife's neuropsychological testing, CT and MRI, and a detailed assessment and examination by a very thorough neurologist, she was diagnosed with probable LBD with parkinsonian symptoms in 2019 (she often has tremors, and a very slow gait and overall slow movement). Our neurologist has worked very well with us to devise a solid plan to ensure my wife has a decent quality of life. This includes exercise, a good diet, positive activities, and the right kinds of medication. And, remember, the 'right' medication for one does not mean it will work for all.

I have to emphasize how important it is to work for 'quality' of life. This is a progressive, unrelenting disease. Until there's a cure, this demon will win . So, educate yourself on all things LBD...there's so many good resources available. The Lewy Body Dementia Resource Center and the Lewy Body Dementia Association are two of the best that I've found. Remember also that you will get tired...you will get frustrated...you will get angry...you will lose your patience. Give yourself some time so those feelings aren't projected onto your loved one. Their burden is already heavy enough.  

It is my joy and my honor to be not just my wife's caregiver, but also to remind her daily that I am still the man she married so many years ago and that she is still that very special lady I fell in love with. But, mainly I tell her -- and show her -- that I won't let go.

May God grant you and your mom peace and strength.

Yes, I have been exactly where you are. A month before my wife died, she remembered what she had for breakfast, and the color of the pills she took with her meal. That made it nice, I could tell her up to the day she lost consciousness that the did not have Alzheimer's. The problem was that she hallucinated so many things including an affair that I was having (only in her mind, not in reality.) She also hallucinated being transported by benevolent captors to Germany as a prisoner of war (in 2021!)

I, (and everyone else on this board) can share stories of being in your shoes.

A couple of pieces of advice.
A. Read all you can about dementia and caregiving. This will make what you are going through more understandable, not easier, but understandable. This message board is a good starting point.
B. Eventually, you will get frustrated with all the doctors and "helpers" in the medical business. You must be your mom's advocate, no one else will be. Again, this message board is a good starting point.
C. Caregiving is exhausting. You cannot do this alone. Get some help. Get started now. This is not like ordering something from Amazon. There are timelines, acceptance criteria, reservations etc.
D. On a related note, don't kill yourself keeping them alive. This is a terminal condition. You cannot change that.

I would be happy to speak with you personally about what you are going through. Reach out through this site and we can share information.

2 ladies in my local caregivers support groups husbands had Lewy Body dementia, and you are correct that next to vascular dementia it is the next most aggressive of the dementias with a life expectancy of just 5-7 years.
And sadly your mother is showing many of the signs of it, from the hallucinations to the shuffling of feet. It often can go hand in hand with Parkinson's as well.
I know that one of the defining features of LBD is the fluctuation in attention and alertness, meaning that one can seem perfectly clear headed in the morning and confused and inattentive by afternoon.
And if your mother has LBD she will in time become more stiff, and will start falling more too.
All of the dementias are horrible, but if there is a silver lining in Vascular and Lewy Body dementia it is the fact that our loved ones suffering from them don't have to suffer as long as both are more aggressive, compared to someone with Alzheimer's that can suffer for 20+ years.
I'm sorry you're now dealing with this disease with your mother. Please make sure she has all her legal documents done and final wishes in order. And just enjoy whatever time you may have left with her.
God bless you.

P.S. On a side note my late husband was diagnosed with vascular dementia in July 2018, but was showing signs a good year before. He died in Sept. 2020, and I thank God that he didn't have to suffer any longer than he did. To me it was blessing that he went quickly, as I have a friend in my caregivers support group whose wife had Alzheimer's for 21 years before she finally went to be with the Lord. I just personally can't imagine having to deal with this disease of dementia for that long with a loved one.

I am so sorry. I have 30 yrs experience working dementia units and am now retired…I missed seeing moms early stages of LBD. Yes my mom 90 has had LBD for 5-7 yrs. It took 2 yrs for me to get her doctor to see the cognitive issues. LBD has “showtimers”. They can appear quite normal for long periods of time. Seeing a doctor made her seem normal. Finally at an appointment she was very Lewy. It first began with her insight being poor. Walking on icy sidewalk to see if it was too slippery. Allowing men in her life and bed that seemed unsavory. Then she forgot how to do math {was an accountant} ,no longer could use her cell phone, a hand/arm violent tremor at times, or handle her own meds. She volunteered to stop driving. She said she had brain fog. She started having visual {thieves, children, animals and rapist} and auditory hallucination episodes {voices and singing }…..then the major blood pressure issues started and she could not tolerate extremes in temperature. When covid hit in 2020 and she became isolated at her independent apartment she stopped eating, took med overdoses and could not walk. She had been totally mobile. We ended up with a memory care admission after a hospitalization and then 10 months later she “woke up” normal again and asked “why am I in jail?”…she now uses a walker due to the Lewy lean and risk of falls. She was moved 3 yrs ago to an assisted living in a dementia building. Some days she seemed fairly normal, some days very confused. That's Lewy! At 90 she hides everything from the thieves {packs her room} , needs boost supplement to maintain her weight and has accused me of hiring a hitman. Recently there has been a big drop in her cognitive skills. Some people live 20 yrs with Lewy some die in 8 yrs..Like Alzheimers a definite diagnosis is made by autopsy. We choose {her included} to just live each day as it comes and let God choose when she heads to her eternal life. Good luck..Educate yourself. I also went into counseling. Anticipatory grief has been tough on me. I am 73.

My loved one of 47 years passed away almost two years ago. I still subscribe to this forum and am very grateful for the help it provided for me the during the last three years of my wife's struggle with LBD. It still provides me with help in my grieving process and in anticipating what could happen to me in the next few years.
All the things that are being said here are so true. I went through them with my LO. Fortunately, she passed away before she descended into total isolation. I could see that she was becoming more and more detached and into her own private world. That would have been alright, I thought, until I realized that it might actually become a nightmare for her. She was becoming very paranoid and hallucinating terrible things. Her delusions included that things and people were trying to harm/kill her. She could have ended up in a nightmarish world by herself. I believe it was a blessing that she did not last longer.
To Erin Florida, make him as comfortable as possible and hope that he passes before his quality of life deteriorates into a lonely nightmare for both of you. Good luck. Be strong.

You ask if any of us are familiar with this.
Yes. My brother was diagnosed with "probable early Lewy's Dementia" after he was in an accident. His brain scan showed few changes but when he told the docs he "knew something was wrong" they diagnosed him by symptoms.
He had hallucinations. They would be brought on often by patterns such as a marble wall, a hotel carpet. They were brief, but involved his swallow at the time.
He had consistent problems with his swallow.
His balance was very poor.
He had hallucinations at night so very profound and detailed that he could tell you "There was a pool party outside the bedroom window. A guy with black slicked back Elvis hair and white shorts, a white towel draped over his neck." He would go on in great detail and reported himself as awake, often returning from bathroom when one of these hit.
He would suddenly not hear the phone during a conversation. Would hang up on me.
Phone company tested; nothing wrong.

There were other things, but these were the worst of it until he drove his truck back and forth between a palm tree and a refuse container and injured his head.

He moved to ALF and died of sepsis before Lewy's could get the best of him. He was glad of it and accepted hospice with a kind of alacrity. He was afraid of loss of control (a big one for us).

I agree with the doc. Your Mom's hallucinations are typical. My bro would describe an immigrant woman huddled with her baby in the corner of the room. He shuffled because his balance was so off, and he said he felt that coming for years. He went into ALF when he actually IMPROVED and was able to write long newsy letters again. But the Lewy's was there.

My heart goes out to you. You asked for our stories if we are at all familiar with Lewy's and that's mine. I wish you the very best of luck. Often a postive diagnosis of Lewy's is never made.

Mom was diagnosed with LBD last September. In 1 yr, she has gone from the loving, caring, VERY involved in church (where she's worked with the children's group to loyal BSF leader in her church) to angry, danger to herself & doesn't know who I am most of the time. We recently put her in a great mc facility. LBD is a fast, nasty disease. She is constantly falling from the Parkinson side of it. It's a vicious, cruel disease.
Good luck to you & I'll put you in my prayers

My husband had LBD. Yes it went very quickly about 3 yrs with only the last 9 months of needing care. My Dr. Researched & gave him this diagnosis, mainly because he was showing signs of Parkinson’s. That was rapid. He started losing control of his legs and having trouble walking in addition to the dementia. All through this he was very sweet and never got angry. He lost a lot of weight, also was incontinent. When he passed it was quick and quietly. I think he chose to go!!

There is a skin biopsy that will detect proteins associated with LBD. My father just had it a couple of months ago and if positive will definitely narrow down the possibilities to LBD or Parkinson’s related dementia. Both have similar progressions and are treated similarly. Find a neurologist specializing in memory or Parkinson’s.

My late fil had been diagnosed with LBD & PD in the last 2 years of his life. The last year was the worst. Hallucinations galore, mobility issues with bad tremors at times. My poor mil took the brunt as my fil didn't recognize her as his wife anymore, just some stranger in his home and I'd have to come rescue her from his violent tirades as he'd try to hit her with his cane and throw things at her. I told my mil to sleep in another room for her safety, but she wanted to stay by his side so she could calm him down until he finally knew who she was, and then he'd cry.
This became a thing we dealt with several times a week. We had to hide the phone because he always thought someone was breaking into the house.
One night, I woke up to my mil screaming and I go in their room to see my fil holding a loaded gun in his (tremoring) hand, pointing to his wife. I wrestled his arm down onto the bed and pried his fingers off the gun and promptly hid it (after unloading it) in another room. Mil gave the gun to her eldest son the next day so it was out of the house.
A month before my fil passed away- on Thanksgiving morning tbe- I woke up to find 5 cops with shotguns doing 'a sweep" of our house. I look outside and see multiple cop cars, 2 ambulances a fire truck....I asked what was going on. Turns out my fil got up very early that morning, located the hidden telephone, called 911 and told them that there was currently a HOME INVASION happening and there were several dead bodies in the house and if the police didn't hurry, he would be dead too. But he told the 911 dispatcher to make sure NOT to bust down the door, that my fil had left it unlocked.
A holiday I'll never forget. After apologizing to the officers for coming out on TG morning due to my fil delusional state, my mil and I spent the remaining day convincing my fil he needed better care than we could provide him and had him placed in a local NH where he passed quietly weeks later.
LBD is a rapid, unforgiving disease. I'm glad I was with my mil so she didn't have to deal with it on her own.