Follow
Share

I bring this up as it doesn't look like there have been any postings on the subject in awhile.


My dad is 92 and was diagnosed over a year ago with 'dementia'. I finally asked his geriatric psych a few months back if they had ever determined what kind. She showed 'mixed dementia' in her file but had told me months earlier that she suspected DLB. We had to take dad to urgent care this past week and then they referred him to the ER. He was having swallowing problems. They aren't really sure why but they did not feel he had a stroke or anything. I noticed on his last visit to his primary care doc that they showed 'Lewy Body Dementia' in his file. I know sometime back that they did some blood testing that included vitamin work so I'm not sure if that had something to do with the diagnosis. I've been doing some reading about this and really, he has every single symptom except the hallucinations which may have happened years ago before I was this involved with his care. He has never said anything about this.


I'm not sure how many others have dealt with DLB. The ups and downs of this disease are really, really hard. He will have some days when he is totally 'put together' and then drop into something else for awhile that doesn't make sense. It is such an up and down journey from day to day! I never quite know what to expect. His aggression some days is more than I can manage and he get so down right rude to people sometimes. These swallowing problems are also new. I don't know if we're advancing to something more nor do I know where we're going from here. He still lives at home with the help of part time caregivers but refuses to move. Does this disease have stages? Maybe we're at a mid point.

Lewy Body Alzheimer's is the most aggressive and generally hits younger people. I've known several people whose loved ones had it and were dead in two years after diagnosis, so plan ahead including a prepaid funeral. As a rule, the younger Alzheimer's hits, the faster a person will die of it.
Helpful Answer (0)
Reply to cetude
Report

A longtime agingcare poster, JeanneGibbs was caretaker for her husband, Coy, who had LBD. Here are posts of hers using the name Coy to search by. She may not discuss stages but she was inspiring in her care of her husband with LBD.

https://www.agingcare.com/search?term=Coy
Helpful Answer (1)
Reply to 97yroldmom
Report

Bumping up.
Helpful Answer (0)
Reply to Llamalover47
Report

My Ex has Lewy Body Dementia as a diagnosis. All I can say is that when the time comes that he isn't able to eat that my daughter doesn't put in a feeding tube. It only prolongs the agony.
Helpful Answer (1)
Reply to Arleeda
Report

My Mom has LBD. And yes, it has stages. Call the Alzheimer's Association Helpline, they'll give you what you need to prepare for the road ahead.
Helpful Answer (0)
Reply to mmcmahon12000
Report

Hey, Babs75, everyone needs to laugh! Thanks for sharing that he took the shaver to church. It actually sounds like something my dad might have tried. =) My dad however, took his electric shaver all apart. I don't remember how many I ended up buying for him. Thankfully, he had a marvelous male CNA with hospice who fixed one of the shavers and managed to keep it hidden until it was needed.

Keep up a sense of humor. It will help you in getting through the harder days. Remember the good things and know that the disease isn't your dad. If he's as wonderful as my dad was, you have a lot to be grateful for!
Helpful Answer (0)
Reply to busymom
Report

My husband had Lewy Body Dementia. What you describe is definitely Lewy Body Dementia and it does have stages. My husband started with the hilucinations and they kept getting worse. Then he started dropping things and falling
alot. Not being able to swallow is yet another stage. I don’t really know for sure but Tend to think it is closer to end stage than half way. In the last month my husband refused to eat. Idon’t Know if it was because he couldn’t swallow or he just didn’t have any appetite what I do tnow is that one of his therapists stood me that at some point he would have trouble swallowing. It is definitely a rollercoaster they can get really bad and then doa complete turn around until the end when they don’t turn around but slowly go down hill.
they reap each a point where they do not eat or even talk ad basically just sleep most of the time. Fortunately this last stage is short lived.

Hope this helps you understand this terrible disease better.
Helpful Answer (1)
Reply to JPC2842
Report
Babs75 Mar 25, 2019
I have to laugh. I'm not sure if this is the dementia or just my dad but in the care log from the caregiver today, it said that he had taken his portable shaver to church and pulled it out during the service and started shaving his face. Oh dear...............
(2)
Report
Babs I have no answers but my heart goes out to you (((hugs)))..
Helpful Answer (0)
Reply to DobermanLover
Report

My mom will be 79 in two weeks. She was diagnosed with “evidence of Lewey Body Dementia” and vascular dementia 4 years ago. She eats whatever she wants (cut into small pieces for her) but says she sometimes feels like her food “chokes” her. Most of the time her speech is barely a whisper and sometimes she’s only mouthing words. It’s VERY hard to know what she’s saying & I feel awful about it. The therapist at the nursing home says the muscles in her throat are very weak. She’s only been there two months, before this her Dr. didn’t offer an explanation, but my brother & I figured it’s the Lewy Body. Thankfully, at this point we don’t have aggression issues with her.
Helpful Answer (0)
Reply to mollymoose
Report
Babs75 Mar 24, 2019
They told my dad they were going to order a speech therapist for him, not because of speech (but he sometimes sounds like he's talking with a mouthful of marbles) but something about his throat muscles.
(2)
Report
Oh, and the crappiest part of LBD in my opinion, is, there are no specific “stages” to monitor by. A lot of dementias have something to gauge progression by... not true with Lewy 😞It’s like walking in the dark. There may be a step up...or a step down.
Helpful Answer (1)
Reply to Longhaul
Report
Babs75 Mar 24, 2019
What has been interesting about this is that I see him so much, that I don't really see the changes unless I think back a couple years. People that haven't seen him in the past 6 months have commented how much he's changed.
(0)
Report
My dad is 84 and diagnosed with LBD. (Although true diagnosis cannot be determined until post mortem)
I am 24/7 care for him and I can tell you, the ups & downs are exhausting! Not just day to day, but sometimes hour to hour!
I found tons of support from a couple of online groups. LBDA and lewybodydementia.ca. Wonderful. Highly suggest it, because it is satisfying (and disturbing) to have contact with so many in the same situation. Many scenarios (no matter how preposterous they may sound) are being experienced by many others.
There is always that strong possibility he has LBD as well as some other dementia together.
All I can say, is buckle up...it’s gonna get bumpy...😉
Helpful Answer (1)
Reply to Longhaul
Report
DobermanLover Mar 24, 2019
Oops
(0)
Report

Ask a Question

Subscribe to
Our Newsletter