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.
https://www.agingcare.com/search?term=Coy
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!
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.
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...😉