A few days ago things were manageable, but then the wheels fell off

Lorraine49

My DH has had Lewy Body dementia for 4 years now. He is 85, I'm 75. Up until just recently, we've been doing pretty well. I was even able to leave him at home alone while I work (just 3-4 hours a day in the morning). A few days ago, it was like someone pulled a switch. He has always been very verbal, but now won't stop with nonsense sounds and mumbling. He won't eat, and today I caught him throwing away some of his pills. He's very paranoid, always thinking there are people in our house and we have to get away. He's even pulled me out of bed in the middle of the night demanding that we leave. Two nights ago, he got into the car at some point (I have the doors wired with sound, so don't know how I missed it) and rolled all the windows down. My car has to be started to work the windows, so I know he turned it on. So scary - he could have backed into the garage door, or worse, poisoned him and me with exhaust. Since, I have taken away his keys. Last night we went to bed at 8:30. He never slept at all, and neither did I until 4:30 am. He prowls around the house, emptying drawers of all his clothes. Being up all night is not new. He has just become incontinent but didn't complain when I put depends on him. When do I know it's time for memory care? He's a vet and the VA will be providing home help starting next week, for while I'm at work. Should I wait and see if that will help? I just know I can't live like this. It isn't even his behavior - it's the fact that I'm not getting any sleep, plus I'm battling a very painful hip and am only about 70% mobile. One more thing- yesterday I took him to Urgent Care, thinking he might have a UTI (my mom had dementia and suffered from this a lot). I know that can change behaviors. Well after waiting for about 20 minutes, he demanded we leave and caused a big scene so we had to leave. I'm just puzzled about the rapid decrease in function. Can this happen so fast?

jfkoc

hi…

my husband dad LBD so i understand all to well

please get in touch with https://www.lbda.org/

Gig Harbor

it’s time. If he has a UTI and does not improve with treatment, it is time. Get his name on a list for placement in a VA facility. You are important and you must protect your health in order to provide care and supervision for him. You are his lifeline. Good luck.

CindyBum

Well…I would say my DW moved pretty rapidly into Stage 5. She was just diagnosed 6 months ago with dementia. Because her speech was the first real indicator of her cognitive issues, I'm pretty sure she has FTD. She may also have Lewy Body based on the tremors that appear. In my reading, both often have a more rapid progression. I've also found the move from Stage 4 to Stage 5 more jarring in how much more pronounced my DW issues are in Stage 5.

It still could be a UTI. I have no idea why we can't test for that at home these days, to be honest.

But, either way, I'm with Gig Harbor. You need to sleep and so does he. He simply now has more difficult behaviors that you cannot manage alone. It's ok to know that what is best for you is also best for him now. I'm so sorry you've reached this stage and with a sudden turn into it. Sending you strength.

xoxo

cavenson

CVS does have Urinary Tract Infection Test Strips (CVS Health Brand) that have a 4.6 rating out of 5 stars. It costs about $9 for a box of 3, and they advertise that they're accurate in 2 minutes. I bought some but haven't used them since the doctor was able to see my DH within a couple of hours and prescribe antibiotics.

SDianeL

In my opinion, he should no longer be left alone. He could be in danger. Ask the VA Nurse that question. My husband didn't have LBD but he had Vascular Dementia & Alzheimer's-Posterior Cortical Atrophy. Yes, progression can happen very quickly. I would start the process for a VA facility now. The application is horrendous. It depends on available beds. There may be a waiting list. I had to place my husband in memory care in January and moved him to a VA facility in February. He got great care there. He went downhill rapidly 6 weeks before he passed in August. He was diagnosed in 2021.

marier

So sorry you are having to cope with all of these behaviours while trying to work and take care of yourself orthopedically.

I do agree with contacting VA and getting him on wait lists etc… I would also see if I could get him into a see a geri psych for medication management. The VA may have one on staff. I use the VA here for my husband and found the staff to be extremely helpful and they do offer a lot of help with respite care and home health aides.

My husband is at stage 7 and I wouldn't be able to keep him at home without the VA and Hospice help. Again so sorry you have to deal with this.