How do you handle uncooperative and manipulative behaviors?

One question, was he like this before his diagnosis? If not, talk with his MD and see if any med he’s taken has caused this. If he was like this prior then the decision is obvious. There are counseling groups for you that will help as well as giving you advice on how to deal with it. Hang in there!…David

@cmiddlet Oh, wow. I can’t even imagine how difficult this must be for you and the kids. To see their father like this must be so frightening. And, as they are young teens, they really don’t know how to deal with life, much less this bombshell of a change in their dad. I agree with @dabbs, see if the doctors can recommend a therapist or support group, especially for the teens. You might also check with a mental health center to see what support they offer.
This might be a good resource for you:
https://www.lbda.org/local-support-groups/?state=co

Do you and the kids feel safe at home?

I am so sorry. Our dementia issue is not LBD, ( I say “our” because we share the effects.) but our doctor has prescribed medication that has helped tremendously with his uncooperative spirit. When my husband is uncooperative, I have learned to just walk away, do something else for a few minutes, then come back and try again. Arguing or reasoning is useless. The illness has taken away those capabilities and it just frustrates both of us. Our journey is different, but our teenaged grandchildren have been able to be very understanding and helpful since their parents and I have been pretty open with them about what is happening to their Papa.

@cmiddlet How has everything been going for you this past week? Has your husband been able to settle down some? I worry about you and send you a virtual hug!

My husband too (mixed dementia DLB on right side of brain) everything is about him and immediately. After eating, the plate must be removed within seconds. I do not think it is meds -and I have asked drs who say no - but an exaggeration of his own personality. I’m my opinion. Very difficult as he says nothing and I have to read his mind.

Well this is the start of spring break for my kids (12 and 15 years old). Instead of driving 14 hours to his sister's, we flew. That was an experience - getting through airport security. He had some kind of panic meltdown or whatever you call it. He would not take his Clonazepam. He "looks" normal so the airport security people won't take me seriously when I try to explain he has LDB - they automatically presume he is on drugs or something.

We finally made it to his sister's house. Then he accused me of punching him in the privates - my kids were mortified - they said "Mom did no such thing, Dad!".

Is there something extra special about spouses of LBD and dementia people that they just use us as some kind of punching bag? It is really heartbreaking because he was such a different person before. Now its Capgrass Central with alot of extra blame, shame, guilt, and fear on top.

Is there some kind of card we can get so we can get thru airport security?

On a fortunate note, my 76 year old mom who is my 94 year grandma's caregiver is gutting and remodeling the old farm house. Grandma's hospice nurse only lives a half mile away. So, this summer the kids and I are taking him there when it is finished. Then the next 6 years (until my youngest can graduate high school) I know I can take him there when I need a break. I di the same for my mom. She went on a trip to Europe with a cousin - first time she ever went out of the country. I took care of my grandma. Grandma has Alzheimer's - at least she is mild mannered, funny, and a lot like Dory in Nemo movie.

My husband - his LBD is horrible - it is like being with someone on a perpetual bad acid trip. It is exhausting and the dozens of doctors we see are just like "that's part of the disease. Learn to live with it "

American Airlines has a lanyard type thing that the person wears and it signals staff and crew that cognitive issues are in play- very helpful. I print out a sheet with his name, my name, cell phone numbers, local names and numbers where we are visiting, and put it in his pocket in case he gets away from me.That happened once in Boston, fortunately a kind person used the info sheet to call me and then waited with him- he had walked to a completely different concourse.
The situation with your mom and grandmom sounds like it will be really helpful for you and the kids. Maybe they could also go for summer visits- help the grands and have a break from the chaos Dad causes, less stress and work for you while they’re away.
Unfortunately life with LBD will not get better. We stopped going out to eat after a terrible meltdown at Cracker Barrel, but curbside pick-up works great. He was “exited” from our dental practice after a terrible tirade in the chair. He was still safe at home, so after one terrible annual summer week at the shore, I made the next year’s plans quietly, packed the morning we were to leave, and took the kids. While I was packing, he asked what I was doing, told him it was shore time and he didn’t have to go this year as he had such a bad time last year. He protested mildly, told him I had rented a smaller place, he would need to sleep on the fold-out couch. A non-starter, we left and had a wonderful family time together, with other family too.
My point being- you have to protect yourself and you have to protect the kids from the craziness and chaos, as much as you can, as best you can. You are not required and he is not entitled to have your and your kids’ lives revolve totally around him and LBD. If you don’t work at and practice “loving detachment”, it surely will.

centre - thank you! Very helpful and I will definitely consider your experience.

Another thing he does that is unsettling and annoying is in the evenings he follows me everywhere. Even to the bathroom. He is convinced I am seeing someone in the bathroom. The most frustrating and craziest thing, even the kids wait outside the door (i need to wipe in private) and tell him I am not seeing somebody in there.

I just hope this whole experience doesn't damage them and eventually I get to live MY life at some point.

@cmiddlet It all sounds so tough and I really admire you for your perseverance. You are so strong. And that’s what the kids will learn from all of this—that their mother is strong.
Do you have someone you can talk with? Can the school recommend someone for the kids to talk to?

Some days, I admit, I feel like I just don't have the strength to handle it. I see a psychiatrist thru my employer's assistance program. We all see a family counselor once a week. The kids have excellent support at school.

I am just sad, angry, and stressed out about it - the counseling does help. The reality that this could last years and years though - the once loving husband is more agitated, paranoid, and uncooperative. I've been reading about recent research into aggression toward caregivers, so at least it is understood these patients commonly do that.