RSS Feed Print
Spouse Has LBD - Others Don't Recognize Any Issues
Posted: Tuesday, July 23, 2019 12:23 PM
Joined: 7/22/2019
Posts: 2

Just joining this group.  My husband was diagnosed with LBD about two years ago.  Because I wasn't satisfied with the care he was getting, I got permission from my job to work 100% remote and we moved to Jacksonville FL to have him go to Mayo.  In April, after 5 months of testing, it came down to that it is either LBD or FTD or maybe a combination.  He definitely has dementia, and a cognitive decline over the last two years.  They did an Amyloid PET scan and ruled out Alzhiemers.  He does not want me to talk to anyone about him.  At times, I am so frustrated, that I need an outlet.  We share our social media, so hard for me to do anything there.  He also has gotten on to my phone at times, and read any text message.  One day I was talking to the social worker from Mayo about how I felt and things that I deal with regarding issues he has at times.  He got very angry.  He also at times, is paranoid about certain things.  For example, when I traveled to Atlanta for work, he accused me of going so that I could have an affair. There are things that I don't like him doing at times, like touching me at times in intimate places and then accusing me of not having sex with him.  He will say we haven't had sex in months, but if I try to initiate sex, he finds a reason not to be intimate.
He is driving, even though his neurologist told him not too.  His family has said to me, that "he will know when not to drive".  He an do routine things, he doesn't work, so he cooks, cleans, does laundry, and mows the yard.  One day, he went out and mowed the yard in the morning.  When I went out about 8 hours later that day, he had pulled up 200-300 dollars with of flowers that we had planted about 2 months before.  BUT, he never even told me he was going to do it or ask me.  There was nothing wrong with these flowers.  He stated they were dying, so he just wanted to pull them up.  It is hard to say... hey before you do anything, could you check in with me?  

 I don't even know what I really need here from anyone....  I should be thankful that he has not progressed very rapidly, but I am frustrated that it seems as if, I am the only one that can see where he does struggle and have issues.   

Posted: Tuesday, July 23, 2019 12:54 PM
Joined: 8/8/2014
Posts: 884

Hi, sorry you are going through all of this. Just a couple of thoughts as I read your post:

Set up your own social media with passwords. Don’t tell him; just do it  

Put a password on all your accounts,phone, etc. you need privacy. 

Ignore those who do not know what they are talking about. The doctor has said he shouldn’t drive. It is so difficult, but you will have to make this happen. He will not know when he should stop driving, and you will be the one to have to clean up the mess when he gets in an accident. I was fortunate-my husband only hit another vehicle and then left the scene. I had to hire a lawyer, go to a hearing at the  courthouse. It could have been worse-my husband could have killed someone. This was six months after he passed a driving evaluation. Things change quickly with these diseases. 

Hang in there. 

Posted: Tuesday, July 23, 2019 1:09 PM
Joined: 2/2/2014
Posts: 5636

And I have said a hundred times here. NO ONE ABSOLUTELY NO ONE IS ENTITLED TO A PERSONAL CARETAKER  you earn it by tolerable  behavior.   Caretaking is a hazardous occupation.  Stress kills caretakers.

Make up your mind that your LO's disease is not going to be allowed to kill you

We can help 

Posted: Tuesday, July 23, 2019 1:26 PM
Joined: 1/12/2018
Posts: 227

I believe it is very common that others do not recognize the problems you are dealing with.  I can't count the times friends have said to me, "he seems okay to me," they don't live with him 24/7. It is so hard on the caregiver. You do need to find an outlet, great advice to set up a private social media account. He need not know about it. This site is great for venting and finding answers to the many questions that will undoubtedly come over the course of this disease. We are here for you.
Rescue mom
Posted: Tuesday, July 23, 2019 3:37 PM
Joined: 10/12/2018
Posts: 1494

Others do *not* know or realize what you deal with. Amicrazytoo is absolutely right. Others’ failure to see was one of the most frustrating things for me, earlier. (My DH is more obvious now). This board was a much-needed support, people here DO know.

Another thing I had to learn—don’t ask, just do it. I always talked over everything with DH, then his AD got bad. Questions or situations just confused him. He could not understand whatever the issue was. The disease was destroying his brain (as clearly seen in scans). I had to learn to just go ahead and do whatever had to be done. 

Set up your social media contacts with private passwords, don’t tell him you did it or have them.  Stay involved here. People here get it. You can ask questions, and vent.


Posted: Tuesday, July 23, 2019 11:49 PM
Joined: 6/15/2016
Posts: 120

Welcome to the forum.  You will find lots of help here.  I’m sorry you’re going through’s not a road anyone wants to travel.but here we are.  

I agree about not discussing things.  I’ve also found it just confuses my husband.  He has reached a point where he is in his world and I’m in the real world taking care of everything.  If something goes wrong I know it’s on me.  We are married 41 years and sure it used to be a partnership but now I’m the caregiver.

You need all the support you can get.  The suggestion to set up private accounts sounds good to me.  My husband never had any interest in computers so that is not a problem I have.

I think it’s very difficult for people to understand how far reaching and problematic this disease is and how it impacts both the victim and the caregiver.  Take care of yourself.