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 Finally registered 
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Joined: Tue Jun 21, 2011 11:08 pm
Posts: 3
Post Finally registered
Good Morning.
My foster dad has LBD as his mother did years ago. He is 56, he was diagnosed on his birthday last year. I have known the family since I started working for them in 1986. Jim is at work with me 4 days a week. He hears voices and whispers to his friends all the time. He is still able to do some computer work but makes mistakes so checking everything is on me now. I am also running the company as well, Jim thinks he still will inherit it and has tried to fire me. I coordinate all his doctors appointments and take him but the company has to close when I am not here.

My foster mom works full time for a different company. Jim refuses to believe he has LBD and refuses to take his meds. His wife has to hide them in his food. He stays with his dad on Fridays because I am not here and his wife has to work. He still argues that he can drive and that the doctor has his 'packet' that will let him drive. He has left to go to the doctor to pick it up a few times. He has also tried to get a divorce so he can meet his 'girlfriends' for sex. He believes the voices and has said he would rather talk to them than us. He is important now (he thinks) and the mafia and sheriff are all his friends and sex videos of him are all over the internet. Most of the stories are funny, but his arrogant attitude is extremely difficult to deal with.

Most of the things I have read on here talk about older people where one person is retired and home. Is there a forum for us? Where we have to work and cannot put him in daycare because he will argue and leave. All the daycare around here is also only partial days. What do you do when you have to work? How do you afford the daycare? We cannot leave him alone so the rare support group is out. All he does at home is watch TV. He is so ungrateful and arrogant, he always has been but this is worse.

I am so busy here 4 days a week and at home the rest, I live 170 miles away. I also have a dog kennel, am the 4H dog group leader for our town, am active in the Grange, and have a fiancee. Mom has talked about day care but how? He will fight it at this point. How do you all get through the LOs nasty attitude and still be so loving and caring?

I am really starting to hate him and his attitude. He cannot even say he made a mistake, he blames the computer and us for everything. I read as much as I can and everything is all warm and fuzzy about redirecting and smiling. What do you do when the LBD person is horrible and pushy? We cant just let him run off on his own.

Thanks for reading and have a great day!


Wed Jun 29, 2011 12:43 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Finally registered
Sorry you've had to join this Forum.

There are several caregivers here who are still working. Many work for their own sanity -- getting out of the house and away from 7x24 caregiving.

Perhaps your family can get counseling to learn how to handle your foster dad's attitude. It doesn't sound easy. In some communities, the Alzheimer's Association (alz.org) conducts training classes for family members on dealing with dementia-related behavior. Maybe check to see if there's a class in your area.

Good luck,
Robin


Wed Jun 29, 2011 1:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: Finally registered
Welcome, and I'm so sorry for your need to be here. There are a number of younger people on here dealing with parents or spouses, and even a few younger folks who have LBD themsleves.

Someone should be in close contact with his drs., letting them know symptoms and frequency, and that he won't take his meds. Perhaps the drs. will be of more help re: changing or adding to the meds.

If the family has $ to hire caregivers, I'd suggest getting someone to be with him as often as possible. If you can get away from him more, you will get more respite from his nasty behavior. My dad went through the nasty behavior thing on and off through the course of his illnesses. It was very difficult being around him then, but he was living in a ALF when things got really bad so sometimes I'd just leave him earlier than I had intended. I could only take so much!

You really have to say to yourself over and over again "this is the disease talking. This is not my (spouse, partner, parent, friend, etc.) My LO would not be doing this if they could control it. There is something wrong with his/her brain that he making him/her behave this way." It's hard, but if you can try to be objective about it that will help you some.

Come here for support and whatever you need to ask about. We're here for you! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Jun 29, 2011 1:55 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Finally registered
Welcome to the LBDA forums,
I too am sorry for your need to become a member here and I hope it will be a helpful forum for you and the family !

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Irene Selak


Wed Jun 29, 2011 2:50 pm
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Joined: Tue Jun 21, 2011 11:08 pm
Posts: 3
Post Re: Finally registered
Thank you all so much. I am sorry this forum even needs to exist. I will look for the Alzheimers training. He has always been arrogant and we just ignored it. I swear now he would wear a cape and crown and order us around if could. Maybe we should get him one and call him king Jim, laughing always helps! :lol:

I am in contact with his docs, they have told him to take his pills, he says he doesnt have to because nothing is wrong (he is 100%) and he is sure they are addicting. When he was first diagnosed and taking pills he tried to flush the arricept down the sink and ended up in a pushing match with his wife. We have tried switching his meds and the current group seems to work the best but nothing is perfect.

He is also convinced (capgrass) that his neurologist is an imposter, the 'real' neurologist killed himself because his wife left because he drank too much. Jim refuses to see any symptoms and talking to him about LBD causes him to start screaming so we dont bother anymore.

Jim has never had any friends and now he is so popular (the voices and internet sex thing) that he doesnt need us anymore. He was going to get a divorce and his girlfriends were going to take care of him. We kept telling him that he could only see his girlfriends if they came to the house, he wasnt allowed to go to their house. He walked into a neighbors house and scared her. So far no girlfriends have volunteered to take him. His only friend is here at work and the friend is having a hard time with Jims changes.

I have printed or gotten so much literature for the family and in Spanish for his friend. Nothing talks about how to deal with the refusal to help themselves. It is so frustrating.
Thanks again,


Wed Jun 29, 2011 3:16 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Finally registered
Has anyone mentioned the possibility of Frontotemporal Dementia? Your foster father's behavior and arrogance sounds much more like FTD than LBD.


Wed Jun 29, 2011 3:50 pm
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Joined: Tue Jun 21, 2011 11:08 pm
Posts: 3
Post Re: Finally registered
I looked Picks disease up on google and I remember it being mentioned and tossed because of the strong hereditary factor in this family (I think). I will ask when we go for the lumbar puncture. He did have a multitude of tests including various cognitive and memory and MRI and CT scans. He is currently in a research program at UCSF memory and aging center. The last thing they said was they were going with Lewy Body as the diagnosis.

Realistically the symptoms for Picks basically describe him and most of those symptoms he has always had. I will look into it more as well, but if the meds are the same, why does it matter what it is called? His brain is already on the donate list and hopefully somebody will learn from him so their daughter, grandson and granddaughter who already look like they are next to get it will not suffer as much. The other daughter and grandchildren seem okay. Jim was always different and the family and I can see it in the next two generations already.

I contacted a caregiver service last year when Jim was really going downhill and at this point he is still too able for a caregiver. He would not understand why this person was at his house, and not listen. We are in the 'too sick to be useful and not sick enough to accept help' stage. When he is worse we will have more resources and actually have help. This in between part sucks. :|

Thanks,


Wed Jun 29, 2011 4:16 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Finally registered
One reason why it matters what you call it is that the meds aren't necessarily all the same. LBD patients have some specific medication sensitivities that are important to know. (Maybe the other dementias have their own as well. I have enough to do just keeping track of LBD.)

Unfortunately, a lot of the medical community does not know these medication sensitivities, so caregivers need to be able to know them and speak up to avoid some really catastrophic effects.

I know that upon brain autopsy, a lot of dementia diagnoses turn out to be wrong, but to be on the safe side, if your LO's physicians say he has LBD, you should assume that these medication restrictions apply to him.

Julianne


Wed Jun 29, 2011 6:48 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 236
Post Re: Finally registered
Hi and (sadly) welcome - my heart goes out to you in your efforts to cope in this terribly difficult situation - and still maintain your sense of humor!
I'm still working full time at a demanding job, plus trying to help care for my mom, diagnosed 2 months ago. She is 94 and my dad, who is still active and is the primary caregiver, is 95. We have a little help 2 mornings a week. We are fortunate that my mom, unlike your foster dad, is sweet as can be and very cooperative and still has quite a good sense of humor herself (though she does not think there is very much wrong with her except for lacking energy.) My dad is a bit cranky at times but I think that is mostly being tired and scared of the future. At least they live only 10 min away.
It must be so distressing to face the hostility and arrogance, especially when you are trying so hard to help, and doing so much for him! At least he's in a first-rate clinic - I know some of the UCSF folks because our group in Davis works pretty closely with their group. Is there anyone he respects (aside from his imaginary companions?) Would he be more willing to listen to or to take the advice of a female MD? Would he be able to follow advice from doctor via an internet communication? My mom has a web-based link with her doctor's office, that I take care of for her now for the most part - in principle, she can send emails and get advice. Maybe not seeing the doctor physically would make it easier to accept this person as a friendly presence.
It does sound as if it is critical for your health that you get some rest and help! Thinking of you and hoping you will find your way through this -
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD


Wed Jun 29, 2011 9:52 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Finally registered
Well, the MAC is one of the top research centers in the US for FTDbv. And their FTD caregiver support group is one of the largest in the US.

Unfortunately AChEIs are recommended in LBD but are not recommended in FTDbv. This makes treating your father quite tricky.

One of the MAC MDs recommended a book to me several years ago, "The Banana Lady." You might enjoy reading it. It gives fascinating portrayals of various people with various dementias (many autopsy-confirmed). It was written by a behavioral neurologist.


Thu Jun 30, 2011 2:02 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Finally registered
I'm glad you registered and can interact with us. Welcome!

I work full time and care for my husband. He is not young and he is not arrogant and he accepts his diagnosis. I work from our home and he does not try to "help" me. He does not like going to the day program but he understands that is one of the ways he can help me ensure that he stays at home for as long as possible. That makes a huge, huge difference. I am often tired and sometimes stressed, but I am not facing the terrible constant stress you and his wife must be feeling.

You are certainly not alone, but each case is unique. I hope you find some training resource or book that can help some.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Jul 04, 2011 2:36 pm
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: Finally registered
Hello and welcome to the group. While I can't offer any good info. like the other posters, I do have one tidbit to consider in dealing with an arrogant, irrational man (not my Tom who has LBD but my dad who was Bi-polar.) First of all, you cannot deal rationally with an irrational person--you must be creative--LIE. 8) By that I mean you approach everything in a positive non-confrontational manner that plays to his arrogance. For example, his pills are supplements to increase his stamina, the drs. want you to drive him to maintain his sharp eyesight, etc. It doesn't always work but until the drs. get a handle on his meds it's worth a try. Sending you good thoughts.....Kathy

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Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Tue Jul 05, 2011 8:41 am
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