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 Change in behavior 
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Joined: Mon Sep 18, 2017 6:56 pm
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Post Change in behavior
My friend with LBD was d/x 6yrs ago. He is able to stay at home, alone, for about 5 hrs 3x a week, while his wife works. He can't drive, is ambulatory, feeds himself (if given food), has some long term memory, can't read or write and struggles w daily activities at times. His behavior became a problem about 2 months ago; he was verbally abusive to his wife. His neurologist prescribed Seroquel about 4 years ago, but his wife never gave it to him. The new physician was against him taking it, but when his behavior become worse, he also prescribed it. There was a noticeable difference and his behavior changed dramatically for the better. His wife is exhausted, emotionally, as all caregivers are. I'm trying to offer help because she has NO family near her. She is noticing changes again; he threatens to leave her and he doesn't seem to understand much of what she says, but gets angry. The weird thing is, the next day, he seems to be remorseful towards her. Hope this makes sense...Any thoughts??


Mon Sep 18, 2017 8:08 pm
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Joined: Tue Jul 25, 2017 6:30 pm
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You must be a really good friend. This disease is all about change. We're at the end of year six and my 67-yr old husband just stopped walking two months ago today. We were both stunned. We knew the ups and downs and fluctuations in his abilities but this was so weird. He was immediately bedfast, and is breathing horribly right this minute on oxygen. In two months! Two months... He fed himself at first and enjoyed his coffee-never complained about being bedbound. Now it's morphine and Ensure, with an occasional whipped yogurt I can feed him despite swallow difficulties--no tv or music because the chaos wears him out. The ugly behavior and delusions were just awful, but all that went away. Everything does. I just hope she has all the legal work in place. We did it soon after getting the diagnosis, thank heaven.
I'm sorry to write about our realities. My posts don't get responses generally but writing these things helps me not hang onto them so. I guess I'm setting them free. Wish I could help him be free of this... Best of luck to you all!


Sat Oct 21, 2017 8:05 am
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Joined: Mon Apr 03, 2017 8:13 pm
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Wow KBKC. You are a rare kind of friend. One of the most important things you can help with is making sure that your friends are finding appropriate medical care. If he hasn't had one, he should have a complete neuro-psych workup, preferably from a group of physicians who specialize in Dementia. Look for one at your nearest teaching hospital. If they have to go with an individual doctor, it should be a neurologist or geriatrician or neuropsychologist who specializes in dementia. Many neurologist only give lip service to dementia patients.

suzaroo, I am so sorry for what you are going through. I hope that your doc referred you to hospice so that you are getting all of the help that you need. Also, please join us on the alzheimer's forum. Lots of good folks as caregivers for all types of dementia. https://www.alzconnected.org/discussion.aspx

Blessings,
Jamie

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jjKing, caregiver


Sat Oct 21, 2017 6:37 pm
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Joined: Tue Jul 25, 2017 6:30 pm
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Thank you, Jamie! Yes, we have excellent care through hospice, and that's made it possible for him to stay home. We were so lucky to be sent to the right neurologist by the doc who treated my husband's sleep apnea--both very caring physicians. Thanks for the cg site! I surely will visit.


Thu Oct 26, 2017 12:22 am
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Joined: Mon Sep 11, 2017 10:52 am
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My husband is not able to tell when it's me that is caring for him more and more often. It's so hurtful to experience and I'm at a loss as how to handle it. He can be talking normal but thinking I;m someone not his wife. Please if you have experienced this help me to know how to respond to him and what to say. Thank you.


Thu Nov 09, 2017 11:32 am
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Joined: Tue Jul 25, 2017 6:30 pm
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Post Re: Change in behavior
Marguerite, just let it go. If you can make yourself pretend to be whoever he thinks you are, it may be easier for you. Arguing is pointless. When he sees the 'unseen', as I came to call them, and the vision bothers him, tell him you were tired of all the noise and made them leave. When an unseen is on the roof, say the police came and got that man. The last month, my husband was on what I called his 'air phone' nearly every day and seemed to take pleasure in talking/ listening to old co workers and friends. I figured it gave him plenty to do and gave me a break. Learn to go with whatever he sees because it's really real to him. If he gets mean, leave the room for ten or twenty seconds and return. Chances are he'll have forgotten the problem. All I had to do the last month was walk to the other side of the hospital bed and we had a fresh start. He had left side neglect (big name is asomatognosia) so going to his right side made some of the clouds go away. Still, it was tough to accept that all three of me (that's what he firmly believed) were not his favorite people. He fired one of me because I just wasn't working out. It had its moments of humor. Look for them! Everything went better if there was some laughter occasionally!

My 67-yr old husband just died on Halloween after a gruesome decline that made me wonder just how much worse it could possibly get before his once strong body finally quit. He's at peace at last. You must take care of yourself!! He's going to die with this stupid disease and there's no way to fight it. That's the thing that made me so mad--having to give up and watch him fade.


Thu Nov 09, 2017 1:28 pm
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Joined: Mon Apr 03, 2017 8:13 pm
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Suzaroo,
I'm so sorry for your loss. You have been through a lot. I hope your find comfort in the memories of your good times together.
Blessings,
Jamie

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jjKing, caregiver


Thu Nov 09, 2017 4:33 pm
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Joined: Mon Apr 03, 2017 8:13 pm
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Marguerite,
My DH often doesn't know who I am. He just acts agitated that I'm not there (even when I am with him). I just put a big smile on my face and say "I'm your loving wife Jamie. And you know what? We've been married 45 years. Can you believe it? doesn't it seem like we just got married . . . blah, blah, blah." It's a spiel that I've said many, many times, but every time it brightens his mood. He's ALWAYS happy to know that I'm there with him. I hope you find what works for you.
Blessings,
Jamie

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jjKing, caregiver


Thu Nov 09, 2017 4:39 pm
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Joined: Wed Oct 11, 2017 3:55 pm
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Post Re: Change in behavior
Suzaroo,
May your husband's memory be a blessing. I hope you are able to summon the guy before this terrible disease.
MB


Thu Nov 16, 2017 1:49 pm
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