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 We do not know what to do anymore. Help. 
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Joined: Mon Aug 17, 2009 10:12 am
Posts: 1
Location: Colorado
Post We do not know what to do anymore. Help.
My dad has LBD. As you know happens, his personality is nothing like it used to be. The man here now is not the dad I knew. He is delusional about my two sons, big time and says horrible things about them. And becomes verbally abusive of my mom and I who are his caregivers.

Yes, we have learned you cannot reason or argue with someone who has LBD. We know the divert and distract strategy to prevent escalation. It is not working, he becomes angry if we do that or if we do not respond how he thinks we should. When we agree with him, he only gets worse. And even though I know my son is not a thief and my dad has LBD, I have a hard time agreeing with him and having a discussion to that effect. I am only human and a mom. My mom is at the end of her rope, neither of us know how to handle his abusive behaviors anymore. He does not treat my 6 siblings like he does my mom and myself but then they don't live with him. He gets very angry, my dad was NEVER an angry person and says that because no one will listen to whatever he wants to say, he wants to die.

It's a mess. My mom could not quit crying tonight and I was worried about both of them. I felt like I couldn't handle it anymore either. There are no support groups meeting around here because they just had their monthly meeting.

What do I do when he gets this way? He says there is nothing wrong with him, he's never accepted his diagnosis. Says are crazy, he doesn't have a disease, etc. We have no idea what to do. Distract, explain, ignore, agree, none of it works.

We have seen a big change in his symptoms in the last two weeks, worsening significantly. REM Sleep Behavior Disorder, hallucinations, delusions, behavior, tremors and jerking, all are worse. I am trying to get in touch with his VA neurologists to see about adjusting his meds, these things have made us more concerned for his physical safety. He also has congestive heart failure and his breathing has worsened.

So, please, someone help us. Tell us how to deal with his abusive behavior. How to respond to his delusions. Please. We no longer know and are at our wits end.

Stephanie


Sun Dec 12, 2010 9:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: We do not know what to do anymore. Help.
Hi Stephanie - I'm glad you came to this site with your frustration and questions. I am sure it's very frightening. Do you think you and other family members are in any physical danger? If so, I'd try to get your dad to the ER and temporarily away from home to keep the rest of you safe.
I'd call his doctors right away and tell them things are out of control and you need help NOW.
I don't know how old your kids are, but at any age, explaining that their grandfather has a disease that makes him say and do things he would never do otherwise will be very important. I know it's very difficult to deal with our LOs when they are angry and agitated. There were days I just had to leave my dad's room and go back to his house when he was living in his ALF. When you're at home it is a lot more difficult.
If your dad has an infection or is taking a med that is making him worse personality-wise, he needs to see the dr. asap to be treated or have his meds changed.
In addition to this forum there's the LBD chat room. Sometimes it's hard to find anyone on the chat. Also, there is an LBD hotline where you can call and talk with a live person. Good luck - I know it's really hard. Come here often for support, advice, venting, whatever. 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.


Sun Dec 12, 2010 9:50 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: We do not know what to do anymore. Help.
If you have an Area Agency on Aging in your area you might ask them for resources. You could also phone the Alzheimer's Association hotline number [800-272-3900 24hrs/day]. I did that once two years ago from my cell phone in a parking lot, asked to speak to someone about our problems and the nicest person patiently listened to my tearful litany of woes. And she made some good suggestions based on experience and advised me to take certain steps. If you find a local dementia support group, you will be helped immensely and you will get access to information and resources available in your area.

My husband was/is a lot like your dad so I know just what your mother is going through. It must be awfully frustrating for you. You'll be in my thoughts and prayers.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Dec 12, 2010 10:29 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: We do not know what to do anymore. Help.
stephanie.. im sorry you are all going thru this... since we are in the begining/middle im proably not much help.. although what you are talking about the delusions. and mistrust and the person not being who they were is deifnatly happening here...

you mention the va.. please contact the social worker there and ask for help. my understanding is each floor has a social worker . they have wonderful folks to help and give you all a much needed break.. depending on your dads condition and benifits.. there is day care and people available who will help you and your family, as you go down this path..also there are benifits, if agent orange was involved with your dads condition.. parkinsons is a know condition they will honor! and maybe the extra income will allow you to get some help so you can have a break!!
my thoughts are with you...
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun Dec 12, 2010 10:48 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: We do not know what to do anymore. Help.
There is a discussion on this forum about the VA that is very helpful. Wish I'd had it 2 years ago. There's info. that will save you a lot of time trying to navigate the VA. If you do a search you'll find it. I think it was posted by AnnieN. 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.


Sun Dec 12, 2010 11:25 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: We do not know what to do anymore. Help.
Stephanie,
Welcome to the LBDA forums, glad you found us!
All suggestions above are great and I might add there are 2 online support group available to you and your Mom, if you can, make use of them! There are people in both groups living it everyday as you and your family are ! Here are the links!

Good Luck!

(For your Mom Only)
http://groups.yahoo.com/group/LBD_caringspouses/

http://health.groups.yahoo.com/group/LBDcaregivers/join

_________________
Irene Selak


Mon Dec 13, 2010 11:18 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: We do not know what to do anymore. Help.
lynn.. looked all over thru annies posts and couldnt find anything on the VA.. is it possible it was somewhere else...?? would really like to read it ,as we are in dicussion with them right now and every bit of info helps!!

thanks, cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Dec 13, 2010 1:02 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: We do not know what to do anymore. Help.
Cindi, there is more than one Annie on this forum. I believe it was AnnieN who mentioned the VA but I could be mistaken.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Dec 13, 2010 1:05 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: We do not know what to do anymore. Help.
Stephanie,

Sorry to hear about your dad's symptoms and the stress it is putting on your entire family.

Have you discussed these symptoms with your father's neurologist or geriatric psychiatrist? Can you find an LBD-savvy MD in your local area? Delusions are very hard to treat. Has any medication been tried? See Dr. Brad Boeve's "Continuum" paper for a treatment outline of delusions.

Why not call the support group leader? Most of us support group leaders are very busy with support group activities throughout the month -- not just during meeting times.

What about facility placement? Even a temporary placement to see how the facility handles this problem. Or a psychiatric placement in a hospital's psychiatric wing to try different medications to deal with the delusions?

Also, find out from the VA if there's a social worker that can help your family.

Robin


Mon Dec 13, 2010 2:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: We do not know what to do anymore. Help.
Under Financial, Legal and Social Service there is a topic called VA Long Term Care Benefits. AnnieN is a person who has had good experience with the VA in Washington State and was a big help to me when I was trying to navigate the VA system. (even though I'm on the East Coast)

viewtopic.php?f=12&t=1503

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.


Mon Dec 13, 2010 3:55 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: We do not know what to do anymore. Help.
thanks ladies.. i will be back later this evening to read what you all have.. ive been involved with the va.. for over 1 year and a half since we first put in our claim for ptsd.. as i hear that if you can get the ptsd.. they might
(key word here) consider early onset alzhiemers.. since he started having problems when he was 55..
the lewy would be considerd IF they diagnosed him for that, because of the agent orange...and parkinsons... but right now they are still undecided.. on exact diagnoses.. the hallucinations have stopped, the delusions are just occassional.. after that horrible month when they are every night... so need to try on both bases, till we know what we are dealing with..
he has gotten a total of 50%.. 40% on his feet from walking in the waters of vietnam.. 10% on ptsd... ive been encouraged to not give up on the ptsd.. and keep going on the claim.. its a hard battle .. but worth it, if he get good coverage for the rest of his life!!

thanks for all your help.. i wish i could be more help to all of you, butif i learn anything i will share!!

thansk again!!
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Dec 13, 2010 7:47 pm
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Joined: Wed Dec 15, 2010 3:18 pm
Posts: 13
Post Re: We do not know what to do anymore. Help.
I'm so sorry - it's so very hard.

You didn't mention if your father was on any medications - has he tried an antidepressant like Celexa (which can be helpful in reducing hostility that comes with some dementias and also reduces anxiety)?


Thu Dec 16, 2010 10:18 am
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