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 Behaviour causing move to nursing home 
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Joined: Sun Dec 16, 2012 12:05 pm
Posts: 7
Post Behaviour causing move to nursing home
We always thought mom's medical needs would escalate to the point we couldn't care for her at home. We've been blindsided by the fact her delusions are going to force us to put her in a nursing home. Mom has decided that Dad is abusive towards her (which is 100% not true!). I arrived Sunday afternoon to Mom yelling for help. She had fallen asleep at the kitchen table while eating lunch so Dad pushed her in her wheelchair to her bedroom. She started yelling and hitting him if he got close. She told me he was going to hit her with the bedrail. There are many other stories where she thinks Dad is doing breaking laws or trying to hurt her. Dad is getting totally worn down. She also has episodes where she says she's in hell and wants to die. She told me she had a gun hidden and was going to shoot herself when we weren't around. She's thrown things trying to break a window or mirror so it will cut her wrists. Mom will refuse to eat or take her meds at times. We could handle it when it only occasionally escalated to this level but now it's a daily occurence. Mom also doesn't think she's at home. She could tell me which fuse to flip when I needed to change out a light fixture ... but it's not her house!! We definitely need prayers as we make this decision. In reality, I know as many new issues will be created as are solved. The main difference is that when it becomes too much to bear, we can walk away for awhile knowing someone will be there to care for Mom.

There aren't definite right or wrong answers to the questions we all have but in this forum there are people that understand the struggle to figure out what will work and what is best for our loved one without judging.


Mon Apr 22, 2013 9:09 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Behaviour causing move to nursing home
Your right, there are no right or wrong answers here, if this is something rather sudden could be a possible infection but as we all know they are there often, so even if this is the case it will happen again and again, can your Dad handle that. Not knowing their ages, I was in my 50's caring for my husband so my endurance was a bit better than someone perhaps in their 70's.Some hard decisions to make !

Good Luck !

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Irene Selak


Mon Apr 22, 2013 9:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Behaviour causing move to nursing home
Your mother may very well be experiencing 'Capgras Delusion', where she believes your father is really an impostor out to do her harm. My husband had that for a few years, off and on. He also believed that our house was not our 'real' house but was an exact duplicate. It's a strange--and frustrating--phenomenon. You and your family will be in my 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.


Mon Apr 22, 2013 10:40 pm
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Joined: Fri Mar 08, 2013 10:06 pm
Posts: 3
Location: Hoschton, GA
Post Re: Behaviour causing move to nursing home
My father who has been married to my mother for 53 years was finally "diagnosed" with Lewy Body Dementia today on his second trip in three years to a well known hospital.

The first behavioral symptom was his absolute conviction that my mother was having an affair and trying to destroy him, take his money etc. I was living 2500 miles away and she would call and say he was so angry she was afraid that he would hurt her. He would take all of her clothes and throw them in the front yard. He would call me at work and tell detailed stories of multiple men coming in and out of the bedroom and other stories. He was so convincing and had always been so low-key that half of the time I would wonder if it were true!!

My sisters went to this geriatric hospital and they gave him an all day battery of tests that exhausted him. Long story short, they referred us to a marriage counselor. She called me and said your dad doesn't need me. I think he has a condition called Dementia with Lewy Bodies.

I moved back home to live with them in order to help my mother take care of him and intercede during the times of potential harm. Through a long circuitous route we finally arrived at a Rehab/Physical Medicine Dr. who never confirmed the diagnosis but prescribed Abilify. I had seen the commercials and ads that talked about "increased risk of death" in elderly patients with dementia. He explained that risk to us. Together we made the decision to try it. For a while he was sleeping most of the day, which, though difficult, was substantially better than preparing to call the police every day. (only a slight exaggeration).

That was two years ago and we have not had an incident of any delusion or paranoia since. They adjust the dose and other drugs have been added. The latest prescribed today is Aricept. I came on the site to read the threads dealing with Aricept and found so many contrasting reports from caregivers. It is frightening to "try it and let's see" as the Dr. recommended. I always want to say something hateful when they say that. I know they couldn't understand what that means or they wouldn't say it.

I only know that Abilify has worked for my dad and the situation was serious. I offer this as my personal experience only. Our goal from the start was to keep him at home as long as his care wasn't compromised. The last thing you expect with a wonderful man like my Daddy is to be worried about him harming anyone, especially my mother.


Mon Apr 29, 2013 10:04 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Behaviour causing move to nursing home
Aricept is one of the few recommended drugs for LBD.

http://www.lbda.org/content/treatment-options

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Irene Selak


Mon Apr 29, 2013 10:53 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Behaviour causing move to nursing home
And on the other hand is my mother, who had only a diagnosis of "early dementia" by her GP. When her antidepressant wasn't doing its job, the GP added Abilify and within a month the change was so dramatically BAD that the GP hospitalized her. She was transferred to a large teaching hospital's neurology unit, where the Abilify was discontinued and the LBD diagnosis was made. It was a very scary time and the doctors were very clear that she never should have received Abilify in the first place because of her LBD. She never returned to baseline and has lived in a nursing home ever since.

Julianne


Tue Apr 30, 2013 2:52 pm
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Joined: Thu Jan 17, 2013 9:31 pm
Posts: 38
Post Re: Behaviour causing move to nursing home
My husband went on Aricept in October 2012 and he did well until the dosage increased 30 days later, he ended up in a hospital bed 24/7, since then I have had occupational/physical therapists come to the house along with a nurse practitioner. He is back on the aricept but half dosage and doing better for now. We all know this could be short lived because of the ups and downs of this horrible disease.

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Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Thu May 02, 2013 10:04 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Behaviour causing move to nursing home
Hi All,

Long time since I have been here...I have early LBD, but my Father has PDD.....He has taken a turn for the worse - He is on hospice for "general debility." We are in the process of moving him to a memory care unit, but until then the nights are a literal nightmare for him and for us. We hope the move can occur Tuesday which seems an eternity away. Hospice wants to give him haldol...they are already trying seroquel at a low dose but it's not working....He is sometimes aggressive and for the first time the night before last he didn't know me and also got mad at me....so far I was alway able to calm him....Days are not so bad....but nights, he is paranoid and very afraid...it's so hard to see him so distressed....

I am praying the facility will keep him....he was always the most calm and gentle man.....I also believe he is aware that his mind is going because he has said so. This is even more distressing....

Would appreciate any advice on how to handle the nights and try to convince hospice doctors haldol is not a good choice....

best to all,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sun May 26, 2013 12:44 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Behaviour causing move to nursing home
Tonya, if your father has a neurologist, he/she should be able to convince the facility that Haldol is a dangerous choice.

_________________
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 May 26, 2013 1:19 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3363
Location: Vermont
Post Re: Behaviour causing move to nursing home
Hi Tonya - I've been wondering how you are doing. So good to hear from you but sorry to hear about your dad having PD. From every post I've ever read on here Haldol was really, really bad for LBD patients. Can you get another dr.'s opinion, as Pat suggested a neurologist? or a gerontologist? or someone else who has more experience than the dr. who thinks Haldol is a good idea? All the best to you. Lynn

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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 May 26, 2013 10:25 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Behaviour causing move to nursing home
Hello Lynn and everyone,

Unfortunately Dads neurologist can't make up his mind whether dad has PD...but he does....classic pill rolling tremor at rest, falling , etc.....
Am trying my best to get haldol off the list of meds....He was not given that last night.....hopefully it won't happen...we have seroquel but are only on day 2 of it....
Thanks everyone....

Best,
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sun May 26, 2013 9:02 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3363
Location: Vermont
Post Re: Behaviour causing move to nursing home
Sending you a big hug Tonya. You have a lot to deal with with your own illness so I hope you don't get worn out trying to take care of your dad. Is someone looking out for both of 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.


Sun May 26, 2013 9:33 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Behaviour causing move to nursing home
My brother is with my Dad and my husband is very ill so I am taking him to the ER again this morning...my mother is traveling down tomorrow to help us....Thanks for your kind concern!

Best,
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon May 27, 2013 9:09 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Behaviour causing move to nursing home
Oh, Tonya! You've got so many things to deal with in addition to your own illness. I hope you get plenty of help! Hugs 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.


Mon May 27, 2013 10:31 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Behaviour causing move to nursing home
Thanks everyone! I've missed you all! You are all so kind and such wonderful support.....

I've done everything possible to try to get an alternative to haldol for Dad but I lost the battle...All I can do is pray now...Dad is a strong and determined man.....

Thanks everyone...

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon May 27, 2013 1:20 pm
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