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 my 98 year old muim 
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Joined: Wed Feb 18, 2009 12:35 pm
Posts: 5
Post my 98 year old muim
Hi there

Briefly I need some help. I have a 98 year old mother who has been in residential care for the last 3 years. She was never really diagnosed with dementia and never saw a consultant. I never really queried it before because of her age but after reading your web site I am nearly sure she has LBD.

It all started 4 years ago when she started to have vivid hallucinations in her flat, ( imaginary people, animals walking around, birds flying around the room etc) and I was constantly phone in the middle of the night as she was terrified. She halso had great difficulty sleeping and talked constantly at night as though she was acting out her dreams. She became exhaused as did I and once talked non stop for 14hrs.

The main reason she was admitted to hospital several times was because during these episodes she would fall over and hurt herself quite badly. On admission to a residential care home she was put on antipsychotic medication because of her loud outbursts.

You may wonder why at age 98 i am trying to do something now. She crys out in distress all the time, hallucinates cries and is generally very unhappy ( well at least she appears so. She is still aware of who I am. She is no longer on antipsychotics as they didnt help apart from make her extremely sleepy. She is alo on sleeping pills and antidepressants. All I want for my mum is a bit of dignity and peace. I am also finding it extremely distressing. Her speech is very bad but she gets frustrated as she appears to know what she wants to say but most times cant get it out. I feel she is being mismanaged.

The GP is not very sympathetic and I am finding it really hard. I suppose I am just looking for some support. * has mitral valve stenosis and atriall fibrillation I dont think she can take any of the medications that people on the site have suggested.

Sorry to be so long winded I think I am just trying to get it off my chest to help me cope. God forgive me but it is getting harder and harder to go and see her albeit that I would never abandon her and would always go.

Thank you for listening and kind regards to you all.

Lorraine


Thu Feb 19, 2009 6:31 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Hi Lorraine,

Do you live in the UK? If so, I encourage you to contact the Lewy Body Society (lewybody.org). And I also encourage you to sign your mother up for brain donation at the Queen Square Brain Bank or with the folks at Newcastle (Dr. McKeith is a world expert on DLB).

Please find the Boeve "Continuum" paper on the LBDA.org website. It will give guidelines for how to treat your mother for hallucinations. In particular, look at the section on dementia meds or AChEIs. You didn't mention if your mother was on any dementia meds (such as Exelon/rivastigmine); this may help with the hallucinations.

If she does have LBD, her speech will likely continue to deteriorate.

Some LBDers can't take "sleeping pills" (which is a fairly broad category). Are you fairly sure that your mother isn't have a bad reaction to any of this medication?

Good luck,
Robin


Thu Feb 19, 2009 6:38 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Lorraine,
I am glad you found the forums and welcome. We all need a place to vent so to speak and here people will listen, Yes your Mom is 98 but she still is your Mom and you only want peace and dignity for her, I certainly understand that.
Robin of course has given you some good info, I wish you luck and come back often as you need to.

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Irene Selak


Thu Feb 19, 2009 7:29 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Lorraine,

Welcome, pleased to meet you.

This site is a great place for information, sharing and venting.

Just because your mom is 98, bless her heart, doesn't mean she can't be healthy, dignified and in good spirits. I really disliked it when doctors used to tell my mom "its your age." She could have run circles ..at 93 ...around most of the doctors. :) Lost her last fall and miss her every day. She was a great woman as I am sure your mom is also. They have alot to offer and share at that age. One of the "homes" that my sister put mom in gave her medication that zoned her out and she was never the same after that. I learned a very sad lesson at that time. With my hubby I now scrutinize every medication he takes.

Wishing you and your mom the best of luck. Will keep you in my prayers.

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Dianne C.


Thu Feb 19, 2009 8:16 pm
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Joined: Wed Feb 18, 2009 12:35 pm
Posts: 5
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Hi Robin

Thanks so much for your reply. Yes I do live in England and I will get in touch with the society. Just nice to know there are people out there who understand.


Fri Feb 20, 2009 5:13 am
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Joined: Wed Feb 18, 2009 12:35 pm
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[Hi Irene

Thanks for reply. As I said to Robin Im just glad there are people out that that will listen and understand.

regards

Lorraine


Fri Feb 20, 2009 5:16 am
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Joined: Wed Feb 18, 2009 12:35 pm
Posts: 5
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[Hi Diane

Thanks so much for that. So sorry to hear about your mum, may she rest in peace. As you say, it doesn't matter how old they are, they are still your parents and deserve the best.

Will let you know what happens.

kind regards


Lorraine


Fri Feb 20, 2009 5:20 am
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Joined: Wed Feb 18, 2009 12:35 pm
Posts: 5
Post Re: Greetings from across the Pond, Lorraine
Dear Manymoons.

Thanks for that.

Oh how true!!!!!!!!!!!!

many thanks

Lorraine


Fri Feb 20, 2009 8:15 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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MM....How perfectly described! We do need to send you to Washington to "lay it on them and tell it like it is!" :)

Dianne

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Dianne C.


Fri Feb 20, 2009 10:37 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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MM,

I will send you an email regarding this.

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Dianne C.


Fri Feb 20, 2009 7:24 pm
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Joined: Thu Feb 26, 2009 10:35 am
Posts: 8
Post I feel your frustration
It is frustrating dealing with doctors. My mother-in-law has a primary care doctor that I dispise. Last year, she was having scary hallucinations that were coming out of her tv and becoming violent to her. When I mentioned this to her doctor, she brushed it off like it was a normal activity for an 89 year old person to have. A month later, she landed in the psychiatric unit of the local hospital, baker acted in there. The psychiatrist put her on abilify that helped her mind but deteriorated her body. Her primary care physician insisted she go off of it. Then last week, she had a relapse. 98 is a long and good life. my own mother died when she was my age, 60. I never got to know her. I'm grateful we've had MIL so long, She still lives alone and takes care of herself and I love her. We've only just begun this journey. Carol


Thu Feb 26, 2009 2:14 pm
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Joined: Wed Feb 25, 2009 5:28 am
Posts: 45
Location: New Hampshire/Somerset UK
Post Re: I feel your frustration
Hi, Carol. I live in the UK (although my Dad with LBD is in the U.S.) I noticed some lucky folks on here have managed handsomely in the "postcode lottery" in getting great support for in-home care for their LO's. I don't know how you go about such things in the UK, but you should dig in and insist that your MIL gets a proper diagnosis and proper medication. My Dad bought some quality time going on aricept, but I'm not sure if NICE is up-to-date enough to allow its prescription for LBD, where it may actually do some good. It is utterly inhumane to make your MIL suffer like this, in my humble opinion. grrrr. And how sad to lose your own Mum so young (at least by today's standards... 60 is the new 50; 90 is the new 80 etc.)
cstearns wrote:
It is frustrating dealing with doctors. My mother-in-law has a primary care doctor that I dispise. Last year, she was having scary hallucinations that were coming out of her tv and becoming violent to her. When I mentioned this to her doctor, she brushed it off like it was a normal activity for an 89 year old person to have. A month later, she landed in the psychiatric unit of the local hospital, baker acted in there. The psychiatrist put her on abilify that helped her mind but deteriorated her body. Her primary care physician insisted she go off of it. Then last week, she had a relapse. 98 is a long and good life. my own mother died when she was my age, 60. I never got to know her. I'm grateful we've had MIL so long, She still lives alone and takes care of herself and I love her. We've only just begun this journey. Carol


Thu Feb 26, 2009 2:37 pm
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