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 Cruel cruel humiliating disease 
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Joined: Mon Apr 08, 2013 9:37 pm
Posts: 7
Location: Oxfordshire, UK
Post Cruel cruel humiliating disease
My brain is struggling to accept the disgusting situation that this horrible disease has put my dear father in. For better or for worse, the care home he is currently in, makes available online to family the daily reports written by the nurses. It makes for harrowing reading but every day I log in to see if by any slim chance the situation might have improved. Every day I get a new tale of humiliation and sorrow. My father walking up and down the corridor semi naked (only a tshirt on); my father swearing, spitting, punching, kicking, biting, as 5 nurses try to hold him down to wipe his bottom; my father trying to undress other patients or hit them on the head with the nearest heavy object; my father emptying the contents of his room into the hall at 1am; my father with bruises and bandages from the restraint required to look after him; my father eating tissues...
I would never have believed people were allowed to live in these conditions in western society in the 21st century.... There has got to be another way.

_________________
Daughter of 75 yo Dad diagnosed with DLB in 2011 but suffering serious symptoms since 2009, and minor symptoms much longer, currently in private nursing home, after being removed from home with wife of 40 years Feb 2013, due to complex behavioural issues.


Sun Apr 14, 2013 2:31 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Cruel cruel humiliating disease
Your father sounds a lot like my husband in terms of Lewy behavior. However, as my husband is now very debilitated he is less capable of doing harm. As I believe I mentioned earlier, Seroquel made him manageable. Years ago, when my husband was in a short-term rehab/nursing facility, he also paraded the halls naked from the waist down, his catheter flapping in the breeze and entered female residents' rooms--through no fault of his own but because he was confused!--and so they said he would need alternative placement. Even in his current SNF, he has kicked, punched and bitten staff members. Liability for the safety of other residents and the staff will require that your father receive the treatment he needs or they will not keep him. Put this issue squarely in the hands of his neurologist.

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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 Apr 14, 2013 4:14 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Cruel cruel humiliating disease
Dear Puffinsheck,

This is indeed a cruel disease, there is nothing pleasant about it but I have to agree with Pat , perhaps looking at ways of calming some of his behaviors might be a help to all, I am sure your Dad never wanted to be this way in his life and he can't help what this illness is doing to him. I was married to one of the kindest man I ever met and when he was sick with this disease it stole his mind and body and the best I could do was keep his dignity for him, yes we turned to medication but knowing he would never want to behave like this it seemed the only logical solution for us ! As the disease progressed many of the behaviors calmed down, I believe many of their behaviors are fear, I don't know how I would feel if 5 people were grabbing at me at one time not understanding what they were doing. Sometimes we have to try and look at it through their eyes !

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Irene Selak


Sun Apr 14, 2013 5:37 pm
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Joined: Fri Apr 05, 2013 6:19 pm
Posts: 19
Location: Maryland
Post Re: Cruel cruel humiliating disease
It's definitely a cruel and horrible disease. It's especially hard to watch the drastic personality change.

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My mom (83 years old) was diagnosed with LBD and Vascular Dementia. She passed away in February of 2012.


Sun Apr 14, 2013 9:22 pm
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Joined: Mon Apr 08, 2013 9:37 pm
Posts: 7
Location: Oxfordshire, UK
Post Re: Cruel cruel humiliating disease
We are very lucky that on Friday, in a meeting with all the parties responsible for my day's care, the care home management confirmed they are happy to continue looking after my dad while we try to find the right medical solution. They seem to be used to caring for complex cases. We are still not attempting anti psychotics. The dr decided to try and reduce some of the other medication first. I guess it makes sense to play with existing stuff first.

_________________
Daughter of 75 yo Dad diagnosed with DLB in 2011 but suffering serious symptoms since 2009, and minor symptoms much longer, currently in private nursing home, after being removed from home with wife of 40 years Feb 2013, due to complex behavioural issues.


Mon Apr 15, 2013 2:32 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Cruel cruel humiliating disease
I hope things settle down for your dad !

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Irene Selak


Mon Apr 15, 2013 10:59 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Cruel cruel humiliating disease
I'm so sorry. I hope there is some help discovered for your dad. 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.


Tue Apr 16, 2013 9:33 pm
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Cruel cruel humiliating disease
God bless. It definitely does make sense to review the existing meds first. Make sure you have a copy and perhaps a timeline of what you've seen or experienced. Even tho seroquel was bad for Ted back in 2009, it helped in his last year and a half because of the proper titration of the doseage & where he was at in the disease. Take care & take heart that the facility has given you that reassurance. It is a disease that needs a lot of support by many & takes constant vigilance in following it's twists and turns. Even though it is painful, I think it is a good thing they're sharing those notes with you. I understand how tough it is to read them.


Sat Apr 20, 2013 7:38 am
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Joined: Mon Apr 08, 2013 9:37 pm
Posts: 7
Location: Oxfordshire, UK
Post Re: Cruel cruel humiliating disease
Sadly, a week after being given assurance that the care home would keep him, my father was yet again expelled and is back in the psychiatric ward that was so damaging for him in the first place. Turns out he was given dioxipan or the likes (against my mother's warnings) and he woke up confused in the night, ended up in another patient's room, and was found sitting on the bed with the other man under him and the covers.... No harm done but potential to have been. It was immediate expelling for him. We are now suspecting he has been suffering from undiagnosed delirium and are hoping to get him off all meds to see what exactly is the dementia and what was the side effects. Ironically, while we wait for the meds to be reviewed on Thursday, he is taking antibiotics for a wound on his arm and has calmed down massively. So who knows if all the agitation was being caused by an underlying infection that no one spotted.

_________________
Daughter of 75 yo Dad diagnosed with DLB in 2011 but suffering serious symptoms since 2009, and minor symptoms much longer, currently in private nursing home, after being removed from home with wife of 40 years Feb 2013, due to complex behavioural issues.


Tue Apr 23, 2013 4:19 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Cruel cruel humiliating disease
I suspect some of his behavior was coming from the infection that flared up because of skin tear. lets hope that they find the correct combination of drugs and that the y work for him, just in case you haven't seen this page I thought I would include it!


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

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Irene Selak


Tue Apr 23, 2013 4:31 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Cruel cruel humiliating disease
Infection can, and does, cause exacerbations in the disease. Sorry to hear about your dilemma. It can be a challenge keeping our LOs in care facilities.

_________________
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.


Tue Apr 23, 2013 4:32 pm
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Joined: Wed Nov 13, 2013 3:04 pm
Posts: 44
Post Re: Cruel cruel humiliating disease
I feel for you...my Mom is behaving similarly, although is confined to a wheelchair...she is constipated, and being "bad off the charts" right now. Expecting to get expelled any day. No skilled facility will take her. They want to put her in the Geriatric Psych ward...I don't feel it is a safe place...we were there once, and we witnessed a patient severely assault a CNA, blood and all. My mother is very fearful....cries from fear all the time. I would put her there is she could have a sitter all the time, for her safety, but it is not allowed.


Sat Jun 28, 2014 4:25 pm
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 47
Location: Pennsylvania
Post Re: Cruel cruel humiliating disease
denshaw, have you requested a hospice evaluation? It sounds as if your mother would fit the criteria. In dementia cases it is not required to project a 6 month or less prognosis. They have functional limitation criteria they use for evaluation. I wish I had sought their services much earlier than I did. They might have some facilities they contract with that could consider placement for your mom. I too had my mom in geriatric psyche units and did not find them well suited to LBD cases.

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Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Last edited by mdgren on Sat Jun 28, 2014 11:38 pm, edited 1 time in total.



Sat Jun 28, 2014 10:35 pm
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Joined: Sun Mar 30, 2014 5:11 pm
Posts: 92
Location: Hawaii
Post Re: Cruel cruel humiliating disease
I agree, a hospice evaluation is a great idea. I wish I hadn't waited as late as we did with my mother, but she seemed too well to need it! Of course that changed quickly. AnneAAA

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Sat Jun 28, 2014 10:54 pm
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Joined: Thu May 15, 2014 10:41 pm
Posts: 117
Location: Phoenix, AZ
Post Re: Cruel cruel humiliating disease
I want to echo what Marian and Anne both said - we sought help for my Dad sooner than many do, because of my experience a year earlier with my Mom in hospice. What a blessing that we did so! He was in hospice for around 8 months before he passed, and those months were considerably more comfortable for him as a result. They provide a variety of services that significantly alleviate the burden on the facility (or the family, if your LO is still living at home). Also, they alleviate some of your financial costs - oxygen (if required), wheelchair, hospital bed, etc. It's always good to ask for an evaluation, even if it's too early - because you then learn what services are going to be available when your LO is ready for them.

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Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Sat Jun 28, 2014 11:31 pm
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