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.

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.

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 !

It's definitely a cruel and horrible disease. It's especially hard to watch the drastic personality change.

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.

I hope things settle down for your dad !

I'm so sorry. I hope there is some help discovered for your dad. Lynn

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.

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.

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

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.