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 newbie with questions 
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Joined: Thu Apr 17, 2014 10:06 pm
Posts: 16
Post newbie with questions
I believe my father in law has le WY body dementia. He was diagnosed with Parkinson's about seven to eight years ago however his symptoms were not always present. 2&a half years ago he started havingincreased episodes of confusion and memory lapse. I started doing research as I'm a medical assistant and have been trained to do lots of research in the office I used to work in. When I first read about Lewy body dementia, I thought right away that's what he had.but he got better and I didn't research it any further. now 2 years later we have been dealing with much worse symptoms over the past 6 months that led me to research again. He is falling more frequently.he is experiencing more episodes of confusion as well as very vivid dreams he acts out in his sleep. He has episodes of anger that is not something we have seen from him ever. I'm not sure how to go about addressing this with his physicians as they do not seem to be treating him as such. I found a list of medicines to avoid on this site and that seems to be all they give him. The worst episode was about a month and a half ago when he had been started on a new patch for the parking so called Neupro. that day for the most part he was almost bedridden. Could barely raise his arms. Violent tremor. however for the first part of the morning he was very lucid and requested that he speak with every member of the family individually with very personal instructions words of wisdom as at that point he thought he was going to die.by the time some family members arrive around noon this has passed. He was at confused as to why everyone was there and couldn't remember what happened that morning. A few days later he had another episode Elite was different he was scared and wanting to go home and didn't know why people were there. Since for the most part he's been very lucid with moments of confusion. His depth perception is off very much he can't even wear his glasses anymore. now he has walking pneumonia and has a difficult time keeping his upper body strength. I am only the daughter in law trying to give some insight with my medical knowledge. I'm hoping to get more knowledge from this site so that I can help my family. Thank you for any inside support in any way you can give me.


Fri Apr 18, 2014 6:13 pm
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Joined: Thu Apr 17, 2014 10:06 pm
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Post Re: newbie with questions
Sorry, forgot to actually ask a question. I have a 5 yr old who wasn't exactly helping with my post. This emotional fled coaster he is on, is this typical behaviour? How do you handle the confusion? Do you tell him he is home or do you tell him what is saying is true? The hypotension comes and goes. Is that typical? Thanks for listening to my ramblings.


Fri Apr 18, 2014 10:23 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 743
Location: LA
Post Re: newbie with questions
The way you talk about this seems so normal to any of us who have been here for some time. First he needs his medical team to acknowledge the possibility of Lewy Body and treat it as such. The medicines could very well be causing half the problem at this time. Yes, medicines are important but they must be helpful, not what normally helps others with proven diagnosis.

Depth perception being mixed up goes with Lewy Body. I 'm not sure there is much help for that. Blood Pressure reading falling when he stands is not unusual. I found drinking more water made a big difference to help with my husband also the falls were less frequent. As for him not knowing where he is, Even when he is at home, he wants to go home. Yes, that happens. I found different ways to try to make it acceptable but never did trying to convince him that what he saw was wrong. He sees it and cannot understand why you cannot see it also. If he knows he has a problem with these things its easier to just let him know that is something he can see with his super abilities but we mere mortals cannot see it. Maybe him telling you what he sees will help. Denying his thoughts will not work. ;

It this doctor refuses to work with you, then you may need to consider finding one who will. He can be helped with a better possible diagnoses.

I cannot believe how many false truths I answered to and pretended along to keep my husband satisfied. I felt like, "Whatever worked". My aim was not to prove I was right but to keep jim calm and happy as possible.

Maybe when daylight comes, others will be of more help.

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Sat Apr 19, 2014 5:17 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: newbie with questions
While at first I was skeptical, I also found it absolutely necessary to fib to my husband. Answers such as, 'The meeting has been postponed until next month' and 'Your flight was cancelled' would get us through the day. Don't feel guilty about this. You are helping to relieve your LO's anxiety. God bless!

_________________
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.


Sat Apr 19, 2014 1:08 pm
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Joined: Thu Apr 17, 2014 10:06 pm
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Post Re: newbie with questions
Thank you so much for your response. I am trying my best to prepare the family for what I know is to come . It is very difficult when there are so, including my husband, who sees the good days and the problem is gone. Out of sight out of mind I guess. Some believe there is a miracle cure. I have to remind them not to speak harshly to him when he doesn't follow directions. My dear mother in law, whom I love, has a bad habit of constantly talking about things he does wrong like wetting the bed or the floor. He is starting to push her away when he is more at himself. I think these things go back in hismemory file and when he is lucid, he remembers it and feels he is a burden. He tries to be more iindependent at that point and 'reisk of fall is greater because he refuses help. Even tries to go without his walker. Smh. He remembers at times the things he has said he sees that we don't. Won.Dees why he did. It is sad.
I have tried to let the children assist in toileting and bathing, as he is a very religious man and it was hard enough for him to let his daughters do it. Today I was the only one here to help. He was ok with it, but still hard for me. But I will adjust. I have to. It is just a little different taking care of a loved one as your patient instead of a stranger.


Sat Apr 19, 2014 1:55 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: newbie with questions
Quote:
It is just a little different taking care of a loved one as your patient instead of a stranger.
It certainly is!

_________________
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.


Sat Apr 19, 2014 2:01 pm
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Joined: Thu Apr 17, 2014 10:06 pm
Posts: 16
Post Re: newbie with questions
My SIL put an alarm system that senses when he gets up. Sisnce the onset of the pneumonia he has been weak and unsteady. So we follow him everywhere. He hasn't complained but mostly because he has been in bed a lot. He got up and I went I. With him. He got angry with me. Said he can't understand why he cNt get up without us on top of him. I explained to him because he had been unsteady. He looked a little confused nd said he was laying back down. Did I I do the right thing?


Sat Apr 19, 2014 6:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: newbie with questions
Hi - welcome and I'm sorry for the situation you are going through. I think others have given you some good advice, as they have BTDT! As Mockturtle said, anything you can do to reduce your LOs anxiety is what you need to do or say. There are no right answers and not everything works for every person with LBD.

My dad was very obstinate about using a cane at first, then he got the same way about using his walker. For him, I'd have to really lay it on the line because gentle coaching, encouraging, etc. just didn't work with him. So, help getting out of bed, or whatever the dr. and others were suggesting to help him not fall was being ignored. I finally had to have a really tough talk with him.

I told him that neighbors were calling to tell me that he'd fallen and he'd had to call them to pick him up off the floor. I reminded him of several really sketchy situations where it was a wonder he hadn't broken a bone. He didn't know that I knew about those things (this was when he was still living at home by himself.) Then I asked him how happy he thought he'd be in the hospital and then nursing home with a broken leg, hip, arm or a concussion. He agreed that this was likely to happen and he wouldn't like that at all, so he started using his walker and agreed to let me have CGs come in to help him out of bed in the AM and back to bed in the PM.

Once he was in the hospital, rehab center & ALF, only a few weeks after this talk, he was resigned to the fact that he could not do it all by himself anymore. But, it took a really catastrophic event from which he did not regain many of the abilities he'd had only a few weeks before.

The biggest piece of advice I could give you in your situation is "don't argue, don't try to correct" and encourage others to do the same. Your LO is not in his right mind, LBD has taken over his ability to understand things, make decisions, etc. It is a disease of the brain. No arguing will fix it, so go with the flow and just do the best you can. You may want to encourage others in the family to join the forum or do some reading about LBD so they can handle it better. Good luck, 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 Apr 20, 2014 10:56 am
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Joined: Thu Apr 17, 2014 10:06 pm
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Post Re: newbie with questions
Thank you all. Now the pneumonia is worsened. His O2 has dropped to 81% and then it came back up to 93 he was extremely agitated and angry.a state even his oldest son 60 had only seen twice ever. He wanted to go home and wanted to know why no one would take him. I called PcP and he and I agreed ER BY AMBULANCE. When we to LO what needed to be done and he might die if we didn't, he said that wouldn't be so bad. He was lucid at that point.
ER did blood work and potassium low, venti mask O2 brought says up only with it. Gonna keep him a few days. PCP PUT him on Levaquin, okd him to take zyrtec or claritin. All of these things are no no from what I read. They are talking about doing PT while he is inpatients but I really am not sure this is going to be beneficial as it depends day to day how his brain is functioning as to his daily abilities. They also have him seeing a primary physician who likes to ask "what do you think we should do?"
Just not sure what I can do here. I don't know how to make other LO s see the importance of pursuing this correct diagnosis. Thanks for listening to my ramblings.


Sun Apr 20, 2014 9:32 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 273
Post Re: newbie with questions
Welcome to the forum! It sounds like printing off the list of symptoms and diagnosis pages from the main LBDA.org home page and taking them to the attending doctor at the hospital might be a way to get the conversation with the doctor started. It was a Geriatric Neurologist that finally diagnosed my mother with Lewy Body. And that was after many many hospital trips. But they do have the resources in the hospital so that would be a great place to get people looking at LBD as a possible diagnosis and the repercussions of not diagnosing it. Hang in there!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Mon Apr 21, 2014 12:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: newbie with questions
Does your family know what is in his advanced directive, or even if he has one? If he doesn't have one it might be a good idea to have the discussion about one when he is lucid, and get him to sign it. It's a difficult but extremely important conversation and document to have. That may help guide you with future "events."
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 Apr 21, 2014 4:44 pm
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Joined: Thu Apr 17, 2014 10:06 pm
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Post Re: newbie with questions
He has told us what he wants but no DNR SIGNED. At this point I'm not sure it will be valid considering the current state.


Mon Apr 21, 2014 7:10 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: newbie with questions
DNRs and ADs are very different and both important documents. If he is having some lucid times and you can convince his atty. that he has lucid times, you can have him sign legal documents then. There was something I had to get my dad to sign so I waited till a day where he seemed his old self, had several people witness his signature and talk with him then so there'd be no question that he was of sound mind when he signed the document. Luckily he'd taken care of his will, AD & DNR dozens of years earlier, but if I'd had to, I'd have done the same thing with those if he didn't already have them. There will be a time when that's not an option so you may want to check on all of the important legal documents he needs. Good luck, 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 Apr 21, 2014 8:49 pm
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Joined: Thu Apr 17, 2014 10:06 pm
Posts: 16
Post Re: newbie with questions
He now has full blown pneumonia in both lungs all lobes and has actually worsened since admitting him on Sunday.. On 24 hr O2. Potassium is low. And has dropped. He sat up in a chair today and carried on conversation s but about things from the car past or things we can't see. He owned chicken houses for 50 years. My sister in law worked around the hospital room all night last night trying to please him. Tonite I think he is having mini strokes. Tremors come and go but are whole body when present. I am afraid this is a setback we may not come back from.


Tue Apr 22, 2014 7:43 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: newbie with questions
I'm so sorry! :cry:

_________________
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.


Wed Apr 23, 2014 12:22 am
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