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 My Dad's Story in Brief 

Are your loved ones hallucinations always seen to one side consistently?
Poll ended at Mon Apr 12, 2010 10:52 am
Always on LO Right. 40%  40%  [ 2 ]
Always on LO Left 0%  0%  [ 0 ]
Always directly ahead 0%  0%  [ 0 ]
No sometimes right, left, anywhere 60%  60%  [ 3 ]
Total votes : 5

 My Dad's Story in Brief 
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Joined: Sat Mar 27, 2010 6:15 am
Posts: 44
Location: USA
Post My Dad's Story in Brief
I found this site after doing a search on Lewy Bodies and have been following it for about a month now.
My dad began having falls about 3+ years ago. He started walking with smaller steps. He had pain in his back and legs. He is 77.
Dad has diabetes and has been on over 15 medications for several years to control his diabetes. But he has always been active, on the go, and loved to tell his wild stories.
He lived about 2 hours from the rest of us and about 2 years ago we started having problems getting hold of him. His phone would be off the hook, or he would not answer so we'd have to try to call a neighbor (he lived in the country alone). Sometimes he would be passed out but usually he would just be very sound asleep or just have the phone off the hook and not know it. We sometimes felt he was doing it for attention because his blood sugar would be okay. But we always used the Diabetes to explain his symptoms.
He never took care of himself. Ate whatever he wanted.
He then had flu symptoms and some anxiety so we took him to the hospital and he was admitted. They diagnosed a brain tumor then the neurologist said NO brain tumor.
They did all kinds of test and the more test they did the more dad was "out of it"
He was out of the hospital for 2 weeks when he got an infection and went into another hospital because he was staying with my brother at the time.
Again as they did test he got more "out of it" They also found no brain tumor.
I took him home from the hospital and stayed with him at his house for 3+ months. This is when I noticed he had some kind of sleep disorder. He motions with his hands during sleep as if actually doing something. Whe he is woken up or if he takes short naps he has a hard time "getting out of the dream" Sometimes it would take me 5 minutes or more to talk him out of it. Then he'd say... "what the h*ll am I talking about?"
I noticed no memory loss, but he had some mild paranoia.
He had directional confusion right was left and left was right. He started to get lost in his own house. (He is also legally blind)
He definately spoke less. But then he'd have a good day and seem like he was better. His directional confusion was gone one morning just like that!
He would see things that were not there and I noticed this was ALWAYS on his RIGHT side - which is the eye that is blind.
I noticed he NEVER sweats even when it is very hot outside, which may be related to all his diabetes medications. ???
Any medication like cold medicines, allergy make him very bad. He gets a blank face, lethargy, white eyes, closed eyes, like it is too much effort to speak or open his eyes.
He went to a nursing home in 2008 by his own decision. He could not see well enough to do his own pills, his depth perception with the small amount of vision he had was very bad. His thinking was still pretty good.
They gave him Haldol at one point and made him much worse.
I am his PMOA and they never tell me when they add medications.
I asked them to but they act as if they own my dad and they will do what is best for him. They put him on 2 allergy meds and an anti-histamine recently on the VERY SAME DAY they started a new alzheimers medication and my dad was completely gone.
I went to check on him because I thought he had a stroke and then I asked to see his medication list and OMG I could not believe they put him on allergy medications. (he has a chronic nose drip)
It took me 5 days to get him off the cold and allergy and within 2 days he
cleared up and is much better. But during that time while he was completely out of it - they put his shoes on him wrong and now for the first time he has diabetic foot ulcers that are not healing and he is in a wheelchair.
If he had not been over medicated and wrongly medicated he himself, would have noticed the shoes on wrong, or the pain, but they had him drugged.
They have him diagnosed as Vascular Dementia. I keep telling them I think he has lewy bodies and not to EVER give him anything new without telling me because he has bad reactions to lots of medications.... but they act like I can't know what I am talking about.
This NH is a very nice place and suppose to be the very best... and we need them AND I don't want to cause too much problems or they will move my dad to the Alz hallway.
I've written a 3 page letter outlining my concerns esp. I am concerned that a doctor would prescribe 3 medications in one day,,, 4 in a two week period - vicodin for pain, Namenda for dementia, an allergy medication, and an anti-histamine.

When he was taken off the two cold allergy med he improved greatly from zombie to alert - but the head nurse on his hallway said she noticed very little change.
He started talking again, he started eating again, the black face and white eyes went away. The change was dramatic... this bothers me a lot that she says there was no change.

His blood test and physical --reading it without knowing all his problems --- you would think he is a very healthy man.
He now has hallucinations -from what I observed always on the RIGHT SIDE (to his right)- of a little girl or a little boy. This is since the medication fiasco. Before the medication fiasco he would maybe see things while we were out driving... like a lake that wasn't there or trees etc.. but I attributed this at the time to his blindness.
He also still has mild paranoia.. People take his shirts, someone took his coat and put it back. With his poor eyesight it was always easy to put this confusion down to partly vision problems.... Sorry this is so long.

Fri Apr 02, 2010 10:52 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
I have never heard anyone say that hallucinations appear on a certain side. You are certainly a close observer.

If at all possible, can you get your 3 page letter down to a 1 page outline of your dad's symptoms? Perhaps you can go through the LBD diagnostic criteria and say which symptoms your dad has of those.

I don't understand this: "I am concerned that a doctor would prescribe 3 medications in one day,,, 4 in a two week period - vicodin for pain, Namenda for dementia, an allergy medication, and an anti-histamine." Are you saying that the MD you will be meeting with has prescribed all of these medication additions to take place on a single day?

LBD is notoriously different to diagnose. The diagnostic accuracy is less than one-third. Confirmed diagnosis is only possible with a post-mortem brain exam. I hope you'll consider brain donation.

Fri Apr 02, 2010 11:07 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Hi Grace - welcome and sorry you have to be here. You are having to deal with a lot, as we all know on this forum.
My 88 yr. old doesn't hallucinate very often (thank goodness) so I didn't respond to your question. I am sure you'll get lots of answers from others though.
We have been experiencing problems with the head nurse at my dad's ALF too - I get my best info. from one of the nurses who reports to her and from his caregivers. She tells me that my dad "cleans his plate" when this family and friends observe that he eats about 2 bites per meal and has been doing that for several months. She told my sister last week that "his pants are too tight" when my sister said how skinny he'd gotten in the last few weeks. Turns out he hadn't been weighed in a while and he'd lost 27 lb. in 6 weeks. I think his BELT was too tight because his pants were actually LOOSE. We have the same thing with meds - even though we've been very clear on the "call us if a dr. wants to add another med" that doesn't happen unless we ask when we check in by phone.
So, it's tough to try to manage this stuff, especially from a distance and when you have your own life to take care of.
It is a tough, challenging, and very complicated disease. I wish you all the best in dealing with it and dealing with the people who care for him. I know what you are going through! Lynn

Fri Apr 02, 2010 11:08 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
My husband has been hallucinating for at least two years but I really don't know if they are restricted to one side or another. I will start observing that, however.

Yes, for a doctor to prescribe several new meds all at once is difficult to understand. How can one assess the response?

Welcome to the forum! We're all here to comfort and support each other and there is a lot of good information, too.


Fri Apr 02, 2010 11:21 am

Joined: Sat Mar 27, 2010 6:15 am
Posts: 44
Location: USA
Lynn - thanks for the post about problems you also have had with a head nurse, that alone makes me feel better.

I appreciate all your responses.

Fri Apr 02, 2010 1:11 pm

Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Hallucinations
Grace, welcome to the forum. On hallucinations, my Mom has them frequently and she also is blind in one eye (left eye). I've never noticed whether she sees them on one side or the other because the ones I observe are when she talks to someone who isn't there and then she addresses that someone as though they were directly in front of her. I hear about the cats and dogs and mice but I haven't actually asked her where they are. I'll pay more attention. I have noticed that when she walks she pulls to the right. If she's going to bump into a wall or something it will be on the right hand side. I have not observed what they call a Lewy Lean.

Fri Apr 02, 2010 1:42 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Welcome and I am glad you decided to join the forum members here, sad what you are going through with the NH but it seems to be occurring more often these days seems like many Facilies are ignoring the POA's, I spoke to a woman the other day who I had been in contact with several weeks ago, she wanted to let me know her husband passed , sad when she called several weeks ago she had her husband in a "private" care home and what was a red flag for me was the woman in charge of the home wanted POA.
Even if we can't care for our loved ones at home for whatever reason we must still remain a strong advocate for them no matter what but these homes are not making it easy.
Visit us often Grace.

Irene Selak

Fri Apr 02, 2010 2:44 pm
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Joined: Sat Mar 28, 2009 6:01 pm
Posts: 101

Welcome to the forum where you can find so much useful information, and where everyone understands what you are dealing with.
My husband is also legally blind due to macular degeneration which he has had for over 10 years. He has almost no central vision but when he has an hallucination, it is usually in front of him but outside, through a window. It's as though the hallucination is coming from the place where he has lost his vision. (For some time his eye doctor attributed his hallucinations to a well-known side effect of macular degeneration called Bonet's syndrome.) So far these visions interest him, but do not seem to disturb him.


Bay Area, CA

Sat Apr 03, 2010 1:43 am

Joined: Sat Mar 27, 2010 6:15 am
Posts: 44
Location: USA
Post Vision Loss Hallucinations
That is interesting because my dad's right eye is the one that is completely blind and that is where he sees the hallucinations. Also his hallucinations do not bother him too much and he does not seem too upset when I tell him they are not there. These daytime fully awake hallucinations are pretty new to him.

They are usually a little boy or little girl similar to relatives. He says they do not interact with them. (he was trying to feed one of the children yogurt one day)
I talk to him about them and ask him questions about what they look like and what they are wearing.

The other day he told me there was a man stacking books, which was new. I went over and stood where he indicated and asked if I was standing near the man. ... and my dad says "well, maybe YOU are not here either" hmmm

Anyway, I really try to make him feel comfortable with this phase he is going thru, the Nursing Home people will start saying right in front of dad "
Your dad saw this, your dad said this, your dad saw that... and I know it
embarrasses my dad.

I just hope I am doing the right thing by talking to him about the hallucinations and asking questions about them. I told him the other day that if he had to create excitement by having hallucinations he should at least conjure up John Wayne to talk to (he loves John Wayne).
He thought that was great.

Sat Apr 03, 2010 2:12 am

Joined: Sat Mar 28, 2009 6:01 pm
Posts: 101

You seem to know just how to handle your Dad, with humor and kindness. When my husband asks if we see what he sees, e.g. a horse in our garden, I tend to say "You see a horse in the garden," and just let him add what he wants, or not. Or I'll ask, "what is the horse doing" and he'll say he doesn't know and lose interest in the subject. Hallucinations are interesting, aren't they? a quirk of the brain.

As for the staff talking about your Dad in his presence, one way to handle it is for you to talk directly to him, and in that way, show the staff that it is what you expect of them. It seems to be a persistent and annoying habit of health workers to talk about their client as if the person isn't in the room. If they have some information they need to tell you, you can ask them to step outside the room to talk. They'll get the idea.


Bay Area, CA

Sat Apr 03, 2010 2:36 am
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