My mom, who has not yet been diagnosed, is having extreme hallucinations and delusions. She isn't violent, but I can't keep her in the house. She hasn't slept for more than a couple of hours in 4 days. We are waiting to see a new neuro, so I wonder what I should do in the mean time? I afraid if I take her to the hospital, she will end up in a psychiatric facility. I am concerned for her safety though. Any advice?

hi.. i know how scary those can be... can you call the nuero office and explain what is happening and ask them if you can get on an emergency basis.. just to get soemthing to calm her down?? i found with hubby, the less sleep he gets, the worse the hallucinations are.. so hopefully they can see her just to help her relax.. please make sure you see the meds to stay away from, before giving ...
there is a list on her but sorry not sure exactly where..

good luck.. we are thinking of you and her..
cindi

Keeping things as calm as possible, will help and yes I would call to see if that appointment can't be moved up and explain the reason you don''t want to go to an ER with her what your fears are.

Will any of your mother's MDs (primary care physicians?) prescribe any of the medications recommended by Dr. Boeve in his 2004 "Continuum" paper for the treatment of hallucinations? First line treatment is an AChEI (Aricept, Exelon, Razadyne). I would think even a PCP would prescribe that medication. Next would be Namenda. Next would be the atypical antipsychotics, such as Seroquel. But I wouldn't go there (antipsychotics) until you've tried an AChEI and/or Namenda.

There's a study posted here that indicates Namenda is helpful in DLB but not PDD.

I have nothing to offer to all the good advice posted except I do think Aricept and Namenda held off my Mom's hallucinations in the early to mid stages. She is no longer able to move without assistance but is once again experiencing all that plus agitation -I do know the feeling you are going through, it is awful to witness. I was able to get an increase in her Aricept dose and Seroquel over the phone from her Dr. We too sometimes have luck with having another person call and talk to Mom on the phone or a change of scenery. However when it gets going full blast and for such a long time only meds seem to break the cycle for her. It is so frustrating -but keep trying to get through to her Dr. with the urgency of this - I too feel the emergency room route is not especially productive.

I spoke with the neurology office and they were not able to see her sooner, but they are placing a call to her PCP to advise them on what meds the neurologist recommends. Hopefully the PCP will call something in for her shortly. How long should I expect it to take for the hallucinations to improve? (I guess that would depend on what meds are called in.)

Thank you all for your advice and support!

Amanda,
I am glad you were able to get some results from the Neuro's office, at least they are wiling to work with the PCP, Good Luck !

Don't wait until the end of the day if you haven't heard anything yet, sometimes we have to make reminders, its Fri and if nothing happns you will be stuck all weekend !

Amanda,
Please refer to Dr. Brad Boeve's "Continuum" paper from 2004. You can find it on lbda.org.
Robin

I just wanted to let you all know that the dr called in Aricept and Klonopin for sleep. Thank you all for the input and support!

Goodness knows I hope it helps !

We have noticed with Mom that pain and infections (especially a UTI) will really set her off. Delusions and hallucinations are pretty normal for her but when shes sick its much worse. I would also recommend a check up by her Doctor also.

My mom had one good night's sleep and a few lucid hours yesterday, but not much improvement otherwise. We are going to see her PCP because on top of this her legs and feet are very swollen. I'm concerned that there may be something going on with either her heart or kidney's.

Thank you all.

My husband developed swollen legs and feet in 2008 when he developed post-renal failure due to inability to empty his bladder--just dribbling. This causes obstruction in the kidneys. He has had an indwelling catheter ever since and no edema. Sometimes PD or LBD can cause what is called a 'neurogenic bladder'. Do you know if your mother's urinary output is adequate?

She seems to have normal output, but I can't be certain. I thought of getting a urine collector and putting on the toilet so I can get a more acurate measurement. She won't drink water and only wants soda, which I'm sure doesn't help. Soda is the one thing she really loves and I hate to take it away from her too. I did get her to drink some cranberry juice mixed with a little water and apple juice though.