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 Mom In Chico with symptoms.... 
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Joined: Sat Aug 16, 2008 9:40 am
Posts: 6
Location: Northern California
Post Mom In Chico with symptoms....
Hi All, Here is my story...
My mother was diagnosed with Parkinson’s and some age appropriate dementia about 4 years ago. She currently lives at home in Chico Calif. I am the youngest daughter of 6 kids and I manage her care from a distance. I am working to keep her in her home for as long as possible. In Dec. I hired a full time live in care person. In May my mother started hallucinating and becoming very difficult to manage. She had a mild UTI which she was treated for, in the hospital, and released after 2 days. Since then, she has not recovered and the hallucinations of fires, people trying to kill her have continued and gotten worse. We keep looking for the secondary cause when I read about Estelle Getty in the paper and read about Lewy. So now, I think I have found a cause or at least a reason for her behavior. Her Neurologist for what I can tell is doing a great job treating her symptoms but we are still not there yet. he recently started her on Seraquel. Seems to be helping somewhat. But she still gets upset in everyafternoon. I think this forum can help me.
I am thinking of taking her off of her Namenda and or Aricept that she has been on for over a year and I have seen NO benefits. They are expensive and I am trying to cut costs here and there. Anyone have any advise on this?

Sat Aug 16, 2008 8:04 pm
Welcome to the LBDA forums, I am glad that you already find the forums helpful and there is a world of information here, caregiving from a distance is hard but can be done, so do I understand you correctly that your mother hasn't been diagnosed yet with LBD? If not then I would think that is the place to start, LBD is an illness that presents constant changes and by that I mean you get one issue resolved and have to start dealing with another! As to the meds the one drug I would not take away would be the cognitive drugs, if there is any hope for this illness it is them, I know you say that you see no difference but you really don't know what it would be like if she was off them and at that point it is almost to late to restart them. Keep reading and posting here on the forums, you will get suggestions from many and if you have questions just post them in the appropriate areas, often not everyone reads all the areas.

Mon Aug 18, 2008 12:05 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
You might post your question about Aricept and Namenda on the Medications sub-forum so that it can attract attention from people.

Tue Aug 19, 2008 3:03 pm

Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC

First, welcome. I hope you find as much help and support from the LBDA forums as I have.

I'm certainly no expert on pharmaceuticals, but I can tell you about our experience. My mother was taken off the Exelon patch (a drug similar to Aricept) and Namenda when she was in the geriatric psych ward of a hospital. We had certainly never seen any improvement, and once we had started then stopped Namenda because I thought I detected worsening confusion -- though it was hard to determine what was drug related and what was disease. The doctors in the hospital said that at the point she was in the disease, these drugs probably weren't helping anyway.

We saw no deterioration at all after stopping, and her behavior and attitude improved -- which I suspect was related to getting some other drugs straightened out as well. And given that she hates taking pills and will spit them back out (oh, the tricks we've learned about that), the fewer meds, the better.

Is there any drawback to stopping the meds and restarting if you notice a decline? I know it's a difficult call, given that these Alzheimer's type meds are purported to slow progression, not stop or reverse the disease.


Wed Aug 20, 2008 10:26 am
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