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 Newbie with LBD mother 
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Joined: Mon Feb 15, 2010 9:06 am
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Post Newbie with LBD mother
Greetings. About 2-1/2 years ago my 53-yr-old brother died from a massive heart attack. Soon after that my mother started showing signs of rapidly developing MCI (at which timed she was prescribed Namenda) but which then rapidly transformed into visual hallucinations. My mom's case is somewhat unique because she also suffers from wet AMD and for a time had the types of hallucinations that are typical of a related disease that AMD sufferers get, Charles Bonnet Syndrome. She had been on Paxil for some time prior to all of the above. We tried Lyrica because some CBS patients' hallucinations lessen under this course of treatment.

However, she continued to decline and her hallucinations developed into full-fledged dementia, including paranoia and feelings that my father was having an affair, that her dog was dead, etc. She was then given Risperdal, which exacerbated her condition and made her aggressive and violent. Her antipsychotic was changed to Seroquel and she was started on Aricept, as well. This seemed to be a better treatment for her, but induced an incredible somnolence and she seemed to sleep constantly.

At this time my wife and I talked my parents into moving into an apartment in a retirement home with rehab center and mental health care facility that was considerably closer to us (13 mi) than where they lived before (roughly an hour and a half away by car) so that we could help my father w/ the caregiving. Not long after they moved in, my mother's paranoia and delusions got worse, culminating with her leaving the apartment in the middle of the night because she was looking for her dog (who she thought was dead, altho the dog was in the apartment all along). This scared the staff of the retirement village and they strongly suggested that we send my mom to a mental health specialty care center in a nearby hospital. I'm sure you know the type - this one had a ward with a euphemistic name, "Bridges." Long story short, it was a warehousing area where a geriatric psychiatrist evaluated her once and simply doubled all her meds. They also did some pretty underhanded things - told us my mom's potassium levels were "dangerously low," although they didn't do an EKG. Also told us that my mom had a URI, but never treated it, either. At this point my wife and I were pretty sure she was a good candidate for LBD, so I campaigned for them to lower rather than raise meds. They wouldn't listen and, because of some other problems in the unit, we eventually took her out.

For a few days, my mother was actually a little better (at this time she would swing back and forth, lucid for a while and wildly delusional for a while), but then declined even further. She had serious delusions and asked my father to take them back "home." He did. Of course, that didn't help, her decline was even more pronounced, she cried for hours at a time, became incontinent and had Parkinsonism symptoms, so my dad wasn't really able to care for her. I would get calls from my mother at all hours of the day and night asking if I would "take her home." We were very worried about my father's health and urged that he find a mental health care facility for her. Eventually, she became aggressive and violent enough that she had to be shipped off to a different hospital mental health care unit, where we got a little better treatment. At that point she was still on Seroquel and other previously mentioned meds. At that time I was able to observe her while asleep and she certainly had REM sleep behavior disorder. Still, my mother seemed to respond better to that environment and the staff seemed a little more competent. We met w/ the director of the unit and I asked that they try weaning her off the seroquel and anti-depressants just to see what would happen. They did try that, but along the way added a mood stabilizer (Depakote) to help her w/ the mood swings. This (or cessation of the Seroquel) helped for a while and she went back to their home. Eventually, however, her motor problems, incontinence, and dementia were too much for my father and we found a retirement community closer to them with a three-stage mental health care facility. She was placed in the intermediate level facility, but her transition was very bad. She slept constantly and, when she was not sleeping, cried constantly. She was barely able to talk and very hard to understand. On top of that, she wasn't eating. I should mention that the staff seemed to be very hands off. They monitored her eating, but didn't seem too interested in actively dealing with it. I ended up buying sandwiches and milkshakes and almost forcing them down her. Her parkinsonism worsened by the day. Of course, this place is about 50mi from where I live, so it is difficult to work and get up there more than once or twice a week. My mother also fell a couple of times because of her motor affect. Eventually, the staff acknowledged that her "transition" wasn't working, and sent her back to the second hospital's unit, where this time they basically did nothing despite my admonitions that they titrate all [non-working] meds back and start anew. They responded by doubling the dose of Depakote and then sent my mother back to the advanced mental care unit where she is now. Other than having even worse motor affect, she is unchanged, crying constantly when awake. She can barely enunciate words and loses train of thought w/in seconds after starting a sentence. At this point she is receiving Aricept 10mg, 2x Depakote 500mg, 2x Namenda 10mg, Lexapro 20mg, Remeron 15mg. Piles of antidepressants which appear to be doing nothing. At this point her biggest problem in quality of life is that she is sad and crying all waking hours and her motor functions are extremely poor - she basically can't walk by herself, nor can she feed herself.

A little bit about me. I'm a graduate-trained neuroscientist and, although my specialization is visual transduction and adaptation, I'm familiar with most aspects of neural function, certainly the cellular and molecular aspects. Over these two years I have been introduced to the state of geriatric psychiatric care and treatment for age-related dementias and, frankly, I have not been impressed. As I have read in these forums, there seems to be a pervasive attitude that "there's little we can do so get used to it." In addition, the actual time spent by physicians on dementia patients is pathetically short.

Jim Clack

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James Clack


Sat Feb 20, 2010 9:31 am
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I agree with your assessment. There seems to be some interest in research but precious little interest in evaluation and treatment, other than in the vast array of pharmaceuticals inflicted on our loved ones. As I have stated in other posts, I see dementia as a monumental global health problem which will worsen in coming years. Who will care for the millions of baby-boomers destined to develop these dreadful diseases? Will these people be warehoused or will even that be unaffordable? Will future planners devise a 'final solution'? It does concern me.

Welcome to the forum. I empathize with your situation and I thank you for your insightful post. --Pat


Sat Feb 20, 2010 10:35 am
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Jim,
Wecome to the LBDA forums and wow, your statements certtainly hit home with many of the caregivers just on nthis forum, I also worry about our future. As to the research I think it is great but alos slow moving and the problems you are speaking of are here and now!
Feel free to post here as you feel the need and I only ask that as you try to stay in the correct areas that fit your questions or statement, this also helps with replies from other forum members.

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Irene Selak


Sat Feb 20, 2010 10:49 am
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James,

Sorry you've had to join us here.

Can you find a good geriatric psychiatrist near your mother? It seems that her medication regimen has not been figured out. Sounds like the focus should be on a reduction of your mother's crying. Both Lexapro and Remeron are anti-depressants. If they are working, can the dose be increased?

What about hospice? In fact, they may be better-placed to focus on your mother's quality of life than a care facility.

Robin


Sat Feb 20, 2010 11:40 am
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We've tried several geriatric psychiatrists and neurologists. None have really addressed her problems adequately. This includes the Indiana U School of Med.

What would hospice be able to do that previous parties could not?

Jim

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James Clack


Sat Feb 20, 2010 12:14 pm
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Hospice may be better-placed to focus on your mother's quality of life than a care facility. I encourage you to explore this option directly with a hospice organization recommended by the care facility (hopefully it's not the same company). Let them determine if your mother qualifies and say what they can (and cannot) do.


Sat Feb 20, 2010 2:21 pm
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Welcome Jim, and I hope you are soon able to find something to make the situation at least a little better. This is such a tough disease to try to deal with. For your own sake, I hope you keep participating here, since there are so many dealing with similar situations. Lynn


Sat Feb 20, 2010 9:43 pm
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Dear Jim ~ I am not very good at writing but will try... Your mom sounds so much like my husband's mother. His mother lives in a different state which doesn't do much "diagnosing" but we have been told she has dementia. However, my husband was diagnosed in 2006 with Early Cortical Lewy Body Disease at UCLA's Alzheimer's Research Center. What I am trying to say is I believe they both have the same disease in fact there are others in his family with similar symptoms/problems. My husband has been helped with Prozac, Buspar, Namenda and Exelon. His psychiatrist tried changing him to Effexor early in 2006 and it made matters much worse so he went back to the Prozac which he has been on since 1989 [also the Buspar]. So far he is only to the MCI point. He is 67 yo and his mom is 88.

It has been a very rough road getting him diagnosed and helped. My husband's father was not able to take care of my husband's mother and was not willing to let anyone come into the home to help. Finally he had another heart attack so a sister placed them in assisted living where they are getting some help. Mom sleeps all the time and dad gripes all the time from what we are told. At least mom is no longer laying in puddles of urine... Have you been able to get your mom to an Alzheimer's Research Center to be fully evaluated? My heart goes out to you and your family! Is this the price we must pay for living long lives?
Sincerely,
Roxanne


Mon Feb 22, 2010 2:41 pm
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Interesting you should mention about the price we pay for living long lives. My dr. told me that at least 50% of people over 85 will develop some form of dementia. Makes me really think of what I will do if I have a major health issue in the coming years. I absolutely do not want to live a long life it is going to have no quality. Every day I feel more strongly about it. The medical community has done so much to keep people alive for a long time, and I think we all need to seriously think about the long term results of all these "heroic" interventions for everyone, no matter where they are in life or what their whole health situation is. Lynn


Mon Feb 22, 2010 6:53 pm
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I agree Lynn... When our bodies outlive our brains, I wonder what is left??? Someone else on this forum mentioned "warehousing" those who are no longer able to care for themselves, and it is a very frightening prospect. I've seen the "warehousing" concept mentioned in "Brain Longevity" by Dr. Khalsa...


Mon Feb 22, 2010 7:33 pm
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Roxanne - have you seen my post under Treatments titled "Slow Medicine"? If not, you might want to check it out sometime. Lynn


Mon Feb 22, 2010 7:52 pm
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I know, if it happens to me, I want to find the nearest ice floe!


Mon Feb 22, 2010 8:12 pm
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That what my husband says he's going to do with me - put me on an ice floe! I think a strong margarita with all leftover meds mixed in would be better! I have a pact with several girlfriends to let each other know "when it is time" in case we're each not cognizant enough to know when it is time.


Mon Feb 22, 2010 8:25 pm
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Post slow medicine
Lynn ~ Yes, I saw your post about Slow Medicine and it sure makes sense!
Thanks so much,
Roxanne


Tue Feb 23, 2010 6:08 pm
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Post PAXIL
Jim ~ I am wondering if PAXIL helped your mom at one time before all the above started, would it be worth another try? Has she been evaluated at one of the National Alzheimer's Research Centers?
Roxanne


Tue Feb 23, 2010 6:13 pm
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