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 Don't Know Where to Begin 
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Joined: Mon Nov 01, 2010 2:50 pm
Posts: 15
Post Don't Know Where to Begin
Hello all! I have been lurking here reading all the different topics of symptoms and behaviors. My Mom has been diagnosed with Early to Mid Dementia/Alzheimers but I truly believe she has LBD and the Dr is just plain wrong. My Mom has battled depression on and off for the last 20 years or so. In 1998 she had to retire from her job running a business office in our school district because she couldn't manage her depression and anxiety and learn new tasks thrown at her at work. She retired on a mental disability. From that point on she battled her depression on and off with medication and even shock treatment. It would be a temporary fix, and as the years went on there was less time in between that she was better. She would mainly withdraw from all social activities, not make phone calls, just sit at home and watch tv. she would nap throughout the day. The psychiatrist she went to would just experiment with different combinations of medications. She resisted talk therapy. in 2008 she was preparing to go to her high school reunion, she had just come out of a long bout of depression, we though she was better..she was desiring to do so many things...on her way to the reunion she got lost, had to call my dad to come find her..she pulled over to use some random persons bathroom in their home...most normal people would not do such a thing, you would seek out a public bathroom. She made it to reunion, later got lost on the way home. This began her spiral downward, a rapid decline over just days of bizarre behavior, she could not remember how to use the bathroom, what came next in daily to button a shirt, father had to do everything for her. She also began echoing what we were saying..we brought her to the emergency room, we thought she had a stroke. she had some involuntary movements in her feet , shaky hands and squinting of her eyes. They suggested a psych dad was so besides himself and refused to accept it was psychiatric we were convinced it was physical. well in the end to make a long story short they treated her with psych meds, haldol, lithium anti depressants and sent her home. that was in May/ December she needed to go back in the hospital..she could not sit still, like OCD symptoms, couldn't sleep couldnt sit she was in for two or three weeks, she was hallucinating...delusional thought she was being held prisoner etc...she eventually came home again with the psychatropic meds....we got to June and she again needed to be hospitalized. They were experimenting with an MAOI medication and needed to take her off her OCD medication..when that happened she began to not be able to function...she could hardly walk, again forgetting how to do daily living functions, no executive functioning at all...she was in the hospital for 7 weeks, they though she had Neuroleptic Malignancy Syndrome...also thought she had some Parkinson attributes, they put her on Parkinsons medication..I think she almost died...they took her off all meds cold turkey...she was so out of her mind, she was talking to dead people seeing children and babies that werent there, people that werent was horrific to see her state...they eventually brought her back by putting her back on the OCD medication along with a schizophrenia medication and ativan...she came home and for two years has just sat in the house, no socialness, only watching Law and Order or medical shows...she does nothing for herself, no hygiene, has everything done for her..has become incontinent most of the June of this year...she began to leave the house unattended, she is very off balance, is very weak but managed to leave twice on her own. She had also began to ask to be taken "home" and day after day that got worse and worse, my dad took to driving her around town and then back home, till one day she refused to get out of the car we had to bring her to the ER, they admitted her...her only explanation was that her and my father had an argument, she doesn't remember that she tried to leave...but yet she almost convinced the ER dr that she was fit to go back home the next day...we were panicked, what if she didn't get out of car again...well after a week and a half the dr released her..but explained to us that she had early to mid dementia/alzheimers..he basically put her in the hospital as respite for my dad. My Dad has needed to increase the aide hours in the house so he is able to leave because he will not leave her unattended. But he has not succomb to 24/7 care yet. She still does not take care of herself, she needs to be washed and made to brush her teeth, if left on her own she would literally sleep all day, they get her up for meals but if they didn't force her she would stay in bed all day. She has one really good aide who makes her get up and sit in the chair, she watches Army wives and that is about it...she sleeps only on her back so she is starting to get a pressure sore..she is eating probably half of what is given to her..she occassionally chokes(and my father thinks she has suddenly developed an allergy to certain foods--Hello? Denial?). She is very off balance when she walks, kind of shuffling gait...she has a constant runny nose...mostly sits with her eyes closed. She fluctuates with confusion...sometimes thinking people are in the house..wanting to "go home". all through the summer she was pretty confused, from 3pm on till she went to dad would argue with her that she is home...she wouldn't believe him...the last three weeks that has stopped. He really good aide was out having surgery, during that time, the women that filled in weren't as pressing to get her out of bed, she spent most days laying in bed. As far as dreams go, as I have been reading is a huge symptom..I recall her saying years ago that she would have such vivid bad dreams, she would take xanax to be able to sleep.

My Dad knows that she has declined...when she declines she declines bad...but when she has good days, which aren't really good at all but she is calm and not confused(or at least doesn't appear to be) he says that she has been "better", which makes me fear he is back in denial. I guess I'm looking for anyones opinion if you all think she sounds like she has many thinks I read on here she has or does..I really feal the dr has it wrong...especially when he says early to mid dementia...she is so incontinent and sometimes so confused...but yet its not always her memory..she can still remember stuff that you would think she shouldn't...she knows who all of us are still...but its more her behavior and the apathy that are her hugest problems...just need some one to tell me I'm not crazy in thinking that she probably has this. HELP!!!

Wed Oct 05, 2011 10:12 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Don't Know Where to Begin
Sorry to hear about all that your mom has gone through over the last 20 years. It can't be easy for anyone in your family.

Have you looked at the diagnostic criteria for LBD? (See Does your mother have progressive dementia? I wasn't sure from reading your post. It sounds like she has parkinsonism and fluctuating cognition. Does she have hallucinations that can't be explained by medication?

The diagnostic accuracy for LBD is very poor (less than 50%). So I think the key is to try to have her treated as if she has LBD but not call it that. What does that mean? Being very cautious of antipsychotics and anti-Parkinson's medications.

Wed Oct 05, 2011 12:22 pm

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Don't Know Where to Begin
Hi, Tara. It sounds like you've been through a lot, along with your mother.

Though I wouldn't encourage you to jump to any conclusions, yet, I do think that going on an assumption of LBD - just so far as meds are concerned - is wise. Cautions taken regarding antipsychotics won't hurt anyone if the diagnosis is otherwise.

Your first few paragraphs sound so much like my sister that I want to reach out and hug you. My sister isn't suffering from dementia yet, though I do know that there is a dementia associated directly with depression. Some thirty years ago, her first diagnosis was manic and chronic depression. There have been many other diagnosis since, ending up at bipolar with PTSD now. So I want to ask you a couple of questions first.

What state are you in? I believe that the most sane care my sister received was through the U of Iowa. They also sent her to a private psych hospital in New Orleans that was a huge help. One thing my sister's experience has taught me is that psychiatry is as much art as science and a diagnosis depends on the practitioner as much as the patient.

Are you sure that you, your dad, and your mom's doctor are aware of all medications, including herbal, that you mom takes? My sister had a huge addiction to prescription meds, followed by overindulgence in herbal remedies. Some of the things you describe, yes even hallucinations and delusions, can be caused by medications, vitamins and herbals, if mixed or overindulged. And, yes, I know she has your dad and an aid, but severe depression and it's attendant issues can also add up to a very tricky patient who can manage to do what she wants to behind everyone's back.

Neuroleptic Malignancy, huh. I'm curious as to whether she has been tested for neuropathy, which can affect both motor and sensory nerve and cause unexplained movement.

The hospital my sister went to in New Orleans added up to a 3 month stay. They took her off all meds, provided individual counseling, groups and even an exercise program, as they tried different medication combinations. Even they said that it sometimes takes two or three times back to the hospital before real progress is made, though. It really is an art. Perhaps such a hospital would be good for your Mom. I don't think that finances are a huge issue, as my sister and her husband are fairly low income.

But, again, I was recently informed of the dementia that is associated with depression. I've wondered since if my sister is there or approaching it. You already know, though, that figuring these things out takes a long time. Some times they never are. Try to slow your thoughts and worries down to a day by day approach. Look for small wins. There are unlikely to be many big ones.

From the experiences my nephews have told me about, I know that it isn't easy being raised by someone with dementia. I give you a lot of credit for still caring about and for your mom. I know it can be challenging.

Interesting note: My sister is also addicted to Law and Order in all of its forms. She can watch reruns all day. If it's on anywhere, no one else can change the channel. We have, though, seen NCIS edging its way into her heart. I wonder if there is something about depression that makes L & O so attractive. :roll:

These are all just thoughts. Take them or leave them, as you need. But know that we are here when you need us.


Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Wed Oct 05, 2011 1:28 pm

Joined: Mon Nov 01, 2010 2:50 pm
Posts: 15
Post Re: Don't Know Where to Begin
I am ok, just trying to be supportive and visit as much as I can...I am having to learn that I have absolutely no control over her situation, my Dad is her primary caregiver, I try to guide him at times..very frustrating as sometimes men just don't do it right...I watched my Mom take care of my grandmother so there are things he probably should be doing and he's not, he's very stubborn and set in his ways...this was not how he planned his retirement to he has to change his lifestyle over the last several years and I guess he's a bit resentful. But he has aides and he's working on some of the financial planning. But they are very resistant to second opinions and I think this is a big problem. She definately has frontal lobe atrophy, the dr says she has Frontal Lobe Dementia and says its early to mid, but she seems way more advanced than that. The Doctor knows he medication father sticks very close to this...but I have to admit sometimes the way I see the dosing being handled makes me cringe...he sometimes left it out on the table(her morning dose) so she would take it...I told him that he can't leave her with that resposibility...she declined severely from June to now...just the end of May he was still leaving the house and leaving her unattended, till she left the house twice on her own with no one's knowledge till after the fact, she was "looking for him". But she hasn't tried to leave again since maybe end of July...but she gets instances most days where she will ask my dad to take her home. he just changes the subject...but she has so many symptoms, when she walks she kind of leans to one side and almost falls, the dripping runny nose...sleeping so much, just seems different from the symptoms of Alzheimers because she can sometimes fool you and make you think she's Dad often gets fooled, but I think its also that he would love to believe that she would snap out of this. I don't think the medication is causing all of it...I saw her with no medication and she was way worse than she is now...she was totally hallucinatory and delusional...talking to dead people and seeing people who weren't there, not opening her eyes...pulling at the was horrid. In my heart I just really think she has LBD, I have been reading alot of the stuff here in the forums and it sounds so much like her. Just in December the dr changed his tune and was saying he though she had more just psychiatric issues and her brain needed time to recover from all the medication...but she started with these sypmtoms in 2008 and it kind of went unexplained then...they said it was manic depression, but she wasn't a typical depressed person, crying all the time..thoughts of suicide...she just withdrew socially, then she began to not be able to do anything at all for daily living skills, for the last 5 years my Dad was doing every single thing in the house...and she began to neglect her hygiene which I didn't know about for a long time...and also she is incontinent...for a while there she was eating so much that she gained a bunch of she is losing weight again because she doesn't eat as much. You can see that she is losing muscle tone...she hardly walks around. she would sleep or keep her eyes closed all day if you let her...they force her to watch tv...which I don't agree with so much, what she is watching may do more harm than good.

Wed Oct 05, 2011 1:45 pm
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