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 My mom - a complicated case 
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Joined: Sun Jan 06, 2013 7:37 pm
Posts: 7
Post My mom - a complicated case
This is my first post, but I've been searching and lurking for at least a year. Your stories have all been immensely helpful to me as I try to understand my mother's dementia.

History: She is 72 years old, and suffered a head injury from a fall ice skating when she was in her 20's. When she was in her mid-thirties she began having seizures, some grand mal, but mostly petit mal. It took about 6 years for her to finally be diagnosed with Epilepsy w/ Complex partial seizures (this was late 70's, early 80's). It then took several years for her to find a combination of medications to stop the seizures. Even then, she still had 3 or 4 a year. Throughout this entire period (my childhood) she had a definite mood disorder, untreated, resulting in frequent manic rages. She also had frequent falls, several a year, becoming more frequent in her 50's and 60's. This was also the period where my father died suddenly (I'm an only child).

About 10-12 years ago I remember accompanying her to a discussion of neuropsych testing results at Columbia (I was in my mid-twenties). There was discussion about poor memory (which I had noticed), and that she was a better visual learner and had no trouble on those memory tests. Everything else was deemed normal. A couple years later I got married, had a child, and moved to another state. My mom soon followed. Until then she made several very impulsive decisions, including buying and selling real estate. She also saw a psychiatrist and went on anti-depressants. This dramatically controlled her rage behavior, and low moods.

Road to Diagnosis: In 2005, a year after moving near me, she was 65 and I urged her to get neuro psych testing done. She was foggy and having trouble with making decisions and getting motivated. To me she was just "not right." She was still highly functional. I went to the discussion of the results. Neurologist said she's normal, definitely NO Alzheimer's "so stop worrying" and better mood stabilization, nutrition, and sleep hygiene would do the trick. So I said fine, I'll stop worrying, and figured I was just an over reacting daughter dealing with long-standing family issues.

For the next 5 years we argued about everything. She was more and more unreasonable, made poor judgments, often affecting the well-being and safety of my children. She was combative, would start crying out of the blue, had no desire to engage in a hobby, make a friend, and other than hanging around my house well into the evening she never left her house except to shop. And she shopped a LOT. She also had a return of seizures for a year when neurologists put her on a new medication they thought would erase her seizures completely. This brought on depression and more forgetfulness. I was tired of "crying dementia" when doctors always said she was fine, so I just figured she was a nut, and complained to my friends all the time about my "crazy mom."

In early 2010, 3 weeks after I had my 3rd child, my mom, who I noticed was walking and eating very slowly and had handwriting that was tiny and impossible to read, seemed completely confused by normal charges on her credit card bill. I said that's it, she's not right, and I gotta take over. In February, with a newborn and toddler in tow, I took her to another neurologist and he diagnosed Parkinson's Disease and started her on Sinemet. Before he left the room I said, "should this woman be driving?" I hoped he noticed her cognitive impairments, but he didn't (my aunt and I had tried unsuccessfully to take away the keys at that point). He ordered new neuro psych testing to compare to the set 5 years ago. Those results were available in June and showed "Global Cognitive Decline." Those were the first results I saw the actual report of. Having a psychology degree I was able to understand most of the scores and stats, and they were absolutely devastating. However, the results from 2005 weren't so hot either (the comparisons were on the report). By far her worst scores were on all realms of executive function, judgement, visual spatial skills, and attention. Best scores were on memory and knowledge.

She was so clearly impaired and unsafe at this point. Conversations with her became nearly impossible because of speech perseveration. I had her moved into a continuing care community where she still resides, now in Assisted Living. The Exelon patch was a help, and she regained a good deal of functioning for a long time. Her short-term memory remains very good. She has NEVER hallucinated, however does have REM Sleep Behavior Disorder, controlled with clonazepam. Her cognitive abilities wildly fluctuate, making it very unclear to doctors and caregivers just what kind of help she needs. She has officially had a "Parkinson's Disease" diagnosis all this time, but I consider it closest to LBD. Neurologists are now referring to it as "multifocal dementia." Her status right now is another story entirely. I will leave it to a regular thread.

Thanks so much for reading this crazy long post. And let me tell you, this isn't even the half of it! :)


Sun Jan 13, 2013 6:32 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My mom - a complicated case
Dear Annie,
Welcome, I am glad you finally decided to post and also that you have ben reading and learning for some time. Seems it has been a very long road for you and the family. I am sure there is much more to your story and I know there are people here that can relate to it.
Good Luck !!

Irene Selak

Sun Jan 13, 2013 8:37 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post Re: My mom - a complicated case
Dear Annie,
It sounds as if you have had a very difficult time, and have a lot of challenges now - but also as if you are facing them with courage and a lot of insight into your mom's problems. I hope that you and her doctors will be able to help your mom, but no matter what happens, you can count on lots of folks here for encouragement, sympathy, kindness, and a patient virtual ear when you just need that. Take good care of yourself -

Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Mon Jan 14, 2013 4:46 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: My mom - a complicated case
So sorry for your need to be here Annie, but glad you found us. We've all been through or are going through much of what you are experiencing, so there's lots of empathy and understanding here. Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Mon Jan 14, 2013 2:41 pm
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