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 My MIL Newly Diagnosed and question 
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Joined: Mon Sep 02, 2013 1:28 pm
Posts: 23
Post My MIL Newly Diagnosed and question
First of all I want to apologize because I know this is going to be a very long post. I am new to the board just joined a few days ago. My MIL was just recently diagnosed with Lewy Body Dementia. I have many questions that im sure someone who has been through this sort of thing can help me with. First off, I will give you some background into the situation.. My husband and I have been together since 1998 Married since 2002. When we first got married we lived with MIL for about 6 months. My MIL is 71 yrs old will be 72 this month. She has always been a bit "scatter brained" Misplacing things and not paying attention but she is a very book smart person. She has had a few episodes over the yrs of "losing it" The first one that i know about happened in 1984 when her sons wife turned up missing and to this day has never been found. I did not know my husband at that time so i really dont know all the circumstances behind what went on with MIL but i do know they said they came to her house one day and she was sitting in the chair not talking not moving just staring off into space. They took her to the hospital and was put in the psych until for awhile. Im not real sure what the diagnosis was at that time. She worked most of her life retiring in 2006. In 2007 our son was killed in an accident, he was 4 yrs old. Severl months after that MIL had another spell. She was driving to her other sons house which was about 45 min away from where she lived. She called my husband and told him she was lost and didnt know how to get there. The other son went to where she was and she followed him to his house. While she was there he said she was following him around every where and would not let him out of her sight then she totally lost it.not sure what exactly happened but they called the ambulance who took her to the hospital. what they told us at that time was she had a vitamin B12 deficiency. They gave her several different types of vitamin B tablets and some folic acid to take. She came home and i guess she wasnt taking her meds like she was supposed to because she had another episode and i saw this one coming. She came to our house really late one night, which was odd for her because she didnt drive at night. She was telling us there was an angel that came to her door and it scared her. Not sure what she was talking about. we tried to get her to stay the night with us but she woudnt. she went home and then about an hour later called my husband wanting him to come over she had called the police because she said the angel was at her house again. Hubby went over and got her and brought her to our house. she had a little dog and she brought it too. The whole night she was there she didnt sleep she stood at our sliding glass doors all night with her purse, her dog food bowls and dog food and her vitamins in her hand. the next morning hubby left for work. when i got up she was following me all over the house well to make a long story short sometime during that period she got it in her head that i was some sort of pod person and i was going to destroy her and her boys so she was afraid of me. we got her back to the hospital and they got her vitamin levels back up and she was ok. It was around that time thought that i noticed she was getting more and more forgetful. I mentioned to hubby and his brother they should have her checked which they dismissed because they didnt think anything was wrong. Fast forward to 2010. My hubbys brother had a stroke and passed away. There were no major episodes with her but i noticed that she got lost a lot. when she was trying to get home she got lost on her own street that she had lived on for over 35 yrs. Her car broke down, thankfully and she didnt drive anymore. Last yr we found out she had cancer. She underwent 6 weeks of radiation and 2 weeks of chemo prior to that though the forgetting things was getting worse. during her treatments she had no idea when her appointments were or even what was going on with her treatments. At the end of her 6 weeks of radiation she was hospitalized for dehydration and starvation she would not eat or drink anything. she was low on potassium and lots of other things. The 2nd day she was in the hospital is when the hallucinations began. She thought she was in saudi arabia and was seeing people that were not there she thought everyone was out to get her and hurt her. this went on the whole time she was in there. they had a psychiatrist come in and see her and she told us she probably had some sort of dementia. She got out of the hospital after 2 weeks and came home she was living with us by then because her house burnt down right before she began treatments because she left a pan of grease on the stove and forgot it which she had done numerous times before. Anyway within a week she was back in the hospital for another week because she was still not eating and drinking. After she came home again the parinoia and suspicions lasted another 3 or 4 weeks and then seemed to go away. She still had a hard time remembering recently learned things and she still does. I took her to a memory clinic they did an mri of the brain and several tests lasting over 6 hours. they told us her brain had shrunk considerably and that she did very poorly on the tests. dr said there were proteins in her brain at the back. She has always been a weird sleeper since she retired but that has gotten worse in later yrs she sleeps maybe 2 or 3 hours at a time and then is up all night long. Dr told us lewy body dementia but there are some symptoms of this i dont see in her like the Parkinson she walks very well, very fast and stomps loudly so i dont see any signs of shuffling, she doesnt have tremors or anything like that and that is what has me confused. She does sit leaning forward all of the time so i dont now if that is a symptom or not. Can someone help me with this. Do you think it is lewy body or something else? Im confused. Some things you can tell her and she will remember others not, she is very argumentitive about lots of things and at least once a week she will have a screaming yelling fit over something as simple as getting her the wrong kind of cereal Most of the time she seem alert and knows what is going on but she still does get confused over some things any help would be great. again i am sorry this is so long and that i was all over the place with this.

Tue Sep 03, 2013 10:30 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My MIL Newly Diagnosed and question
Wow, what an experience you've been through! It's rather late and I can't address all of your concerns but I can say that my husband has never had a tremor, nor have any other Lewys I have known. He does have many other Parkinsonian symptoms which respond to Sinemet. Paranoia was an early symptom and for several years, off and on, he would think I was an impostor. It's incredibly frustrating. You are in my prayers. God bless.

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Sep 04, 2013 12:01 am

Joined: Sat May 25, 2013 3:53 pm
Posts: 330
Post Re: My MIL Newly Diagnosed and question
Hi and welcome to the forum. Don't worry about being long winded - you can type as much as you like here. I'm very sorry to hear about your son and all that your MIL has gone through. You really need a neurologist who's experienced with LBD to make the diagnosis, which it sounds like you have. Then reading through the Symptoms page on this web site might help you decide if LBD is what you see or not. An LBD diagnosis can be made without the Parkinson symptoms. My mother never had any shaking but did develop a shuffle later on. Others on this forum will give you more feedback so stay tuned...

Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

Wed Sep 04, 2013 12:41 am

Joined: Mon Feb 14, 2011 10:22 pm
Posts: 194
Location: Portland, Or
Post Re: My MIL Newly Diagnosed and question
Hi and welcome to the forums. My mom was diagnosed about 3 years ago. The first two years were incredibly difficult and very much a roller coaster with lots of ups and downs. The last 9 months or so have been very " normal" almost ( I cringe saying that because as soon as I do everything will flip upside down again). We're enjoying it tremendously! Mom had a slight tremor in one of her hands for several months before she was diagnosed, but no real shaking or tremors to speak of now. She does have a shuffling gait and uses a walker at home and a wheelchair when we go out to appointments.,but she also had a bad ankle fracture several years ago that didn't heal correctly. Take care of yourself and trust your instincts .

Ellen 60, caregiver for mom Marion 82, dx LBD Feb 2011 died April 11, 2015

Wed Sep 04, 2013 12:34 pm

Joined: Mon Sep 02, 2013 1:28 pm
Posts: 23
Post Re: My MIL Newly Diagnosed and question
Thank you every one for your replys. This disease is so confusing because most of the time she seems perfectly fine. As i said there is short term memory loss, she asks the same questions a lot and repeats herself and her sleep patterns are very strange. One week she may go to bed early (not sure if she sleeps all night, she says she doesnt but i dont hear her up) and be up the following day all day, the next week she could stay up all night long and sleep 10-12 hours the next day and other times she may sleep an hour here and an hour there all day and all night. She does play on the computer, she plays word games and she is very good at them. When she was going through her cancer treatments and awhile after when she had the really bad episode of not remembering things or knowing what was going on she wouldnt even touch her computer or her tv which was two of the things she loves most but now she is back to playing and watching again.. If anyone can give me anymore insight please feel free ill take all the suggestions i can get.

Wed Sep 04, 2013 4:39 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: My MIL Newly Diagnosed and question
Hi, welcome, and I am so sorry for the loss of your young son. You've had an awful lot to deal with the past few years.

My dad didn't have a lot of the typical Parkinson's physical symptoms either, but did have a lot of the mental/emotional symptoms of LBD in the beginning. You are probably aware that LBD and other dementias, at this point, can only be diagnosed upon autopsy, so drs. have to make their best guesses based on symptoms and tests. Since LBD patients can react badly to drugs administered for other types of dementias, it is important to get the best dx that you can even though it can't be an "absolute" while the person is still alive.

Having a dr. try some different meds (low doses at first and only 1 new one at a time) and see if some of her symptoms can be better controlled is what I'd focus on at this point. It sounds like anti-anxiety drugs and something to help here sleep would be really important things to try to control. If I only slept 2 - 3 hr. a night I'd not be acting particularly normal either, so someone with dementia would probably show a big increase in "issues" with major swings in sleep/lack of sleep.

If you have other specific questions, you may want to post them in the appropriate topic areas so you'll get more people reading/responding to them. Hugs, 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.

Wed Sep 04, 2013 7:45 pm
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