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 Mom just got diagnosed with LBD at age 65 
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Joined: Fri Aug 20, 2010 3:49 pm
Posts: 3
Post Mom just got diagnosed with LBD at age 65
Hi Everyone,

Really glad to find this site. My mom just got diagnosed with LBD. Over the past 2 years we started really noticing some changes with my mother...forgetting conversations, losing things, getting dates/times mixed up, big organizational problems. Last April, she had an MRI and they found that she was having mini-strokes and global atrophy. The dr put her on Galantimine. We brought her back last week and told the dr that she was having dillusional thoughts of conversations that never took place, and she was convinced that the man across the street stared out the window at her all day long, she started bringing her pocketbook with her everytime she went from one room to the next...crazy changes with in a 4 month time frame. Doctor said that she has LBD.
My question for everyone is...what can we, as a family, expect? From what I've read, it sounds like this disease progresses very quickly. What have your experiences been like?
My mom lives an hour away with my dad so for the most part someone is always there (however her behavior is driving him crazy). She is still driving, however my dad just started to notice that she is forgetting to use her mirrors...he doesn't feel it's necessary to have her stop driving yet. The doctor told her that the accident rate of someone with dementia is the same as someone driving under the influence. At what point should we tell her to give up her license?
This is an awful thought, but from what I've read, they say that the typical life span of this disease is around 5-7 years...what have your experiences been?
Thanks for your info! - Corey


Fri Aug 20, 2010 4:04 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Mom just got diagnosed with LBD at age 65
Corey, first of all, welcome to the forum! It's a very helpful and supportive place. If I had time I'd tell you of our experiences in Lewy Land but, for now, I will urge you to take your mother's car keys away! My husband still thought he could drive, too, and would never have listened to me but when other people refused to ride with him he got the message. The first thing I noticed was that he was continuously to the left of the center line, which he hotly denied. He hasn't driven for about five years now but he will occasionally state that he thinks he could drive! :shock: If your mother were to have a bad accident and kill someone--maybe a child--you would all wish you had been firmer about it. Doctors are notorious cowards about telling patients they shouldn't drive but he/she might be your best ally in persuading your dad that your mother should not be driving. You could threaten to tell the insurance company about the nature of her illness.

Anyway, I wish you well in this awful and challenging battle. God bless you and your family!

_________________
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.


Fri Aug 20, 2010 4:29 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Mom just got diagnosed with LBD at age 65
Welcome Corey,
Sorry for your need and I hope that you will visit the LBDA.org to learn all that you can about LBD to help your parents!

As to the driving issue I won't comment much except to say anyone with Dementia should not be driving, one never knows when these delusions will strike!

Good luck in your search here, it is really hard for anyone to describe this to you as all LBD'ers are so different

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Irene Selak


Fri Aug 20, 2010 5:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Mom just got diagnosed with LBD at age 65
Hi Corey - I'm glad you found this forum and I'm sure you'll find it to be a big help. Rather than reiterate my dad's story, I suggest you read as many of the Intros. and then other postings so you can get an idea of what we are all going through or have been through.
I would certainly have your mom stop driving NOW for the same reasons you have already seen here. I told my dad last year that I didn't think he'd want to spend his last months or years in a lawsuit from having killed or seriously maimed someone, and that was very likely to happen with his dementia and physical problems. I also didn't want to be sued, as I know adult children who are in a lawsuit from not having taken an elderly, infirm parent's license away and the parent had a bad accident. You don't need that either! Good luck to you and visit here often. 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.


Fri Aug 20, 2010 8:33 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Mom just got diagnosed with LBD at age 65
Hi Corey,
Sorry about your mom, and at such a young age. My husband's Dr. diagnosed him on 9-2-08 (he was 62) and on that day told him he should not drive anymore. My husband drove to that apt. but handed the keys over to me after our apt. and never drove again. I cannot stress enough how important it is to stop your mom from driving. Those delusions can easily crop up while she is driving, not to mention the hallucinations that may follow. I am not saying it is easy to take someone's freedom away. My husband spent the next several months asking everyone (it didn't have to be a health care professional) if he could drive again. I hope this may help you: I told him that in California his Dr. had to report to DMV anyone with a diagnosis of dementia and that was an automatic suspension of his license. I also played along with his desire to drive and picked up a dmv handbook for him to 'study' in hopes he could re-take his test. Believe it or not, after he saw I was on 'his side' he let the whole thought kind of fade. Something else to have in place right away is all legal papers and an appointment of a POA, or whatever your state and family need in case one day your mom is just not able to make rational decisions. As far as progression of the disease, I think it's all aver the spectrum. I believe our experience is not typical: Ken went from paying bills, (driving), making plans and helping with everyday endeavors less than 2 years ago to now: he cannot get up or down to a chair or bed by himself, he cannot answer simple questions "would you like a glass of juice?" most of the time, he does not know all of his children, only the daughter who visits several times a week, he cannot go in a public place such as a play or movie because too much sound or stimulation agitates him, we can't have more that one or 2 people over at a time for the same reason. I feed him about half the time because he mixes up the food on the plate with the non-edibles such as straws, napkins...which he tries to eat. He cannot shower himself and is incontinent. I honestly don't think that rapid decline is typical, though. Ken fell a year ago and fractured his elbow in 6 places which caused a huge jump in his cognitive and physical deterioration, which he never regained. I found out only after his "fall" (at one point he told us he was trying to kill himself, then later said it wasn't true) that he had been very depressed, which is another symptom of the disease that may need to be treated. I really wish I'd have talked to others who are living with it before that had happened to my husband. All that said........my husband is still very loving. He definitely understands and appreciates warm hugs and kisses. Kindness goes far with him. He still has a strong sense of home and knows me (okay, most of the time) and gets a kick out of going through photo albums. Sorry I was so long-winded with my reply. Your dad has a huge challenge ahead of him, it's so nice he has you to share the journey. Take care, Sherry

_________________
Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Fri Aug 20, 2010 10:24 pm
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Joined: Thu Aug 19, 2010 10:03 am
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Location: Hampton, NH/The Villages, FL
Post Re: Mom just got diagnosed with LBD at age 65
Hi, Corey,

My husband, who is 64, was diagnosed with a degenerative brain disease five years ago and the diagnosis was narrowed down to probable LBD about a year and a half ago. He has retired but still functions quite well. Giving up driving was a big issue. Because of the meds he is on and because of the diagnosis that he has, we knew we would be vulnerable if he ever had an accident - his fault or not. We found a hospital nearby that gives a three hour test - 1 1/2 hour of testing reflexes, eyes, etc. and 1 1/2 hour road test where he is behind the wheel. They give us a full report and they decide if he is able to drive without unusual risk, where there may be dificiencies or circumstances he should avoid etc. The test is expensive ($400), but I think of it as an insurance policy and it takes the responsibility of taking away his driver's license away from me. So far he has passed the tests but has agreed to drive locally only - to the barber's, the drug store, Home Depot, etc. Sometimes I go with him just to see how he is doing. He drives cautiously but carefully (maybe a little slower than I would which is probably a good thing.) When we go to Florida, I drive the whole way and he does not object. In Florida, he drives a golf cart around. Perfect!

I don't know if this is the greatest idea, but it's an option and it has worked for us for the time being. Good luck!

Terry


Sun Aug 22, 2010 10:21 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Mom just got diagnosed with LBD at age 65
Terry, the test sounds like a good idea to minimize liability but the fluctuations of LBD can lead to quite different responses at different times. Hopefully, that knowledge would not show up in court but it still does not necessarily mean he is safe to drive.

_________________
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.


Sun Aug 22, 2010 11:09 am
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Joined: Tue Feb 23, 2010 10:32 am
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Location: Kalispell, MT
Post Re: Mom just got diagnosed with LBD at age 65
If a juror hears the doctor(s) testify about his condition, including the information in the medical records, and their experts testify that the driving test meant nothing (except to get the hospital sued). And the defense says, uh, well, he passed this test back on (date), but we haven’t tested since, and no, we can’t say that means he can or will drive safely, only that he passed a test, how would the juror vote? And, it could make the insurance company deny coverage.

They can prove he is not safe to drive, but nobody can prove he is safe to drive.


Sun Aug 22, 2010 5:47 pm
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