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 Will he drive again? 
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Joined: Sun Mar 11, 2012 7:43 pm
Posts: 19
Post Will he drive again?
My husband was diagnosed recently and hasn't been driving for a couple of months now. It is , of course, very frustrating for him to lose this freedom since he's only 51 and has always loved driving. Getting in the car and going exploring has always been something we've both enjoyed. I still drive everywhere, but he freaks out -even more than he did before Lewy-(haha) when I drive. He thinks we're going to hit cars and signs and everything else.

He is hopeful that he'll be able to drive again once he gets the right meds. The Neurologist put him on Sinemet for his tremors and we hope that after his upcoming tests, he'll be put on something like Aricept for his confusion.

I just wonder if he's kidding himself. Does anyone have experience with an LBD patient being able to drive again once they've reached this stage of the game? The last time he drove, he got lost going to a place he goes frequently and thought the stop sign was in the middle of the road.

I also wonder about bike riding. He is frequently very dizzy and feels like he is going to pass out. He's fallen many times, but he is chomping at the bit, wanting to go bike riding now that it's getting nice out. I just say "uh-huh, we'll see what happens with the meds", but I am doubtful. Any thoughts???

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Kim-wife of Brent, 51 yrs old, newly diagnosed


Sun Apr 15, 2012 5:54 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Will he drive again?
Would you feel safe on the roads with someone in his condition driving? Does his doctor think it's safe for him and others? If he thinks a stop sign is in the middle of the road and has similar occurrences, I sure wouldn't want to be on the road with a driver who is hallucinating! If he is having tremors, too, it doesn't sound at all safe to me, for him or anyone else on or near the road. Can your local DMV give him a driving test, both written and driving and let them be the ones to take away the license if that's what it takes to keep him and others safe?
I'd hate to lose my ability to drive, but I sure wouldn't want to kill or maim someone else because I refused to give up driving. I know it's hard. I know what it's like to have to take away the keys from a LO, but how would he and you feel if someone were injured in an accident? That would be another whole layer to deal with! This is a difficult thing to have to say no to, but the consequences of not taking away a license from an unsafe driver can be catastrophic. Lynn

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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.


Sun Apr 15, 2012 6:02 pm
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Joined: Sun Mar 11, 2012 7:43 pm
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Post Re: Will he drive again?
Lynn, there's no way in the world I would want him driving as he is now and he is aware that he can't.

I guess my question wasn't clear. I am wondering if medication would make it possible for him to drive again- if anyone has seen a major turnaround like that with meds. I don't think it will happen. I just don't want him to get his hopes up if it's not possible.

Kim

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Kim-wife of Brent, 51 yrs old, newly diagnosed


Sun Apr 15, 2012 6:12 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Will he drive again?
I think you are handling it absolutely correctly -- keeping your doubts to yourself but telling your husband "we'll see what happens." I suggest this be a topic of discussion next time you see the neurologist, as you will want the neurologist to be the bad guy.

I have never seen anyone with mental confusion take medication and be able to drive subsequently.


Sun Apr 15, 2012 6:39 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Will he drive again?
Kim, this brings back painful memories. Not being able to drive was the worst part of the disease as far as Coy was concerned. His doctor said, "I'm sorry. I have to report this diagnosis to the state, and they will revoke your license." He accepted this, then began begging her to write a letter to the state and explain that he is getting better. She said, yes, I will write that letter if you can pass the driving test at Courage Center. (Rehab place dealing with many kinds of handicaps.) Well, he never did feel confident enough to insist on the test. This went on for several months before he dropped it. I think he mourned the loss of driving for more than a year.

Getting a personal mobility scooter brought a ray of sunshine back into his life.

I agree with Robin about the "we'll see what happens" approach, but for your own knowledge, no, I don't think driving will ever be an option again.

LBD is characterized by fluctuations in cognitive ability. There are good days and bad days, good hours and bad hours. Even if meds greatly improve the symptoms, there is always the possibility of bad moments. Having a bad moment suddenly come on while one is driving is just too risky -- even for someone who has mostly good moments.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Apr 15, 2012 7:32 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Will he drive again?
I know just what you mean about freaking out. My husband would go postal when I was driving---'SLOW DOWN!!', even though I was going the speed limit or less. Sometimes he would try to grab the wheel. :shock: With the visuo-spatial deficits they often get with Lewy it's wise to keep them from driving earlier than they think it's necessary. My husband drove longer than he should have but has not driven in five years now.

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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 Apr 15, 2012 7:58 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Will he drive again?
LOL - sounds like many of us have husbands who freak out when we're driving. Mine is always telling me how to drive. I can't imagine what will happen if he is disabled and I have to do all the driving. I think I'll put him in the trunk! LOL When we had our motorhome, last year I was speeding and didn't realize it when we were in Colorado. This nice elderly sheriff took my license, went to his car, came back and said to my husband "well, you are supposed to be the navigator. Why didn't you see the sign and tell her she needed to slow down?" Then he winked at me. I got a real kick out of that since my husband was asleep and he got blamed for my going way over the speed limit because I didn't see the sign and didn't know we were approaching one of those middle-of-nowhere towns of about 3 houses. Still makes me laugh to think about it! Luckily, no ticket. Phew, what a nice sheriff! After that I had to listen to even more backseat driving.....

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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.


Sun Apr 15, 2012 8:04 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Will he drive again?
For a couple of years after Coy wasn't driving he'd give me turn-by-turn directions and advice. "The other lane is moving faster, get over there." "You'll need to take the exit after this one. Start getting into the right lane." Etc. etc. This was most annoying (or amusing, depending on my mood) when we were going to a place near where I had driven myself to work for several years.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Apr 15, 2012 9:12 pm
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Joined: Sun Mar 11, 2012 7:43 pm
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Post Re: Will he drive again?
I appreciate the replies. I think I might have been almost as hopeful as he is about him being able to drive again. Knowing that it won't happen really puts things into perspective. I guess it feels like the point of no return.

Brent doesn't say much when I'm driving. He just gasps a lot, covers his eyes, and tries to put on the brakes. It is pretty funny. The only time I ever drove with him in the passenger seat before Lewy was coming home from a procedure (he had bladder cancer 3 times) or if he had a migraine.

I feel really bad for him. Driving was always a great love of his. I gave him a subscription to "Car and Driver" magazine for Christmas and when he looks at them now, he gets excited for a moment, then has a pity party because he can't get behind the wheel. I think it might be better if I give the rest away.

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Kim-wife of Brent, 51 yrs old, newly diagnosed


Sun Apr 15, 2012 10:02 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Will he drive again?
It really was a blow to me, too, when Coy couldn't drive. My hobby at the time was cake decorating, and he'd deliver cakes hither thither and yon, to grandkids, neices, friends, etc. He was retired and LOVED running all of our errands. It was hugely inconvenient to be the only driver. I don't think that my pain was a fraction of his, but it was real nonetheless.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Apr 15, 2012 10:51 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Will he drive again?
KD - I haven't been a CG for a spouse, but I do know it is so hard when you know your LO will not be able to do things again like drive. You grieve for what they can no longer do. They grieve for what they can no longer do. Not having the independence because of the inability to drive is HUGE. And, your having to take on more and more responsibility is also huge. These new and evolving stages of caregiving are really tough on both the CG and the person will the disease. I hope you are able to do things to take care of yourself, and I hope you have friends, relatives or home care services who can help you and give you time to get away from the CGing role. You need to stay healthy, strong and happy to get you both through. Lynn

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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 Apr 16, 2012 7:17 am
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Joined: Sun Mar 11, 2012 7:43 pm
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Post Re: Will he drive again?
Jeanne, I am a cake decorator too... :P I don't do it nearly as much as I used to, though. It got to be more of a chore than a joy. Brent did help me transport many of the cakes.

Lynn, thank you for the suggestions. I grew up with a mentally ill mother, then worked in nursing homes for years and have five children of my own. I feel, in a way, that I've spent my life preparing for this- though no one is ever really prepared for something like this. We have a lot of support from family, church family, and other friends. I know that I have to take care of myself in order to be good to anyone else. Both Brent and I are seeing a counselor to help us with these transitions. Teaching Spinning and Zumba help me a great deal too. This forum has also been a great comfort in the very short time I've been here. Sometimes I just go in the bathroom and cry.

Kim

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Kim-wife of Brent, 51 yrs old, newly diagnosed


Mon Apr 16, 2012 10:28 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Will he drive again?
kim..

the driving thing is one of the toughest, in so many ways.. for you, for him, for the whole family..
hubby drove a bit after he was diagnosed and i think it couldve driven longer, honestly. he does terrible on tests... the ad 4 hour exam test and the driving test... so he presented much worse than he was... but at an AD meeting one day they discussed it.. and one lady said the FIRST time they get lost or confused really bad, has to happen.. and you dont want it happening in a car.. she let her hubby drive way beyond when she should've.. and got a call from the police.. they found him on a train track, stuck and not sure what to do.. luckily they were able to help him and the car ,off the track, just in time..

that was enough for me .. i was firm as i could be, when it came to driving and he never drove again.. that meant he lost his work and lic all in one day...
devastating blow.. and three years later, he still hasnt recovered... he still takes the dmv tests and talks about going to get his lic back.. heartbreaking~~~

he is only 66 now and lewy started to show signs, in his mid 50's.. so glad you found this place.. its been a wonderful source of strength and knowledge ...

thinking of you..

cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Apr 16, 2012 11:49 am
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Joined: Sun Mar 11, 2012 7:43 pm
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Post Re: Will he drive again?
Wow Cindi, train tracks!!! Scary! Brent was talking about trying to drive again earlier today. He was feeling pretty good. I told him I didn't think it was a good idea. I asked him what would happen if he had an episode. He started to mumble something about feeling the confusion come on and he could just pull over. I said that the doctor had told him not to drive. He didn't say anything. He kind of huffed a bit and turned to the window.
A little later we were on the highway (I was driving, of course) and it was pouring down rain. He said something about the weather and got really quiet. I looked over and saw that he'd gone to "Lewy land". It would have been deadly had he been driving. When he came out of it, he didn't know where we were or what we'd been doing all day. He was anxious and worried about our son who was safe at school. I am hoping this is the end of the issue.

I feel very fortunate to have found this forum. Not many people have heard of this disease and I can't imagine going through this alone. Thanks.

Kim

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Kim-wife of Brent, 51 yrs old, newly diagnosed


Mon Apr 16, 2012 7:54 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Will he drive again?
Kim - don't be surprised if this isn't the end of the issue. At some point many of our LOs have become obsessed with issues like this, and no matter how well you handle it today and how much it seems like they understand, they can bring up the issue tomorrow as though there has never been any discussion or conclusion. If you're lucky, it may be the end of the issue, but don't get blindsided in case you have to deal with this at least another few times.
Glad you got home safely! Driving in heavy rain can be rather scary, can't it, especially if you're on a highway with big trucks? That's the worst for me. Lynn

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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 Apr 16, 2012 8:35 pm
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