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 To drive or not to drive 
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Joined: Sun Mar 30, 2014 5:11 pm
Posts: 80
Location: IL
Post Re: To drive or not to drive
Amen, Donald! I'd like to echo Leslie's point about how "awesome" of a man you are for giving up something that is so important to you, because you care about others' safety. I'm sure that was not as easy decision to make, but kudos to you for making it. It's fortunate that you still have the insight to realize the gravity of making this decision. You are truly an honorable man in all of our eyes! AnneAAA

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Fri Jun 06, 2014 3:46 pm
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 67
Location: Canada, Ontario
Post Re: To drive or not to drive
Hi Donald; My husband had to forfiet his licence. This was not done willingly and I heard about it for a few years afterward. What caused me to ask the neurologist if he should be driving was his problem with spacial ability. He had no idea where the car was on the road or in relation to other cars. He would run over the sidewalk at corners and I was seriously afraid for pedestrians. He would have been very troubled had he hit someone. Today he sits on the arm of the chair or falls on the floor. He doesn't seem able to learn to back up to the chair and feel it behind both knees before sitting. I am glad you have chosen to stop driving, I realize it was a very hard thing to do. My husband has not driven now for over 5 years and he has had no rapid decline due to this. Hope this is of some help. Anne


Sat Jun 07, 2014 10:39 pm
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Joined: Tue May 06, 2014 7:06 pm
Posts: 13
Location: Chicago Suburbs
Post Re: To drive or not to drive
I want to start by saying a heartfelt THANK YOU to Donald for candidly sharing his feelings from the perspective of man diagnosed with LBD. Most of what I have read on this site comes from the view of the family members trying to help and support their LO's. Donald, I want you to know that there are many, many men out there struggling with similar feelings and frustrations as a result of being "told" that they can no longer drive. I think I speak for all family members of men (and women) who have also been given this medical directive when I say we all COMPLETELY understand your frustration and anger and only urge you to not drive because we want to continue to enjoy our lives with you and love you for many, many more years. That means firstly keeping YOU alive and avoiding an unfortunate tragedy that could ruin everyone's lives including innocent non-family members. Everything is out of LOVE!

I appreciate you all discussing this subject as my father is struggling with this issue as I write this post. His neurologist has told him not to drive and of course as with our friend Donald, he is not satisfied nor happy with that opinion. I know that he has already snuck out on several occasions to drive when my Mother was preoccupied with other things (such as showering). It almost seems like a "cat & mouse" game to some extent. Being rather recently diagnosed with LBD, my father is still pretty sharp mentally and can be pretty clever and sneaky about things. His biggest deficiencies at this point are all physical as he has most if not all of the physical symptoms of LBD which we all know about.

DALEORANNA (forgive me but I didn't get your name) told a story which reminds me and my siblings so much of our mother and father and her struggles with dealing with the hide the keys/don't hide the keys issue. She is a wonderful woman, a great mother, wife , grandmother and friend to many people. If I had to identify her ONLY personality shortcoming, I would have to say it is her tendency to be passive in conflict situations. She always thinks of the other person's feelings ahead of hers and never want anybody to feel bad about anything. Unfortunately this does not lend itself exceptionally well in this situation. My mother has already given me his small collection of handguns to hold for now as my father has been depressed a lot over the past few months (especially after getting the LBD diagnosis). He recently learned that my mom removed the guns from the house and he is absolutely furious. Now she is struggling with the driving issue and he is throwing back at her that she first took his guns and now his keys etc. etc. I just hate that my mother has to deal with the hostility. My father has always been a calm, wonderful man and a non-violent loving husband to my mother. The changes are hard for all of us to deal with.

And the days continue..................

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Mark, son of 76 yo father just diagnosed with LBD and some signs of Parkisonism.


Mon Jun 23, 2014 12:54 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3327
Location: Vermont
Post Re: To drive or not to drive
Mark, these sure are difficult situations and I applaud all that you are doing and trying to do. Most of us are not wired to like conflict; only a small percentage of the population sees conflict as a positive force leaves us more open to change and creativity. There is research to prove this. However, dealing with a potentially very dangerous situation now will eliminate what could be a heartbreaking and VERY bad situation later on. Perhaps you can share some of our stories with your mom, if she won't get on the forum herself. The last thing she needs is your dad killing or maiming someone else because his legs "get stuck" or he is unable to comprehend distances, speed, make safe decisions, etc.

My role in my family was always the negotiator, the bearer of bad tidings, the organizer, etc. So, when my dad's driving became a big issue, my mom had already died, which left my sister or me to tell me dad. Guess what, I was "elected" to deal with it. It was a conversation I'd been dreading for a long time, but at some point someone just has to deal with it for safety's sake, and so I did. I felt horrible taking my dad's keys and driving them to my sister's but I knew he would sneak out and drive when he thought he could get away with it. I felt guilty but I also knew it was the only way to keep him and others on or near the road safe.

None of us wants to give up this privilege that we Americans hold so near and dear. This will be the month I will write my agreement to give up driving when my kids tell me "it's time." I never want them to have to go through this wretched, heartbreaking conversation with me in the future. They will probably think I'm a little nuts for doing this at this point in my life, but some day they will appreciate what I'm going to do. Good luck helping your mom deal with this, 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 Jun 23, 2014 1:37 pm
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Joined: Wed Jun 25, 2014 11:24 am
Posts: 30
Post Re: To drive or not to drive
I have used these same questions when asking my husband who is 69 years old. Unfortunately we know that you can not reason with this disease. Months of frustration and debates which were futile. I haven't let him drive for at least nine months said he began driving left of center too close to oncoming traffic.

After chasing him around for 4 hours one day outside in my pajamas I finally took the keys away from him. He asks me about them every day. He has Capgras syndrome, seeing me as 3 different people so it must be maddening to him to think someone else has his keys. When he sees me as his wife and asks, I tell him the keys are safe, the car is safe, he says Okay, but in the next breath starts again with someone is going to steal his car.

My dilemma now is how do I get him to turn in his license in. I have power of attorney....can I do it and have them use his old license picture to make up an ID or does he have to physically come to the registry to have a photo ID made?
I live in Florida right now. Thanks for any advice.

Ann, wife of 69 year old LBD - Parkinson's patient with Capgras Syndrome.


Fri Jun 27, 2014 6:22 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3327
Location: Vermont
Post Re: To drive or not to drive
Hi Ann and welcome to the forum. This is something you should probably ask at your DMV unless someone on this forum has recent experience with it. Does it really matter if he keeps the actual license? If you have the keys so he can't drive, does it really matter? Also, if he really wants to drive, as you said you can't rationalize with someone at this stage with LBD, he probably wouldn't even think about whether he has a valid driver's license in his possession, so this may be a moot point.

Good luck, let us know what ensues… 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.


Fri Jun 27, 2014 8:12 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 242
Post Re: To drive or not to drive
Hi Anne and welcome to the forum. I applaud you for having the strength to take the keys away. As for the driver's license I think, when it comes time to renew it, you can just tell them he doesn't drive any more...

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


Fri Jun 27, 2014 11:20 am
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Joined: Tue May 06, 2014 7:06 pm
Posts: 13
Location: Chicago Suburbs
Post Re: To drive or not to drive
Thank you again everybody for your stories and advice on this board. It is SO comforting to know I am not the only one dealing with a LO with LBD. we suffered a setback a couple of days ago in that my Dad had a follow-up appointment with one of the neurologists he had seen over the past six months. While he and my Mom were talking with this doctor, he unfortunately and unbelievably proceeded to tell my dad that it was his opinion that he did not have LBD or Parkinson's. He went on to to tell him that he believes he has a "BALANCE PROBLEM" and that he just needs to "EXERCISE" more and come back and see him in 6 months.........WTF! (Pardon my language abbreviation).

Needless to say this has set EVERYTHING back with my Dad and the family.

As you may remember, the diagnosis of LBD came after my parents drove to Mayo Clinic after continuously getting nowhere at University of Wisconsin Madison.

Now, my Dad thinks he is 100% healed and "fixed" and can go back to life as he knew it. He is all excited about DRIVING again and even has talked about riding horses again. AM I WRONG TO BE ANGRY?

My mom told me he has been " so happy" since the appointment and has been calling friends telling them he does not have LBD and is back to his "old self". I actually think my Mother is falling for this BS too and she is enjoying my Dad's fresh happiness.

Of course we know the reality.......he has had two serious falls since getting the new diagnosis and continues to demonstrate all the symptoms of LBD/Parkinson's that he has shown over the past couple years.

NOW WHAT.......??????? HELP

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Mark, son of 76 yo father just diagnosed with LBD and some signs of Parkisonism.


Sun Jun 29, 2014 3:15 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 726
Location: LA
Post Re: To drive or not to drive
What next? Time will take care of part of it. In the meanwhile you need another local medical team, you owe nothing to that insensitive doctor no matter how long he has been 'treating' your dad. When you do interview a new doctor make sure he is familiar with LBD and also have medical records or give him permission to retrieve them from Mayo Clinic. If I sound angry, I am. Sorry. Such as that is still going on? Unfortunately yes! He needs to spend a week, night and day, in your mother's shoes.

Yes, I know about trying to go for a shower thing when Mr Bobby was calm and settled only to find him walking the walls and examining his closets when I return from the bathroom. You may not be familiar with our case but my husband was totally blind and could not go anywhere without holding onto me or someone else, but when he could escape, escape he did, even to the point of walking with support of the walls. One day after a shower, I found him in front of one of the closets feeling of everything on the top shelf, saying sadly, "My shoes, my shoes". I'm sorry but as I remember, I tear up. He always took such good care of his shoes in the other life but when he could no longer use them any more, I couldn't bring myself to discard them so I gently wrapped each pair in newspaper and stored them on the top shelf of one of the closets. That is what he found. I found him like that and asked if I could help. He answered, "Are these my shoes?" He was satisfied that they were safe and let me lead him back to bed.

I understand your mother's feeling and wishful thinking, I do! Maybe you could convince her that a 'Second opinion" is always a good idea.

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Sun Jun 29, 2014 5:40 pm
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Joined: Sun Jun 08, 2014 11:24 am
Posts: 23
Location: Locust Grove, Ga
Post Re: To drive or not to drive
Who has power of attorney? There is a desperate need for someone to intervene I feel for both your parents. As the wife of a dear man diagnosed with LBD I too have hoped for this to be the wrong diagnosis, even tho in my heart I knew it wasn't. My husband is still struggling with this diagnosis after a year. The grieving process alone is extremely difficult. I don't think anyone can really understand how the reality of this disease affects each spouse unless you have been there. I feel for you, as you are in the position of being a "wet blanket", and not offering a positive opinion when both of your parents desperately need something positive. Can you take your mom out to lunch and talk very candidly with her? Help her by making sure she sees your pain too. No mother wants her children hurting. Try to express yourself without being forceful but by being gentle and loving, reminding her how much you love them both and you also wish things could be different too. Empathy.

So much pain, and the to start the process again. I am sooooooo sorry. :cry:

Debbie

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64 year old wife of Tom, 72, who was diagnosed LBD a year ago.


Sun Jun 29, 2014 6:43 pm
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Joined: Wed Jun 25, 2014 11:24 am
Posts: 30
Post Re: To drive or not to drive
Dear Lynn and gailabbi

Thanks for welcoming me to the forum. The reason I need to surrender by LOs license is an insurance matter. Due to the high cost since he had huge claim last year, I cannot afford to keep him on the policy. It is practically impossible for me to contact the registry since he is with me 24 hours a day, but I am going to try to pursue this before my next payment due date.

Unfortunately my husbands condition is fading fast. I have some other issues to deal with now. Never a dull moment, right?

Ann, wife of beloved husband with Capgras syndrome


Mon Jun 30, 2014 6:40 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3327
Location: Vermont
Post Re: To drive or not to drive
Oh Mark, what a job you have! Dorothea and Debbie given you some great advice. Your mom definitely needs to hear from you that the reality is what it is, despite the dr.'s misdiagnosis. And, you do need to find him another dr. and get him there as soon as you can. It is so frustrating when dealing with medical professionals who are either misdiagnosing, misunderstanding, and/or going against the patient's and their families wishes. Good luck dealing with this new roadblock, and whatever you do, make it so your dad cannot be a safety hazard to everyone else on or near the road. Let us know what's happening. You are a good son to hang in there, especially with this latest challenge. 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 Jun 30, 2014 9:37 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 726
Location: LA
Post Re: To drive or not to drive
Suggestions for medical team: Primary Care Physician, Neurologist, and Geriatric Psychiatrist. All working together and sharing information, under the watchful eye of Mayo. dorthea


Mon Jun 30, 2014 3:46 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 242
Post Re: To drive or not to drive
Hi Ann, I guess asking the doctor to call in to the registry and have the license revoked would be one way to do it?... Good Luck!

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


Tue Jul 01, 2014 11:03 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 242
Post Re: To drive or not to drive
Hi Mark, I think if it was me I would call up the Mayo clinic and talk to the doctor who diagnosed your Dad and ask him/her to give a call to the other neurologist and fill him/her in on why and how the diagnosis was made and what the follow up protocol they recommend would be - and have the Mayo Doc ask the other neuro for his/her help in making that happen! I found most Docs very helpful when you get to the crunch point.

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


Tue Jul 01, 2014 11:06 pm
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