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 To drive or not to drive 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3366
Location: Vermont
Post To drive or not to drive
At the risk of sounding like a broken record and that I am on a soap box about this issue, I thought I'd start a new thread devoted to discussion about dementia patients and driving. This is or has been a huge issue for many of us and one that can have so much impact to not only the person with dementia, their friends and family, but the community at large as well.

Asking, pleading, cajoling, tricking, or whatever, to get our impaired LOs to give up their "freedom" aka their "right" to drive, is not easy. It hasn't been easy for most of us who have had to go down that path. Once in a while a friend will say that they had this discussion with their spouse or parent, and the person nicely but reluctantly gave up their keys. I think these folks must be in the minority, and frankly, I was more than a little jealous that that was not my situation when I had to take away my dad's car keys after 70 years of his driving.

Here are some questions that might help those of you currently going through this with a LO with LBD or another serious neurological condition:

1. Would you let your LO drive drunk?
2. Would you let your LO drive high on drugs?
3. Would you let your LO drive while texting?
4. Do you feel safe having yourself, your children or grandchildren in the car while s/he is driving?
5. What will you do if your LO has a serious accident?
6. What is keeping you from making the decision to keep your LO and everyone else around her/him safer on the roads and sidewalks?

This is a really serious issue, and getting more serious as more and more people are aging and developing neurological disorders. I don't know if this is the topic area where this belongs, but it's a start! 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.


Sat May 31, 2014 12:30 pm
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Joined: Mon Sep 09, 2013 9:16 pm
Posts: 29
Location: Texas, USA
Post Re: To drive or not to drive
Lynn,

This is a terrific topic and one that I'm glad you brought up. I've seen both sides of the driving issue. My Dad was one of those folks who basically gave up his keys without a fight. He did so prior to actually being diagnosed with Alzheimer's and then later LBD. We knew that he couldn't continue to drive, and we knew something was wrong with him, but it wouldn't be until about three months after giving up his keys that he would be officially diagnosed with dementia. I truly believe, though, that he knew something was wrong for a long time before anyone else in the family caught on, and he had enough of his wits about him to realize that he could no longer drive.

On the other side of the situation -- I'm acquainted with a lady whose husband has AD. He has had two accidents in the past year (luckily no one was hurt in either one). Both were his fault but he would not admit to that fact. He would not give up his keys, would not stop driving and was angry that anyone would even think about making him stop. The last I heard he had been legally declared unable to drive, but I haven't heard whether he has actually stopped. Apparently his doctor was no help to begin with, but eventually filled out paperwork expressing his opinion that the man was unable to drive for medical reasons. His wife has seemed very wishy-washy about the entire thing. She admits that she knows he shouldn't be driving, but she won't take a stand and remove the keys permanently. She has been told by innumerable people about the possible consequences of another accident, but can't seem to put her foot down.

Sadly, many family members don't seem to "get it" until something bad happens. Had my Dad still been driving when he received his diagnosis of AD we would have made sure he stopped driving. It helped that he didn't really like to drive around town in the first place (due to no sense of direction, problems with staying on the road, other issues that we now look back on and realize were the beginnings of the disease a long time before we actually realized). Unfortunately, everyone is different. And driving is such an important part of daily living that it really is one of the most difficult things to give up, especially because it tends to take away a person's independence.


Sat May 31, 2014 5:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3366
Location: Vermont
Post Re: To drive or not to drive
Your family is very lucky that it wasn't a painful struggle for your dad to "hang up his spurs". I have posted this true story elsewhere on the forum, but it's been a while. Maybe this will help someone who is struggling with trying to get a LO to give up driving because they are unsafe.

Two local adult siblings are being sued because their elderly, incapacitated mother had an accident which has permanently maimed someone. The suit names the adult children as well as the mother because they are POA for their mom and "should have known that she was not safe driving and taken her license away." Whether that suit actually is won by the plaintiff is beside the point. What is important in my estimation is:

- someone is permanently injured because someone was not safe to be driving
- the adult children have the guilt and angst because it was their mom and they should have done something before an accident happened
- they have the stress and expense of a lawsuit, even if they win the lawsuit, they still have the stress and expense
- someone will have lifelong medical expenses because of an unsafe driver who should have had her keys taken away

I would hate to see anyone hurt because of this situation. We need to get unsafe people off the roads, whether they are drinking, texting, taking drugs, or have dementia and are driving. Who wants to be in their way when they lose control of their vehicle? 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.


Sat May 31, 2014 5:40 pm
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Joined: Sun Nov 10, 2013 9:26 pm
Posts: 48
Post Re: To drive or not to drive
I have LBD. Have for about 4 years. I have visual, touch,, and auditory, hallucinations, occasionally. Much of the time, thanks to a great Neurologist and Namenda and Arecept, I am pretty much normal. I do get agitated at night and suffer from sundowning. I also have rigidity issues, REM sleep disorder, and I mess in my pants!

All that being said, I drive! Not alone, not at night, and not when I am having issues or when my wife thinks I am having issues. She lets me know, gently that I should not drive. I have agreed with her every time.If I don't she has the authority to take my license.

Here is the issue. I am quickly loosing my independence and manhood. Let me cling to some resemblance of masculinity as long as I can! I have seen LBD and AD patients driving permission taken as soon as the DX is made. Those men go down hill fast! Please don't be to quick to strip us of our manhood. Be observant, cautions, truthful, and gentle.


Sat May 31, 2014 9:01 pm
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Joined: Sun Nov 10, 2013 9:26 pm
Posts: 48
Post Re: To drive or not to drive
To continue; While I am being disagreeable, as my wife says, LBD has caused me to loose my career since I could no longer remember how to do what I did for 40 years! There are so many things I miss and can't do because of this disease. Driving is my last hold on life! And I know I will loose that soon....


Sat May 31, 2014 9:16 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3366
Location: Vermont
Post Re: To drive or not to drive
I am concerned about people's safety, people with LBD, their LOs and all those innocent community members out there, just as I am concerned about people re: texting, drinking or using drugs and driving.

No one is trying to strip anyone of their manhood or independence. I saw my own dad walking ok one minute, and then having "stuck feet" the next minute. One of these times he was headed to his car, insisting on driving us to dinner. His feet suddenly "stuck", the upper half of his body fell onto my car hood. He was completely dead weight, and it took me over 20 min. to maneuver his feet, and the rest of his body to get him off my car, onto his walker seat. A few minutes later he was shuffling to the passenger's side of my car.

What do you suppose would have happened had he been driving and his feet couldn't move (just like they couldn't move when he was in the driveway) and he needed to use the brake? There are kids, dogs, walkers, joggers, bike riders, etc. on his street most days. At the end of his street is a fairly busy country road, the street slopes downhill at the stop sign, and there is a river right across the street. I can only imagine him not being able to stop at the stop sign and either hitting a car (which had the right of way) or him continuing across the road into the river. There are many scenarios, many "could be's" or "could have beens". We were all very lucky he didn't have a bad accident. There are also several people on here who talk about the lack of decision-making skills and judgement calls of their LOs with LBD. Those decisions can be life or death decisions, and one of my dad's 95 yr. old friends made a bad judgement call. It was the last decision he ever made.

The most important issue here is safety. The rest of the issues must be secondary to people's lives and health. I am sorry if that makes you uncomfortable. Peace, 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.


Sat May 31, 2014 9:33 pm
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Joined: Sun Nov 10, 2013 9:26 pm
Posts: 48
Post Re: To drive or not to drive
LTCVT, you are correct of course! Safety is paramount. But, I am important also. My feelings, or anyone with LBD, are important. There has to be a happy medium. Yety, your point about "Freezing Steps" causes me to stop and think. I respect your point of view and I thank you for being so strong in it!


Sat May 31, 2014 10:38 pm
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Joined: Wed Nov 13, 2013 3:30 pm
Posts: 68
Post Re: To drive or not to drive
It was a no-human-injured-wreck at work that started our whole journey into LBD. When he returned to the office after the mandatory drug test, I could see he was not all there. We saw a neurologist the next day. Suspecting mild seizures as a possibility, he was not permitted to drive. He freely turned over his keys & license, saying "I don't want to kill anyone."

In fact, it was some of his driving habits that first gave me clues that something was going on with him. His depth perception, ability to read the speed of an oncoming vehicle and perceived poor peripheral vision all said "Susan, there's something not quite right with David."

I never demanded his keys, never said in a harsh tone of voice "You can't drive anymore!" nor did I ever belittle him. I spoke the truth in love.... as I will now do with you, Donald. -- While the thought of losing your freedom is not a pleasant one, there may be things going on that you are not aware of... like the things I saw in my dear husband. And would it not be better for you to selflessly consider others, especially your immediate family, and release them from the hard task of having to ask you to cease driving?


Mon Jun 02, 2014 6:50 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3366
Location: Vermont
Post Re: To drive or not to drive
Susan - I am so glad your experience was that no one was hurt, and that your husband was cooperative in giving up his privilege to drive.
When a person is still able to understand action and consequence and can think rationally, at least a good part of the time, that really helps the situation.

Looking back at my dad's last 10 - 12 years, I can now see where some of the things he was doing were probably the forerunners of LBD. His driving was starting to get somewhat erratic and his ability to judge oncoming cars, not slowing down for a yellow light when he was way back, so he was running red lights once in a while, making a left turn with oncoming traffic, etc. I would find gentle ways of having me or one of my kids drive when we would visit him. I never wanted to make him feel badly, but I also didn't want us to be in an accident.

A few months before his big decline and our knowing there was really something wrong, he drove my sister and several friends to a community breakfast. He stopped the car, didn't put it in park and got out. The car nearly ran over an elderly woman and my sister as they were getting out of the back seat. If it weren't for the quick reaction of my sister jumping out of the way and into the driver's seat, the car would have backed across a road, into a ditch.

I think there were more close calls than we even knew about, since I live 500 mi. away and didn't see him driving daily or weekly, but I did know that I didn't feel safe in a car with him driving for a long time. I tried several times to talk with him about volunteering to give up his driving privileges, but to no avail. Finally I could not risk the safety of everyone else, nor could I envision him or me living with the guilt of another person being killed or injured because of his driving.

This was the hardest, most painful conversation I ever had with my dad. He was a kind man, a fantastic father and grandfather, but he was not safe on the roads, so I had to finally take the keys away. He no longer had the ability to rationalize or think objectively about the situation.

I do not want my children to have to go through this with me, so I am going to write a document, talk with them about it, sign it and give each of them a copy so that if I am no longer safe on the roads, I want them to hand me my document saying that I will give up my privilege to drive when they think it's time. Hopefully that won't be this week! LOL

My best to all who are struggling with this and other LBD issues. It's certainly not easy! 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 02, 2014 9:11 am
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Joined: Thu May 15, 2014 10:41 pm
Posts: 77
Location: Phoenix, AZ
Post Re: To drive or not to drive
Donald - My heart goes out to you as you maneuver your way through with this challenging condition of LBD! I learned something as the daughter of a strong, highly intelligent, unquestionably masculine Dad with LBD: His true nature never went away, nor did his strength and what I call "True Heart." The hallucinations, wetting himself, and other Lewy-caused behaviors sometimes made it VERY difficult for all of us, but his True Heart was ALWAYS there, and he never ceased being the father I look up to (still, even now that he is gone) as the rock and the cornerstone in my life. LBD takes many things away, but it can't take that away.

_________________
Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Mon Jun 02, 2014 9:28 am
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Joined: Tue Apr 29, 2014 4:27 pm
Posts: 75
Post Re: To drive or not to drive
My husband had to give up driving because he could no longer grip the wheel correctly or lift his feet high enough for the pedals, he had a very quick decline. But I also look back now and realize how long he must have been dealing with this disease. He was always the best driver I have ever ridden with, but as far back as 2 years before we knew what happening, his driving skills were badly off and he laughed about it. Now I see that he was worried himself and tried to play it off because he was scared of changes he couldn't understand. my husband was always busy from daylight until dark and then wanted to sit up and watch a movie with me. When he became to tired to sit up on a riding mower to mow the yard, we didn't know what was happening. My friends husband who died of Parkinson's, said that giving up driving was the hardest thing he ever did as a man. I do sympathize with you Donald, my husband and all men, but giving up driving, in no way, takes away form the man that you are. it actually makes you more of an awesome man to give up something you love for everyone's safety.


Wed Jun 04, 2014 10:15 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 736
Location: LA
Post Re: To drive or not to drive
Donald, I read your posts with great interest. It gives me great insight as to what Mr Bobby suffered, the same as you. I did what I could . One point I would like to address with you and that is your manhood. I do not think Mr Bobby's manhood ever diminished in my eyes. He never seemed stronger than when he would fall and insist that I not help him up, I should wait for our son or the fireman or someone else. I suppose when I hear you speak of giving up the last part of your man hood, that was my husband's strong hold. I did not insist even though I knew I could help sometime, when I heard him say, "No Honey, I don't want to hurt you". I knew it was a plea for his normalcy. I did not violate that plea nor did I cross that invisible line.

I will read your notes and remember that the medications were basically the same as we used., with the exception of changing the Aricept [It caused Mr Bobby to cry]. we gave him Seroquel with a positive result. Thinking of you and wishing the best for you.

_________________
"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.


Wed Jun 04, 2014 2:48 pm
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Joined: Sun Nov 10, 2013 9:26 pm
Posts: 48
Post Re: To drive or not to drive
To All; The discussions on this post have helped me greatly. I would NEVER want to hurt anyone because of my inability to drive. You all have made good points that have caused me to stop and think. While my neurologist says I can drive, only with my wife with me, I see where she could not stop the car or prevent an accident if my skills or physical condition prevented me from driving safely. So, my Wife drives from now on. I appreciate your persistence and sensitivity. You helped me and I appreciate that!


Wed Jun 04, 2014 4:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3366
Location: Vermont
Post Re: To drive or not to drive
Donald, it must have been very difficult for you to make that decision. But I am glad for your sake as well as everyone else near you that you understand how this awful disease can make the most skilled, experienced person not be able to respond in an instant. All of us who have been driving for a while know that sometimes there is only a split second between being safe and having an accident. Thank you, you are a brave and thoughtful man! 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 Jun 04, 2014 5:06 pm
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Joined: Wed Nov 13, 2013 3:30 pm
Posts: 68
Post Re: To drive or not to drive
You have chosen wisely and selflessly Donald. That's the sign of a REAL man. :mrgreen:


Thu Jun 05, 2014 9:03 am
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