Driving(10)

PlentyQuiet

DH was diagnosed with EOAD in Nov 2021, at that time his MMSE was 24 and he was okayed ny Neuro to keep driving. Follow up in May 2022 was the same. 

DH is well aware of his diagnosis and has always said that when I feel he can no longer drive he will stop, and I believed it. 

This summer I was noticing that while his driving was still fine, he was unable to hold two ideas at the same time and decision making was harder. I set him up for a driving assessment with OT.

A week before the appointment I told him the stress of having to decide when he was done driving was just too much for me. Worst case scenario: he kills someone's child. Eventually he would forget this ever happened. Blissful ignorance. I, however, would remember to my dying day that someone lost their child because of me. Because I did not stop him soon enough. This thought is more than I can bear. DH understood and agreed to stop driving but didn't think it was really time yet. So we kept the appointment as a third party decision maker. 

His MoCA score was 19 and he struggled with  executive functioning. Watching him struggle to do math and do the logic tasks was hard. Memory items and orientation he did fair on. The OT explained that driving was no longer safe. DH agreed. 

He never got lost, disoriented, or confused while driving so the usual markers for when to stop didn't help us much. To see the lag in executive function made it really clear. 

He had 9 months of driving after diagnosis without incident, but he is now done. His car will be gifted to the college daughter as that is what will bring him joy. 

It's hard to know in these very early stages when to stop. I'm glad he had those months of driving because it allowed him to continue volunteering and meeting socially with friends with some independence. I think this has helped, we were able to ease into changing our habits, patterns and roles. 

Early diagnosis gave us more awareness, a smoother transition to the new normal, and the chance to talk about the things that really matter and the future. I am grateful for this, but there is no denying the mile markers when they come. 

EllisA

Thank you for the brilliant summary of his terrible struggles, and yours.  I am very Glad you came to this positive point of agreement this soon, before anyone got hurt!!!!!  It really takes a strong man to admit this is happening and that is best for both you and others to make significant life style changes.  I know they will be hard, however He his guiding each of us through this journey.  Please remember you have a lot of support here.  DO NOT be afraid to reach out, to share and ask for helpful suggestions.

I am the patient and it has really Helped ME.  Thank you again for sharing, and your encouragement to all of US.

May God Continue guiding both of you along this life journey!!

EllisA.  It would be nice to have you two as a connection, if you want,  I just don't know how to set that up.  Have a fantastic safe Labor Day weekend  Bob from  Billings, MT

Hoot619

I wonder how many of us caregivers are lax in this one. What you said, that if something happened you would be blaming yourself.  When wife was reported by the Doctor that she had Alzheimer's (state law ) and DLB called her in they pulled her driving privileges.

I wasn't to happy with them, but within a month or two she was going downhill and I was glad of it.    With the disease and  LO's driving makes the accident lawyers happy. They can't lose but we can lose everything.     I  hope this one gets us thinking- being too late on this one could cost us dearly. Hoot

MaryG123

Your experience is very helpful PlentyQuiet.  Thank you for sharing it.

Faith,Hope,Love

I'm so glad he was agreeable to give up driving.  That makes it so much easier for you.  And, how perfect that he could gift his car to his daughter.  Thanks for a great post.  So many people have a lot of problems getting their LO not to drive any longer.

By the way, love your avatar it really made me laugh.  I can totally relate to it.  Right now, I've got fluff-bums waddling all over the place.

mrahope

I am struggling with this issue myself, but DH, diagnosed in 2020 with MCI, thinks he's fine. At our latest neuro visit we were told he should only drive in good weather conditions, daytime, and not on highways.

DH knows I'm worried about his driving and if I am going along he almost always leaves the driving to me.  However, if I'm taking a nap or otherwise occupied so I don't see him, he "sneaks out" on his own. Sometimes he gets lost trying to go somewhere, but has never been unable to get home.  It's so sad that he knows his short term memory is going and is so frustrated about it.  

FWIW, we are awaiting a second round of neuropsych testing in early November and then a follow up visit with the neurologist, who has told us that he "doesn't think this is early ALZ".

It's so hard to gain true clarity on this issue...

storycrafter

PQ, it's very helpful to read about you and your husband's process, and your observations and thoughts on it. Such an important thing to consider, and yes, it's hard to know sometimes when to call it. Thank you for posting.

jfkoc

Getting "lost" is the least of what could happen.

Bob in LW

My SO is still angry about being unable to drive, but her son, who has DPOA for her affairs was told by his attorney that if she continued to drive and had a serious accident which was her fault, he could be liable for allowing it, knowing that she had been diagnosed with early dementia.  Caregivers should be aware of the risks to themselves for allowing their LO to continue driving.

Faith,Hope,Love

I agree Bob.  My attorney told me that the moment DH was diagnosed with FTD to make him stop driving.  He said if he were to get in an accident all it would take is the opposing attorney to see the dementia diagnosis and we could lose everything.  You are right, he said it ends up becoming the care givers responsibility.  My problem is that DH is obsessed with wanting to drive.  He's always looking for the keys (which are very well hidden) and wanting to go off on his own.  I guess it's hard for him to give up his independence.  I just pretend I lost the keys and after a while he settles down.

PlentyQuiet

jfkoc - I agree that getting lost is the least of the problems that could occur. However my post was more about the struggle of having to decide when to have an LO stop driving. All the guidance about warning signs for driving follows what the Alzheimer's Association says:

Signs of unsafe driving

Determining when someone can no longer safely drive requires careful observation by family and caregivers. The following list provides warning signs that it's time to stop driving:

• Forgetting how to locate familiar places

• Failing to observe traffic signs
• Making slow or poor decisions in traffic
• Driving at an inappropriate speed
• Becoming angry or confused while driving
• Hitting curbs
• Using poor lane control
• Making errors at intersections
• Confusing the brake and gas pedals
• Returning from a routine drive later than usual
• Forgetting the destination you are driving to during the trip

DH was not showing any of these, but I was still uncomfortable. So the OT driving assessment picked up on his declining executive function and was able to give us a definitive answer. 

I think for those whose LO was diagnosed beyond these very early stages it is an easy call to have them stop driving. But those LOs may have been driving when they were at the stage DH is in, they may have just been undiagnosed. 

I know there are others on the boards with a LO in the very early stages, and if you search you will see a lot of "Stop driving now!". So I wanted to share the decision process we had for someone who was diagnosed far earlier than most. 

toolbeltexpert

PQ your a model for folks who are coming In as newbies, but some  maybe just getting to that point and the earlier the better. My dw had got lost once,that was enough for me. She still thinks she could drive but in the ncf she has no access, although she still talks about it.

jfkoc

PQ....it was just meant in general...sorry.

I remember all to well being where you are with the driving....a very difficult problem.

Stuck in the middle

Driving is the hardest thing most people do.  It seems easy because we've done it so long, but it isn't, because you have to know what to do when things go wrong (like a child chasing a ball into the street from between parked cars) and do it RIGHT NOW.  If a PWD has difficulty with anything at all, it is time to stop driving.

saltom

My DH stopped driving many years before Dementia diagnosis when he told a counselor he had twice stepped on the accelerator thinking it was the brake. The counselor was a mandated reporter and called me to come get my DH and have someone come with me for  his car.  I think DH was relieved as driving was becoming less fun for him, and he did not contest loosing his license. He has a DMV issued ID now instead of the license.  His doctor recently told me to hide the car keys even though DH hasn't driven in 8 years.  The disease can play tricks with the brain and he might get the idea to try driving.  One set of keys is always in my purse where DH can't get to them and his old set is tucked away in the back of a drawer DH never goes into.

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MaryG123

PlentyQuiet, How did you find someone to do the driving assessment?  I am doing the driving now, saying that it’s temporary while he undergoes neuro testing, but I would like to set up an assessment as you did.

PlentyQuiet

Hi Mary, 

We had a referral placed by Neuro for the OT driving assessment. This was fully covered by insurance, and we were able to get a spot only a few days later. They gave DH the MoCA and would have done a peripheral vision and reaction time assessment if he had been borderline (or stubborn).  They also gave a list of places that do the full knowledge and behind the wheel assessment, but those cost several hundred dollars.

Luckily DH is okay with the result. For now anyway, who knows what will happen in the later stages. I traded in my old car for a new to me one that DH is unfamiliar with. It has a proximity key and push button start and that mystifies him. We made a big deal out of him gifting his 2014 car to our daughter, trying to leave the lasting impression that stopping driving was the safe thing to do but also a great parenting move. 

Hope this helps

MaryG123

Thank PQ!  That’s very helpful. We have a neuro consult in a few weeks so I will ask the doc then.

Katielu

So, I found this by searching driving, this has helped me and it will be a struggle, it the driving will now have to stop. His executive function is gone, so shall be the keys.

thank you

RickM

What a great thread of posts! Thank you to everyone, especially PQ for starting it.

After my mother called her neighbor twice to help when she was lost. After police suspended my mother’s driver’s license after a stop and she couldn’t answer their questions and suspected cognitive impairment. After her doctor signed off saying she was capable of driving. After my mom took a driving class. After she bumped into a car on her first driving evaluation with DMV. After they let her come back and perform another evaluation. After she passed and got her drivers license back. After all that I did what I had to do: As she put it, “I stole her car”. I also found her a new doctor.

ButterflyWings

Rick, what a coincidence. My DH's car disappeared too! 😉

CStrope

PlentyQuiet, by the time my DH was diagnosed he only scored a 17 on the MMSE, but his doctor told him it was still okay for him to drive locally!!! I was shocked. 5 months later when I was trying to find the best way to stop his driving I asked the doctor to help me facilitate the situation and recommend he no longer drive. His doctor replied that it was not his responsibility to tell him he should no longer drive!!!!!! I was furious! He had no problems telling him he still could drive, but suddenly had a problem telling him he could not drive. I printed off a street sign test off of our DMV's web site, and when he failed it miserably I was able to explain to him the liability of him getting in even the smallest of accidents. He finally complied and I took his license and bought a new car with a push button start that he couldn't figure out how to use!

ImMaggieMae

It’s truly frightening that some of these doctors would give a person the ok to drive when they are obviously impaired. I wonder if asking the doctor for a signed statement that the PWD is capable of driving, “just in case they were involved in an accident and sued” would make a difference?

Ed1937

Would that doctor allow his baby daughter to ride in the car with him? Some doctors are in the wrong profession. I know what my wife was like when she scored 17.

CStrope

Just as a follow-up......we have switched doctors!

Ed1937

Great choice!!

Katie Roo

My hubby hasn't driven for awhile. He pretty much did it himself when he had some anxiety leaving the grocery parking lot. When he explained it to his doc, doc said (in his tactful way) that DH wouldn't want to be driving, get confused and somebody got hurt. Confirmed no more driving to us both. Even though DH has said he misses driving and being able to just go by himself, he knows he can't. So glad we have a doc who listens and looks out for what is best.

RickM

Katie,

That is excellent. I imagine it's so hard for physicians to do that. No one wants to do it. I've experienced two doctors for both my parents that were reluctant to do that and I had to take action on my own. I wish more physicians would do what they have to do.

CheleInFl

I am having issues with my DH and driving. He was a paramedic when he worked and was use to not having to make stops or complete stops while driving the ambulance. We he seems to think that is ok in the car too. His driving scares me and I've told him to no end. To take away his driving will just kill him as that is what he always wants to do.

LJCHR

I was very fortunate. I convinced my DH that we didn't need 2 cars as we went everywhere together around the time our twin grandsons turned 16 and got their driver's license. We gave my DH's vehicle to the grandsons. He was very proud to help out the kids. He doesn't drive my car so it was a win-win on the driving. He said he misses driving, but never asks to drive.