Zoning out

[Labinma]

Hi all,
My PALS insists on driving. He has been and continues to. Its when we go on a family trip that I actually see first hand how he is doing. I have to say there is no swerving and he is slow, constant and safe basically. However, the other day he insisted on driving my girls and a girlfriend and her girls back from an activity. She and I both looked over and it looked like he was falling asleep. His eye lids on right eye almost closed. When he turned it appeared his other eye was fine. But basically it looked as if he was falling asleep. We were both concerned and I kept asking if I could drive and he is stubborn and said no he is fine. I said you were just basically shutting your eyes and he said I was? I just read that others have experienced this "zoning out". He also had a 2 day bout with constipation...that seems to be a big issue. I have insisted I want to drive going forward and basically going to insist that he take his own car if he insists on driving. He routinely falls asleep on the couch and looks asleep although I did see a couple of times it looked as if he was awake. Can anyone explain this to me, and also any suggestions or knowledge when driving needs to be addressed and how?
Thank you for the long winded rant.
Over and freaking out.

 

[affected]

How is his breathing and is he on bipap?
Can you update where his progression is at physically?

 

[Labinma]

Hi,
Breathing while sleeping are short fast breaths. No bipap. So far refusing any assistance of any kind. Very thin, can walk but only short distances, has a limp, Cant lift heavy objects. Facilations fast and furious in his chest now. Speech worsening by the week, but still understandable. Still going to work! Living on the edge here.

 

[lgelb]

This is a question to which the best answer is yours based on your beliefs and relationship to date. Not to be macabre, but if he drove his own car and died tomorrow, would your conscience be clear because he wants to drive, or would you think, "I should have stopped him from driving?"

Do you think his driving endangers other drivers, cyclists or pedestrians? If you want and he accepts a 3rd opinion, there are driving evaluators.

If you continue the conversation with him, be direct as to why you care, e.g. sometimes we value others' safety above our own.

As for zoning out/dozing, CO2 retention and lack of refreshing sleep are certainly the top contenders. If constipation is a big issue, I would address that as well since it can contribute to fatigue.

Best,
Laurie

 

[Labinma]

How do you tell a 52 yr old stubborn man's man with ALS he cant drive ;(. I don't believe I have any control over this, only in how I can control my actions which is to not drive with him anymore. His mode of coping has been denial, and not a lot of communication on what he is going through. I honestly don't know how to handle it. I have pointed out my observations, concerns re the driving strongly lets say. In general he is a responsible guy. I am sort of trusting he will make the right decision at this point. Yes, lots and lots of fatigue. Ugh.

 

[affected]

Well one avenue may be to check the insurance status - if he caused an accident and has not declared his neurological condition, his insurance company can refuse to pay out and you could lose everything.

Also, how would you cope if someone else was killed?

PALS may have lowered response abilities due to loss of strength and spasticity. If he wants to continue driving he should have an evaluation so that insurance coverage can be ensured and his safety evaluated. I know my Chris would NEVER have agreed to this!

This was a truly terrible time for Chris and I because he believed he was fine to drive and knew he was not. When his doctor finally asked him to hand his licence in he was furious with me because I did not fight for him to keep driving. It was awful.

Maybe you should talk to his doctor and ask for him/her to take this up?

 

[EliSjo]

I gave up on driving already while I was waiting for my diagnosis. I felt I could no longer trust my body and muscles to respond in time, or even respond correctly. I never perceived any issues myself or had any incidents - but I just didn't dare to rely on my body to give the right response if something happened.

Having said that, it was a hard thing to do. I've always loved driving and giving it up meant giving up a lot of freedom and independence. Of course, since then I've had to give up on a lot of things regarding my independence, but this one felt major.
So I guess I'm saying I understand both sides - but I think this is an argument you're going to have to try to win. Can't be easy if his mode of coping is denial.

Besides the excellent suggestions in previous posts, perhaps you can suggest other modes of transportation, subway, bus etc. Or get him one those electrical scooters for him to still be able to get around on his own. If that's still possible given his physical state.

Best of luck, Elisabeth

 

[Kristina1]

Would he listen to his doctor? If the doctor told him emphatically it isn't safe for him to keep driving?

My father in law (mid 60s) had terrible cataracts and his vision was incredibly impaired but he refused to stop driving. He would ask his wife to read the road signs for him because he couldn't see any of them. It was scary for all of us knowing he could have a serious accident and injure or kill himself or someone else. We never succeeding in persuading him to stop driving. He finally had eye surgery so it's not an issue now, but I can emphasize with the stubborn older man thing. I'm sorry.

 

[Nuts]

This is a tough one, but it's important that you address it. Our ALS clinic used to routinely check my husband's reaction time with feet by putting a phone book on the ground and counting how many times he could jump his right foot back and forth (simulating gas to brake) in a minute without touching the book. Falling asleep is another issue, and CO2 retention could be doing that and compromising his thinking. Short shallow breaths at while laying down is a sign of diaphragm impairment---which leads to the Co2 problem. I'd talk to his docs. Ask that he be tested. They can tell him not to drive. In the meantime, I wouldn't ride with him either. It'll anger him, but your safety and that of your children is important. The liability issue is also one I'd be bringing up to him.

 

[Nikki J]

Agree it is a very tough issue. We had to take my mom's keys- literally. But it is tougher with a spouse and a male one. I admit this scared me so much I went and looked back at our emails to see exactly where you live. And i know your public transit options are probably nil- like mine are.

In Massachusetts unless they very recently changed the law doctors are not mandatory reporters which puts them in an awkward place as reporting could violate confidentiality laws. However, your doctor can definitely tell him and the the liability of driving when you have been told no is immense

I was unclear from your post are you still allowing the children to ride with him?

This is so tough and I get that he is an adult and a stubborn one. If he were the only one at risk I would agree let him decide but that is not the case.

 

[chally]

Giving up driving can be tough for some, if a person is really not listening to others concerns then I think I would take action.

Are you friends with any cops in your town? If so next time he goes out ask one of them to pull him over for swerving or left on center,this might be the " hint" he needs.
Just saying , good luck!

 

[Labinma]

Thanks all. Yes, so tuff. My girls are not riding with him basically or will not be. I know it is important to allow an individual to process this disease their own way, but lately I just don't think he knows what he thinks about it as his body continues its downward spiral. Trying to be the good, passive wife, honoring his wishes, and keep this whole thing on the down low is ridiculously hard. I feel like he is looking at me lately like I cant believe what is happening here. Whereas I have researched all of it and understand most of it. Suggested everything I could, especially at crucial time frames. But he is his own person and I guess I will never understand the magnitude of how truly hard it is for the individual experiencing it. Very personal experience and therefore personal in how they want to contend with it. I wish I was able to help. Feels like I am forced to go down with the ship while the captain stands at helm and refuses to grab life preservers. Determined to go down with his ship. But, I have a life boat unhooked on standby and holding on with my two girls until it sinks entirely. UGH.

 

[Manhattanite]

I believe that there is a way to notify the DMV that a driver has become unsafe to drive due to a medical condition. I imagine each state has different rules and procedures - in some states an individual can file the report. Perhaps if your PALS were to receive an official DMV notice revoking his driver's license he would stop driving, although it could result in anger or depression.

This option sounds a little extreme to me but when you weigh it against saving other human lives it is a reasonable option.

Good luck and I hope things work out for the best!

 

[Nikki J]

Anyone can report in MA but confidentiality is not guaranteed. If medical and police report they can take a license away without hearing etc. private citizen they will investigate and possibly test first. The process is on the dmv website

 

[affected]

I do think this is one of the hardest ones because I totally advocated for Chris because it was his body, his life and his disease.

But driving a car puts other people at risk and I don't know how I would have coped with the death of a child had Chris caused a car accident involving others.

I hope you can find a solution - I would truly start by talking to his doctor.

Chris's doctor was shocked when she found out he was still driving as she simply presumed he had given that away long before.