Driving - got Mom’s doctor to have “the talk” - I feel so guilty

SiberianIris

This is my first post. I apologize it’s so long.

My 94 y.o. mother was diagnosed with dementia in July (mixed ALZ/vascular).

I’d say she’s gone from stage 3 to stage 4 in just a few months. My brothers and I have been trying to get her stop driving. We encouraged her to take advantage of the on-call driver in her CCRC retirement community, or to call one of us.  (My brothers live in town. I live 90 minutes away and take her to doctor appointments.)

She wasn’t buying it, saying “I don’t need a driver, I hardly drive anywhere anyway.” For the past few years, she has voluntarily restricted driving to her retirement community and grocery store. She’s always been an excellent driver and taken great pride in it.

While she readily admits she has problems with her memory, she is also a textbook example of anosognosia and seems to have no understanding that her cognitive abilities have declined significantly.

I called her doctor’s office and asked for help. I found out that her doctor had ordered a driving assessment back in July, but every time they’d call to set it up, she’d put them off.

So, today I went with Mom to the doctor. He talked with her and put in writing that she was not to drive until she had the assessment. She is devastated. Her attitude went from ‘I hardly drive’ to ‘I’m stranded, now my life is over’. 

It’s like all the planning we did to ease the transition never happened. She has no concept that she’s 94 and that very few 94 years olds are driving (much less living). She thought it was unfair because she’s never had an accident. The dementia prevents her from understanding that we want to prevent an accident rather than wait for an accident. It’s amazing how her mind can’t grasp the things I want her to, but she remembers everything I wish she’d forget.

I feel so guilty!!! I feel like such a rotten person, because I got her doctor to do the dirty work. It hurt so much to see her so vulnerable and diminished at the doctor’s office today. 

Ugh, this just sucks, and I know that it’s just going to get worse, a lot worse.

forbarbara

welcome to our community. I am so sorry you have to go through this but hope you’ll find the support you need here.

You did the right thing. You cannot do this alone and there is no shame in asking her doctor for help. None.

Have you and your brothers done any planning? Your mother will need care and helping with daily living. Do you have aPOA and medical POA? She’s going to need your help with everything from paying bills to medication management. It doesn’t sound like this will be easy but her doctor may be able to help you.

i know others in this forum will add lots of good advice We’ve all been through the heartbreak of watching this disease progress in our LO. Be strong.

harshedbuzz

Hi and welcome @SiberianIris . I am sorry for your reason to be here but glad you found this place.

You did nothing to your mom. Advancing years and dementia are responsible for your mom's inability to be as independent as she thinks she should be. All you did was protect her and perhaps the frail neighbor in the crosswalk or the kid on the shoulder riding a bike she might have hit as her disease progresses further.

The other piece is that should she have had an accident, with a dementia diagnosis it's likely her insurance coverage is void and would not pay out. If you are her POA, it is possible that you could be held legally responsible for allowing her to drive in her current cognitive state.

It's a sad day and will likely not be the last of that kind, but it isn't something you did.

HB

Davegrant

My DW was diagnosed six years ago with MCI and the diagnosis has been changed to dementia at this time. One of my first experiences was with her PP reporting her to the DMV and requiring her to take the written test. The PP told my wife that she was a mandatory reporter. The doctor also told me to blame her (the doctor). I followed the doctor's advice and I have always been grateful that I did. My wife never passed the written test and she ranted for a year about it, but I was not in the line of fire. I am not sure I could have handled it at the time. This was the first problem I encountered as we began this journey.

harshedbuzz

Excellent point @Davegrant. Dad's neurologist banned his driving which allowed us to be his ally and validate his feelings. I was really grateful for that.

HB

SiberianIris

Thank you forbarbara, harshedbuzz, and Davegrant for your kind words. They REALLY mean a lot!

Yes, we have financial and health care POAs in place. We've been assisting with her finances for the past several years since our father died. She had no interest in it, so it wasn't a struggle.  

My brother just became joint on her bank account. Fortunately our parents were open with us regarding their finances and health care wishes for a natural death and no heroic measures. She a DNR and MOST form.

She’s been in the medication management program for the past few months. Someone comes in the morning and evening. She found it annoying at first, but has come to accept it and like the “nice cheerful ladies”.

I know she will need more assistance and supervision as time goes on. Like most people with dementia, she doesn’t think she needs it, but we are gradually bringing them on board.

It’s like dancing on a tight rope though.

Reading through the posts on this board, I’m aware that Mom’s situation is pretty “easy” compared what many on here are going through. I am grateful to everyone here that this is a place where we can learn and vent.

M1

Perhaps it would help to physically remove the car so it's not even an option.

Emily 123

Hi SiberianIris,

There will likely be plenty of emotional downs as things progress. You made a sound choice to let the doctor be the 'enforcer'. Part of the physician's responsibility is to provide the best care they can for their patient, and driving with memory impairment would put your mother and others at risk.

Because this is a big loss she may hang on to negative feelings around this, so in the long run, it's better that she doesn't assosciate those with you. We want to be honest with our loved ones, but their ability to process information and use reasoning is so impacted that work-arounds become useful. It's just hard to get used to at first.

Marta

Iris: you know you did not do this TO her, it was dementia that did. You did this FOR her. You did not go behind her back, you HAD her back. There is no guilt associated with this - only in your mind.

Iris L.

You are helping your frail mother, you should be proud!

Another Iris

SiberianIris

RE doing the driving assessment, my brother told me Mom now wants a second opinion from a different doctor and to talk with her lawyer.

He rolled along with it and didn't try to argue with her. He said just go ahead and get the assessment and prove the doctor wrong, and if she doesn't like the results, we could pursue talking with her lawyer and another doctor.

I guess she'll either forget about it or we'll do it. At this point, her cognitive issues are apparent, and she's not going to fool anyone. She's not going to like what they tell her either.

It is sad to witness her struggling and so exhausting trying to straddle our reality and her reality.

forbarbara

How strong is her memory? If you delay making the appointment will she forget about it? You might have to employ a fiblet or two (such as the doctor had to cancel) but trying to be rational with her is only going to frustrate YOU. She’s already frustrated, and frankly what you say or do isn’t going to help or hurt her. The disease has the upper hand. Find the ways that keep her safe and you sane.

SiberianIris

She's not going to forget about the driving assessment appointment or the fact that her doctor told her not to drive, however, it is possible she could forget about wanting a second opinion from another doctor and talking to her lawyer about driving.

Either way, we understand that trying to be rational with a person experiencing dementia is an exercise in futility. She's more likely to remember things when they're attached to strong emotions, so if it's something we don't want her remembering, we try to keep her calm, use fiblets, redirect, etc.

I AM feeling better now about the guilt I was experiencing yesterday, thanks to everyones' replies! 

😊



harshedbuzz

@SiberianIris

You may be spot on vis a vis mom not forgetting about the doctor ordering her not to drive. Sometimes PWD will hold onto recent memories that triggered strong emotion.

My dad did recall being told not to drive by his neurologists. He saw 2; an attending who rounded with an entourage in the hospital and a neurologist at the memory clinic and they both said "no driving". The man could not recall if he'd eaten lunch but remembered the ban on driving. He knew to ask every other doctor he saw about it-- his PCP, the pulmonologist, his urologist, mom's dermatologist. Most very kindly deferred to neurology on this with his urologist saying he "they don't let me travel that far north".

His geri-psych got the impression dad wasn't as impaired as he was because he could score freakishly well on MoCA and MMSE and showtimes like a pro at his appointments. He suggested dad could be evaluated for fitness to drive by a specially trained OT. I told dad I to make the arrangements and I would make it happen. It never did. By this point, dad would not have had the problem solving skills (executive function) to locate such an OT and make an appointment using a smart phone. Mostly dad aim his phone at the TV to change channels by this point.

We went through a rough middle and late stage with dad miserable about not driving. Cars and driving had been a love of his beyond the usual independence they bring. He was in turn angry and insulting which was hard and sometimes he tried to bargain as a 4-year-old might saying he'd shower if he could drive somewhere after. In the very late stages he finally let it go. That said, the very last conversation we had was me promising to drop a car off at the MCF "in case he needed wheels to go somewhere". By this point I was able to tell him that I'd leave it in the employee lot and drop the keys at reception which made him very happy.

HB

mommyandme (m&m)

My mom blamed me for taking away her driving privileges, even though it wasn’t me. Actually the police came in contact with her while she was stopped in the wrong area of a very busy street during rush hour. She was very confused of course. The police sent a notice to the DMV which suspended her license until she took a cognitive driving test. I was the one who discussed the DMV letter with her about the issue so she associated it with me taking her privileges away. Fortunately I was in town with her when the letter came. We also had a neurologist appt near enough to that instance and the doc told her she couldn’t drive until she passed the test. From that moment on, when she blamed me, which was often, I’d blame the doc which quieted her for the moment although the sideways glance and snicker aimed at me was persistent. She had no way to organize getting the test or taking it and she’d never pass it. She finally forgot.

I and her caregivers would reenforce the fact that it was time for her to sit back and relax, enjoy looking out the window while riding along since she worked so hard her entire life (true) and used to have to drive all the time. We likened it to her being like royalty and time for her to be pampered. She didn’t mind that idea. So cute. Moving on, so many times while I was driving her somewhere she’d say something along the lines of “good thing I’m not driving cause I’d have no idea how to do this.” That started around the same time she was in awe of all the buildings in the world and products on the grocery store shelves, “how in the world is all this stuff here and how did they do this?” The animal sanctuary was a hoot when we’d visit…”what are all these and how did they get here?” Such a strange disease.

You’ve done the right thing, don’t feel guilt (harder said than done). Grief about your moms declines and the difficult steps to take to ensure her safety are definitely standard but still very difficult, I know. I’m so very sorry for these struggles!

SiberianIris

What's funny is when she's being driven (which is much of the time for the past few years), she often comments how nice it is to sit back and watch the scenery.

I'll try the tactic of her being like royalty, I bet she'll like that.

I think the main thing that's really getting to her is that losing her driving privileges means losing an important status symbol among her peers in the retirement community. It's high school all over again. There are the same cliques - the "mean girls", jocks, cheerleaders, nerds, over-achievers, and trouble makers. Instead of designer clothes being status symbols, it's being able to drive, having your marbles, and walk unassisted (which thankfully she can still do).

Lots of gossiping goes on about who's "losing it" memory-wise. (I think she's getting some vibes on that happening to her, which is making her extra sensitive. She thinks someone in the mean girls clique "set her up" (her words) to get her doctor to stop her from driving.

Various suspicions like these have been going on the past few months and are ramping up. She also thinks people are coming into her apartment and stealing her eye glasses and pens. Even when we find the various items she was looking for, the idea that people stole her glasses remains, and she brings it up constantly.

Fully prepared for the driving thing to be remembered and talked about a lot for a long time to come. I can handle that as long as she is safe from causing a car accident.