I took the car away

LaurieRZ

I feel like I have such a long way to go with this horrible disease and I'm already so stressed. My mother got lost in her car 1 1/2 weeks ago. After 6 1/2 hours and 3 police departments we finally found her. I kept her car at my house the 1st today and then she suggested we let my son borrow it until he got a new car. She called every day asking where her car was. She thought it was in the parking lot of an apartment. No one we know lives in an apartment. Every day I had to explain who had the car and she would tell me she wants it in her garage even if she can't drive it. I finally took it back to her house. I kept the keys and disabled the car in case she has a spare set. Now she calls every days to ask who has her keys and tries to convince me she's okay to drive. At first I told her the police filed a report saying she's not allowed to drive. She kind of seemed to accept it, but then starting trying to convince me she'll be fine going to the local places she always goes. This morning I decided to tell her we will get the Neurologist's opinion when we go next week. I feel like these are compassionate lies, because I'm trying to reduce the conflict between us. I've read things they say to acknowledge how they're feeling, but my mother has never been a person in touch with her feelings, so that doesn't work with her. Is this something I have to deal with until she finally forgets and do they eventually reach a point of acceptance?

She mentioned she would be willing to take an assessment to evaluate her driving skills. This is something I had already checked into, but hadn't mentioned to her yet. Since the car has already been taken away, I wonder if it would be worth doing this. I would probably have to make up the time I miss from work, which gets exhausting after awhile, but it would be worth it if it would help her finally accept it. If she's likely to claim they don't know what they're talking about and she's fine then I don't want to bother.

Before anyone questions whether she should be living alone, the car has been such a big event, I don't even know how to deal with the living situation. I mentioned her coming to live with me and it's not even an option as far as she's concerned. BTW, I'm an only child, so I'm trying to figure this out alone. I have the support of my sons, but it's not the same as have a sibling go through it with you. I did set us some appointments with a therapist for myself, which hasn't started yet.

Rescue mom

Others will have more, but right away I can say that “out of sight, out of mind” usually works best (not great, but better). Unclear how long it was gone before, seems like it could not be long since she just got lost 10 days ago. . Hopefully  you can take it away again. 

You are absolutely right about the compassionate lies (we often call them fiblets). Tell her it needs work to comply with new laws, or new insurance regs, whatever works. Then take it away, and this is the hard part, you have to stand firm. Tell her parts are needed, it’s being worked on, the mechanic is on vacation, whatever works at the moment. She will forget soon.

It’s really hard, but it’s like dealing with your kids when they were little. You didn’t let them play in the road, or eat only cake, or stay up all night,  even if they pitched a fit. You had to protect them when they didn’t know better. This is what you’re dealing with again. Don’t negotiate, she won’t remember and she’s not acting from logic anyway. You just have to take charge—or get ready for tragedy. 

Keep in mind many insurances will not cover accidents/damage—and certainly not resulting lawsuits that often happen—by a driver with her record. She could lose everything in a lawsuit, regardless of any charges or fault.. That probably won’t matter to her now—she’ll say she won’t have any—but it might help your resolve. And having another “police search” may lead to other serious problems.

quartlow2

You're in my heart (and prayers because that's just the way I am). I've heard that, although there are some commonalities, every person with dementia is different. There's no telling how long your mom will want to drive. Taking the car away is such a hard thing. We were sometimes able to figure out what Mom wanted or needed to drive for and provide those things so her need was met. But it wasn't easy because she had aphasia; which jumbles words.

And, in my experience, you are exactly right about the compassionate lies. I went along with my mom's thoughts that I'd "received a baby from a woman who couldn't care for it". She was sure of it. So was so happy for me! When I realized she couldn't understand me over the phone, I played along with it until I was able to tell her, in person, that the mother recovered and she was able to take the baby back. My Dad and brother were uncomfortable with the lie but they couldn't convince her either. I've never been able to bear children. So I thought it was so sweet of her wanting me to have that dream fulfilled.

I believe in something I've come to call "muscle memory". We develop habits that are ingrained in us the longer we use them (like jumping in the car when we need to go somewhere). Those habits, or developed responses, take over our body when our minds can't reason accurately. It's a defense mechanism of the brain. It's the reason there are safety briefings on every airplane flight and fire drills at school and work. They ingrain patterns in our brain that will help us through a traumatic event that disrupts our reasoning. Dementia definitely disrupts our reasoning. My mom refused a diagnosis of dementia because her mother, uncle and sister died with it. She wanted to find a cure before someone convinced her to give into it. So, I didn't get a lot of help understanding it; other than 2 siblings who were right there with me. A therapist for you, who is familiar with dementia, is a very good idea. I can't imagine doing it alone.

You are on the right track. Trust your instincts. You know your mom better than anyone.

dayn2nite2

Actually your situation is exactly like many of us who have siblings that are uninvolved.

No to setting up an assessment.  That prior episode is an example of why she should never drive again.

Do you have POA?  

​fesk

I agree there's no need for an assessment. You have your answer. It most likely would not make a difference with your mom.

  

There is the fiblet option and there is the option of honest/firm. You know your mother best and what may work. When we were in this situation, it sounds as if my mother was at an earlier stage. We simply told her we were concerned for her safety and the safety of others. She did not like it, but luckily she was compliant. She did remember for a very long time. She would say we took her car away. She wasn't difficult about it though.

  

Another fiblet suggestion, if she's taking any new medicine, you can try saying the doctor doesn't want her driving until she adjusts to the medication. You may need to try a combination of things.

You might want to look into getting a caregiver that can take her places. If she can get to where she needs without driving, the car will become less of an issue.

It might be best to try to figure out the living arrangements now and get everything done at once. We presented my mother with 2 options. Have someone stay with her 24/7 or stay with one of her children. She didn't like that either but, again, we said it was for her safety. Also, nothing is permanent, so an option can be trialed and, if it doesn't work, something else can be considered.

I am sorry you are going through this. Keep posting as there is a lot of good advice and support.

LaurieRZ

Thank you for your advice. I will forego the assessment. She recently got a notice in the mail about a recall on her car. I may say I'm taking it in for her and, like you mentioned, say the part is on back order. I have a feeling she will accuse me of lying, but I'm just going to hope it doesn't take long for her to forget.

I do have a DPOA. It's was tough getting her to agree to taking care of all the legal documents a couple of months ago, but I feel like we did it just in time.

HollyBerry

I give you a lot of credit for acting swiftly and decisively to take the keys and make it impossible for her to use the car.

My brother should have done this for my mom. Instead, we paid insurance and patking for a car she never actually drove. She couldn't figure out how to start it. But she wanted to look out the window and see HER car.

My partner has AD and has had two big episodes of getting lost. Long story, the DMV retested her and requires a yearly checkup and form filled out by her provider.  I predict next year she won't pass, and then she'll be totally stuck at home. At least now she can drive 3 miles to volunteer twice a week, which is the only thing she has left that she can and will do on her own.

What plan do you have for your mom getting to the store or just getting out of the house if she can't drive? My partner won't take a cab or Uber. My mom just wanted to go someplace, anyplace, and was pretty amenable to organized events if she had help getting in/out of the vehicle. What can you offer your mom in place of the freedom she wants?

LaurieRZ

The interesting thing about the DMV is their website said they would request an additional assessment if a person 79+ showed any concerning signs when renewing their license. I took her to renew it early in hopes this assessment would happen. I even took someone aside when we were there to request an assessment. She told me their hands were tied due to HIPPA, which makes no sense at all. My mother appeared okay until they asked her to stand in front of the screen to have her picture taken. She started walking across the room and the lady had to call her back. She then put her nose to the screen and the lady had to tell her to turn around. The lady looked at me and asked in an annoyed tone if she was still driving and I told her she was. She then completed the process and renewed her driver's license.

My mother got lost once before (that I know of), but she realized she's was getting into an area she wasn't familiar with and turned around. I relayed this to her neurologist and he said we should agree to keep her driving to a 5 mile radius. We had already agreed she would only go to two stores and she had strayed from that plan.

I know I'm ultimately responsible for her and it was up to me to take the keys away, but not having gone through this before, I was looking to the professionals to help determine when it was no longer safe. 

I live about 10 miles away, so right now I'm taking her grocery shopping on the weekend to get her groceries. I honestly don't know what else I could offer her in the place of her freedom. She's a bit of a loner and doesn't enjoy socializing.

mommyandme (m&m)

My mom got confused on the road and was stuck.  The police actually submitted a notice that she was compromised in her driving.  At that same time her neurologist wouldn’t sign off on her continued driving unless she got the assessment. We didn’t do the assessment. She blamed me for quite awhile of taking her driving privileges away. I could honestly say it wasn’t me but she didn’t believe me.  We already had help coming in a few hours a day so they took over driving her to wherever she had to be.  I just told mom “it’s time for you to just relax and enjoy the ride.”  I tried to emphasize that she’d to be taken care of now, like she had always done for others.  She could just enjoy the view instead of worrying about traffic etc… it helped.  She finally forgot.  She’d say things later like, “good thing you’re driving cause I’d have no idea where to go.”

My mom also refused to move for the longest time. When I assured her over and over again that we could bring two of her cats, she did finally agree.  (We brought the cats).  Anyway, we were at a time that honesty worked.  Although fiblets are our friends too.  

I’m very sorry you’re feeling so alone.  My brother does help me from another state but not with the day to day.  I understand the anxiety you’re having as I’m making decisions right now that make me nervous.  I hate waking up with nerves. I hate this for you. Sometimes we’ll feel less stressed when the decisions are made and we move on to the next terrible thing.  

Luis Fernando Mendez

Hello, good afternoon to all the caregivers in this forum. My name is Luis Fernando Méndez Vargas, I am a psychology student in Colombia. I am currently doing my undergraduate thesis in psychology with informal caregivers of Alzheimer''s and Vascular Dementia. The research deals with the positive experiences that could be perceived in the experience; specifically it is about the psychological benefits of self-efficacy, self-compassion and resilience in this population. I am doing my research with people who are and who were caregivers of some of these 2 dementias. I divided this population of interest into 2 groups:

Group 1: people who at the time of the meeting with me, are currently in their role. Namely; the recipient of the care is still alive (I already have this group complete)
Group 2: people who have been informal and main caregivers of any of these dementias; that is, the recipient of the care has already died (I only need one person from this and I am looking for a former caregiver of someone with vascular dementia)
An interview will be held with the person who is interested, I am looking for a former informal caregiver of someone with Vascular dementia.
Requirements:
1) be of legal age (+18)
2) having been an informal and main caregiver for this dementia (vascular dementia)
3) The gender and nationality of the caregiver does not matter (if they are from another country, the interview will be by video conference)
4) Be Latino and/or speak fluent Spanish (could be a Puerto rican, colombian, cuban, etc.).
Important: 1) a degree of confidentiality will be handled (there will be an informed consent). 2) the caregiver will have access to the transcript of the interview and the project, when it is published (2023). 3) will have an acknowledgment in the acknowledgments space of the project.
The person who is interested can leave a mesagge in my email box ([email protected]), I will contact him/her to arrange the meeting.
And to all the caregivers on this forum, I understand what you are going through, my grandmother had vascular dementia.
Thank you!

[Deleted User]

The user and all related content has been deleted.

Stuck in the middle

Due to her diagnosis of dementia, your mother will be blamed for any collision regardless of whether she actually caused it.  It will be just like driving drunk, without the jail time.  Driving risks painful, permanent injury for your mother and the loss of everything she owns, even if the crash doesn't kill her.  Getting lost is the least of what can happen to her if she drives.

May flowers

I’m our case, I’m kind of glad we got the driving assessment at the neurologist. Driving was a big deal for my FIL and he argued with us constantly over it. After the test, the neurologist told him point blank that he cannot drive again, that his reaction time, poor judgment and poor eyesight meant that he was going to have an accident and possibly hurt or kill someone. He was at an early enough stage that he accepted the doctor’s advice, and handed over the keys right there in the office.

He still liked seeing his car in the garage (but we had all the keys). It made him feel less confined, I think, but he never asked about driving again. I’m not sure if that was the right call, out of sigh, out of mind may have been better.

We had one setback soon after taking the keys, when my SIL came to visit (one of two visits in 5 years), she refuses to listen when we share where he is cognitively. We told her he could not drive. She ignored us and decided to let him drive her to the grocery store a few miles away. He could not stay in his lane, had no depth perception and nearly ran into cars in front of him more than once and ran through a red light. That was the same visit where she decided he should be able to see all his bills (we had taken all of that off his plate and finally alleviated his anxiety over bills and money). That led to a two week meltdown over finances - it took us a month to get back to his acceptance of our handling things and driving.

CatsWithHandsAreTrouble

About 2 years ago, before mom got dx with Alzheimer's, she got into a slight collision with a pickup truck and we took her keys away since we knew something was up but not exactly sure what. We should have gotten rid of her vehicles right away but haven't yet. Now I'm not even sure we can get rid of them since we're looking into placement for her and don't want to mess up the financial aid...

I also echo the others that getting rid of the car is the best option available for everyone 's safety and peace of mind. Eventually "out of sight, put of mind" would work for her. I'm so sorry that she's so far away from you and you're having difficulty making the correct adjustments for her. 

harshedbuzz

Laurie-

Let me start by saying this phase, where the relationship between parent and child is transitioning is transitioning into one where the latter becomes caregiver is really difficult emotionally. I have found getting all up in my parents business uncomfortable, awkward, sad and just icky at times. 

You have already done some very strong work around keeping you mom safe and protected- kudos to you for getting the DPOA and car keys and for adopting the therapeutic fiblets as needed. Also, a shout-out for recognizing the need to take care of yourself in all of this by seeing a therapist. In my mom's dementia journey with dad, a therapist was critical to her well-being as every other medical professional we saw put dad's needs and even preferences ahead of what was best for mom. 

I hear you on feeling alone in this as an only child. IME, the fully functional family of sibling who are able to work together collaboratively and share the burdens of caregiving are unicorns. There are countless members here who are doing the yeoman's share of the physical, emotional and financial heavy-lifting while their sibs are living their best lives. Often, these same sibs are the ones who've abandoned their parents or undermine your care decisions often in the pursuit of protecting a potential inheritance. My sister died in 1994, so I have been an only-in-fact caregiver for my parents which has made the task easier than it would have been otherwise.

We were fortunate that dad's neurologists both banned him driving. We were also fortunate that this happened fairly early-on and was so emotionally traumatizing to dad that the memory stuck. The loss of driving fell really hard on dad; cars were a life-long love for him. He was constantly machinating scenarios in which he could drive well into the later stages. For a time, I agreed to take him for an OT evaluation if he would make the call and schedule it. I was fortunate that he no longer had the executive function to make that happen. This is an option for your mom. Testing for fitness to drive is not covered by most insurance and was about $500 5 years ago.

Driving evaluation and rehabilitation programs | AOTA

In your shoes, I would disappear the car. The recall, waiting for a part due to "supply chain issues", rinse and repeat is a good suggestion. Mom was still driving, so we had to hide keys which is harder and rely on reminding dad he was no longer covered by insurance as he had an Alzheimer's diagnosis even if he didn't agree and could lose everything. I did a lot of validation in the form of "yes, it sucks and is unfair, but I'll drive you where you want to go".  Dad never got over not driving. The day he died he made me promise to bring him a car so he could go somewhere if he wanted. By that point I could ask which one he wanted and promise to leave it in the employee lot which made him happy.

(My mom doesn't have dementia, but she had to stop driving because of a vision issue- her optic nerve was damaged and she can no longer judge distance reliably. I asked the diagnosing neurophthalmologist and he said she was fine to drive. Ugh. After her second rear-ending accident (girl totaled her 2 cars and 3 others in the span of 60 days), she stopped driving. But she injured a woman in the 2nd accident and was sued which was really hard. The time it took for the suit to work its way through the system was almost 2 years during which time a PWD would have progressed in their disease which would not bode well in a court room.)

If your mom is in the earlier stages, I would consider something like this

GoGoGrandparent | On-Demand Uber & Lyft Rides for Seniors 

It's a concierge version of ridesharing. The senior can call and 80 number to arrange a ride and the service oversees it. When my mom does this, I get an email confirming when and where she goes. 

Many PWD has some degree anosognosia which means they are unable to appreciate that they have had a shift in their cognition and abilities. While this protects them from the horror of what is happening to them, it does make keeping them safe even harder. This means you can't reason or expect cooperation in making necessary steps to look out for them.

I won't get on you about why your mom is still living alone, but I will suggest you create a ruse to spend several 24/7s staying there and observing. Is the house clean? Are their scorch marks on the dishtowels? Is there rotted food in the fridge? Does she sundown in the later afternoon or evenings? Is she engaging in any paranoid behaviors? That information will give you a better sense of where you are. I have a friend whose mom lived in the same subdivision and saw her mom daily. She knew mom was slipping and planned to move into a bigger house with her. In preparation for selling mom's house, mom moved in with her and friend prepped mom's place to sell. The experience was an eye-opener and this was a woman who spent about 6 hours a day in her mom's company.

Good luck.

HB

Bob in LW

Laurie, as you read the posts here, you will see that giving up driving is the most traumatic thing many will experience.  My SO had to give up driving about two years ago and she is still angry about it.  Her son, who has DPOA and is also the trustee of her properties, was advised by his attorney that if he allowed her to continue to drive and she caused a serious accident, he could be held liable.  You are doing the right thing.

LaurieRZ

I messaged the neurologist to let him know what happened and that I had taken the car away, but my mother may want his opinion at our next appointment. The nurse replied that he would probably order a driving assessment. I'm not sure why that wasn't mentioned at our last appointment when I expressed my concern about her driving. I told the nurse that since the car had already been taken away, I didn't want a driving assessment unless that is the only way he would support her not driving. I'm not sure what will happen with that. I also asked if there was any type of assessment to help me determine if she should be living alone, but she didn't answer that question. It's not something I really want to ask in front of my mother. I feel so awful when  the doctors ask me questions in front of her and I'm supposed to tell them about how she's failing as a functioning adult while she sits there and hears things she's not aware of and probably feels like I'm betraying her. Is that the way all doctors handle it? Don't they think about the patient's feelings. It seems like they should talk to the family member first and then bring the patient in.

Like some of you experienced, I worry she will not quickly forget me taking her car. 

Yes, this transition is harder than I thought it would be. She was more like my friend than my mother. She would have done anything for me and, as adults, we've never argued. She hung up on me one day recently and I feel like there's an underlying tension since I took her car. I felt like I was ready to be the caregiver, but I wasn't prepared for her to feel anger towards me. 

Rescue mom

About the “miles”: last Christmas a woman with a history of dementia caused a wreck (driving the wrong way on a one-way street) that killed her, the other driver, and hospitalized two passengers in the other car. 

Her grieving family was on TV news sobbing, “she only went to the store, it wasn’t a mile away,”. Etc. The PWD family was hit with a multi-million lawsuit., I don’t know how that turned out, but news covers a lot of those being lost in court.

My own DH was brought home by police after getting lost in the car. He was involved with an accident; after getting lost and being unable to say where he was going or why he was there.

. He was driving to his doctor, less than 2 miles away, where he’d gone for 40 years. This was actually his first big concrete (not just “forgetful” or “not in the mood”) problem, which led to his Alzheimer’s Dx.

I live in a retiree area, it makes frequent news when dementia patients are involved in accidents, and when they’re in court as a result of their accidents. What stuck said is true.

Yes, it’s hard, inconvenient, and often means things like Uber (despite their preferences) and family helping out. But the consequences otherwise can be huge. 

This disease is awful, and it changes those who have it, in terrible ways. Many here have long  said they lost the person their loved one was, long ago, although the body is still here.

Rescue mom

Also, many here write notes for the doctor to read before the appointment. Give it to the receptionist or the nurse, say the doctor needs to read it first, then ask him if he did. If he didn’t, ask that he do so, and tell him you’ll wait. You can also ask, as you’re leaving, to see him “just a minute, “to double-check…” whatever, so you can have  a private conversation.

jmlarue

At first, I flatly refused to go anywhere with my DH if he insisted on driving. After months of that, my son went with him one day to the grocery store - just a 4 mile roundtrip. Son was aghast at the non-stop road rage. He actually swerved into a turn lane on a downtown street, floored it, and cut the guy off pulling in front of him. My son said if I didn't take the keys, he would. Long story short, DH has never forgotten or forgiven me for being the bad guy. He no longer remembers our children or grandchildren. Has no memory for what he did or said 5 minutes ago. No longer recognizes our house of 30 years as "home." But, he remembers that I took the keys and got rid of his truck. Some memories never fade. I've been through Hell and back with the attempts to distract, fib, and make excuses. I just don't bloody care anymore. He starts that rant, I say nothing and walk away. Harsh? Yes. I've tried everything to calm the savage beast to no avail. I had to give up trying just to save my own sanity and stay safe from his anger.

I do think women are more adaptable on the issue of losing driving privileges than men are. Just do what you need to do. This dementia thing is tough enough without throwing injury, death, or lawsuits into the mix.

Gig Harbor

I have no idea why doctors are so hesitant to tell a patient they need to stop driving. They seem to prefer that the family needs to be seen as the bad guy for stopping the driving and for making them move. It might be a good thing to look at assisted living/memory care places near you and choose several. As soon as you think the time is coming that your mom can’t live alone you can put her name on the wait list. As Alzheimer’s progresses they become more child like and we would never let a child make crucial decisions so you will have to step up and make them for her. Early on I mentioned my husbands bad memory but told him that I was there to be his memory. I stressed all the other things he could do and how healthy he was in other aspects of his life. It is so strange that older people without dementia are often anxious to move into retirement communities and give others a chance to wait on them but people with dementia fight it.

Rescue mom

Lol, kind of, Gig, you are so right on those closing words. I’ve often said I would love to live in the MC I prefer for DH. Cost, of course, is an issue. And also of course, he actively opposes it, and we’re not quite to the point I can force it. But still.

Lafmore

Driving is such a hard thing since it equals freedom to many of us. The ability to make our own choices about where we go and when. My mom said things very similar to yours and I know how hard it is to hear and to resolve. I enlisted her doctor, since my mom was all about following what the doctor said, to tell her she shouldn't drive any more. The doctor was also the one who enabled me to get her moved to assisted living. My mom really liked her doctor and, after several falls while living alone, one fairly dangerous, her doctor (with my asking) told her she would no longer be her doctor if she continued to live alone and put herself at risk. So, just an idea for later, perhaps. 

My sister actually has more severe Alzheimer's but the transition was easier because I removed her car when I moved her in with me. I took her everywhere, and she just sort of accepted it. We eventually sold her car. She will still bring it up once in a while, but overall, she transitioned pretty well to not driving- as long as I was taking care of her needs.

You are absolutely right to take action to prevent your mom from driving. And the "lies" we tell, are truly for their benefit. Heaven forbid she (or you if you didn't intervene) ever have to live with having hurt someone because she continued to drive. Sometimes when we make it not about her safety, but others, they sometimes hear.

Blessings on your journey caring for your mom.