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My mom lost her driver's license a couple months ago, so she's been needing rides to get places. DH and I have taken her, but she is also Ubering on her own. This should be a good thing, right? So why am I worried about it, and confused that she can even pull it off so well?


There are times my mom can't remember how to work her TV or her remote. Last week a guy in our building called my DH because he saw my mom by the mailbox looking confused and trying all the boxes. He apparently thought this warranted a phone call, we barely know the guy. I have to help my mom with numerous things. I don't doubt that the dementia diagnosis she got in early 2019 after her neuro-psych eval was correct.


So how is she doing Uber so well?? She is arranging rides and going places and not even telling me until after the fact. These places aren't far, but the fact that she is correctly using the app is really surprising to me.


My mom has always been one to get in her car and go. Some of you may recall that losing her license was like the end of the world to her, so I get that she likes to get out. She also doesn't like having to work around my schedule or DH, when she wants to go, she wants to go now.


Has anyone else experienced something like this where the person has significant deficits in some areas, but can do other things?

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Piper, your mom has Vascular Dementia, right?

My mother passed MiniMental evals in the nursing home until about 6 months before her death, but couldn't tell you the correct order to put clothes on. Looking at a CAT scan of her brain, you could see large sections where there was no longer any functioning, but lots of areas that were intact.

There is clearly some intact executive functiong with regard to travel. She got to PA to get to the other doctor, she arranged a lawyer and is okay with Uber.

I wouldnt worry as long as she has ID on her with an emergency contact.
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ExhaustedPiper Dec 2020
Yes, vascular dementia.

She did need a lot of help when she was making her FL/PA trips, and I highly suspect she had help with the lawyer too, she just wasn't sharing that info.

But now that you are explaining how your mom presented, it makes more sense. I remember reading through my mom's reports (I never did see an actual scan) but specific parts of the brain were definitely more affected. She also has chronic small vessel disease.

I'll stop worrying about it and just be glad she is using Uber independent of me.

Well, my question was different for this forum--- My mom is able to use her Uber app, should I be worried? LOL Geez, I swear I need to chill out!

Thank you Barb. You are always a calming voice of reason and I appreciate it.
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Piper this is such an interesting question. My first concern for Mom is the safety thing. Is she masking up and safe to go "out in the world" in this manner.
But that is not the question, or not YOUR question. I think yes is the answer to seeing specific areas, and especially in the early stages. My bro never lived to pass to later stages in the Lewy's Dementia he was having. When he had hallucinations, or those funny sort of freezed out moments he could describe them, and what brought them on, and that he understood they weren't real. He knew he was seeing the world "differently" and said he was relieved to know WHY (Lewy's) though he wished he didn't know where it would eventually lead were he unlucky to live so long.
YET there were two specific areas he couldn't/wouldn't handle or understand that were very worrisome. One was a paranoia around his room, his stuff and his privacy; the other a tendency to hide things (likely due to the prior thing) thing, and a tendency to then accuse others of taking them. Only these two specific things. Other motor symptoms, eye sight symptoms, swallow symptoms he would experience and then describe.
Fascinating on one level all this. Scary on another.
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ExhaustedPiper Dec 2020
Thanks for sharing Alva. I agree- fascinating and scary at the same time.

To answer your question- yes, she does wear a mask, and so does the Uber driver. The few places she is going (grocery store, nail salon, doctor appointments) are all mask compliant. I do remind her to be careful all the time.
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Dear "ExhaustedPiper,"

No, it's not unusual for a person to have significant deficits in some areas, but can do other things. Also, just like you said at times they can seem just fine. My mom was officially diagnosed in 2014 but, I suspect (and most likely, she had it several years before that). I've also been to a support group years ago where they had both the caregiver and the one with dementia. I met one of the couples and I had no idea the husband had dementia - I thought they were both caregivers for someone else! My mom's struggle is mainly with time issues such as what she had for breakfast ten minutes ago and comprehending instructions or being able to make a choice such as toast or a biscuit. Otherwise, she does pretty well for almost 96.

If it were me, I would be concerned about my mom taking Uber by herself especially with COVID in the picture. My mom was just like your mom. She has always loved to drive and would think nothing of getting in her car and going all across town. And just like your mom, when we took her car away, it was like the end of her world because in essence it was. It was pretty much the last piece of independence (other than still living at home) that she had. She was angry for several years! I know she told her siblings so of course I looked like the bad guy. So I wonder if she doesn't tip the person and is it possible the driver helps her on the app at some point. My mom could be impatient too so if she wanted to do something, she wanted the freedom to do it.

So I think some of your worry is stemming from how unpredictable the disease is. It's not like a physical ailment where someone has a broken leg, you get the proper things lined up i.e. crutches, wheelchair or whatever is needed and you do x,y,z for a certain length of time and the ducks are all in a row. This is totally out of control, it's like being on a rollercoaster and all I can say is be prepared to "hang on." Also, I don't know what type of dementia she has, what stage or how long she's had it.
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ExhaustedPiper Dec 2020
Thanks for your response. I do talk to my mom about covid quite a bit. Uber also has a mask policy and she sits in the back opposite of the driver. I don't think I could stop my mom from using Uber even if I wanted to, she would just go. That is what she's been doing! She has never taken an Uber because I turned her down for a ride. It's the freedom thing.

Like yesterday she had plans with my DH to go to the grocery store at 11AM. When he went to get her she said she wasn't ready and for him to leave. She really didn't need anything so no biggy. I saw her later and she had Ubered to the grocery store, and then told me how nice the guy was and he brought all her bags right to her door. Apparently he shopped while she shopped and one of his things ended up in one of her bags- BBQ chicken strips. I said are you sure you didn't get them and she said - No, I hate those things. Meanwhile I'm picturing Uber guy shopping with my mom!

And you are right, the unpredictability does give me anxiety. I need to get a grip on that, and just be glad she can still do some things for herself.

One more thing- I hear you on the "bad guy" on the driving thing. I'm the bad guy in my family too since my siblings were too chickenshit to tell my mom she shouldn't be driving ANYWAY, even if she could pull off a license scam. Hey that's okay. I know I did the right thing on that front and I'm glad it's over.
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My mom can't keep on topic in a conversation for more than 15 minutes. But she can, and does, balance her checkbook to the penny every single month. And she does the word puzzles in the paper with ease.

If you asked her what the names of all the grands were, she'd be able to maybe name half? She also gets messed around with the news and what's going on in the world.

I WISH she could have adapted to the use of an UBER back when she was just walking with a cane. I think she would have loved that measure of independence.
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ExhaustedPiper Dec 2020
Thanks Midkid. It's good to know a mixed bag of behaviors/confusion is more common than I realized.

This is probably why some people can fool doctors and visiting relatives for so long. My mom's BFF knew she had dementia long before I did, and that BFF was the driving force to get my mom moved. She knew what was coming. (BTW I don't blame her at all) But to others-- me included, nobody suspected dementia.
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Piper,

I completely understand your confusion!!

I was shocked when my Aunt passed her mini mental status evaluation with her PCP. I knew better!! This was the same woman who tried to answer the TV remote when the phone rang and couldn't get the phone to turn up the volume on the TV. Lol. Of course the Geriatrician bumped her diagnosis up to Alzheimer's.

I know you understand that there is no rhyme or reason for the things our LOs with dementia do, but the worry and frustration is agonizing!!

Do what you can so that you don't make yourself crazy with worrying!!

Take care of yourself too!
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ExhaustedPiper Dec 2020
Thanks Jodi, it really is a mixed bag!

Yes, the worry and frustration is one of the hardest things. My mom is like the teenager I never wanted. Rebel to a fault. She STILL thinks in a year she will be able to get her license back, and Uber is just "temporary". I refuse to enable this thinking because I know how reckless her behavior then becomes, but my siblings are going along with it just to appease her and get her off the phone. This has caused me more problems and I have anger toward my siblings, but that's a rant for a different day. Plus it's at least a year away, so who knows where we will be by then.

Thank you, and you also take care!
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Piper, I'm curious to know why you think it is important to insist that your mother acknowledge that the loss of her license is permanent.

I would be going along with her dementia fueled fantasy.

No one is givng her the keys. What harm does it do? I am genuinely curious. It is what I would call a therapeutic fib.
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ExhaustedPiper Dec 2020
I understand why you are asking. I wish with her it was as simple as just going along with a demented fantasy. With her though, she acts on it, on her own, and does so recklessly. For weeks she was Ubering all over trying to get the paperwork she thought she needed, forgetting stuff, having to Uber back again, because she KNEW she was going to be able to get it back, then calling me for some kind of validation. And I couldn't do it.

For example- when she took a plane to her old town and went to her old neurologist to get a letter for the DMV, she told me that her old doctor told her there was "nothing wrong with her" and that "I am FINE to drive" blah, blah. Now I don't know what he said to her, and my mom lies so it's hard to tell, but for me, I could not bring myself to agree with her. I didn't start to argue that NO you have dementia, I just tried to change the subject and she got infuriated!

It became a battle. Either I agree that she is fine to drive, or I get the rage. And I got plenty of rage. There were no lectures from me, or requests for acknowledgment, I just wanted to stay out of it. I told her two things, once- 1- that Florida would not give her a license and all these efforts were for nothing, and 2- that I did not think she was safe to drive anymore, anyway.

Her rage towards me ended the day the DMV told her she could not get a FL license due to her PA suspension, no matter what test she passed. She never told me they rejected her. She said "I decided to wait".... and then framed it to my siblings that she somehow was forced to cave to MY demands. They both knew that wasn't true, but went along with it anyway.

It's dysfunctional Barb. No doubt.
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EP, my heart goes out to you.

Have you read up on Grey Rock? She rages to get a reaction, methinks. If she rages and you don't react (you say "we'll see" or "that might be true") she either stops (not likely) or she ups the rage. And you walk away or hang up.

Your reactions are fuel for her narcissistic needs. If you don't feed the needs, they look for another outlet.

So she Ubers around. Is there harm to that? (Yes, COVID exposure and possible falls, etc.) But that's on HER. No one has said she is incompetent, so you can't think of her as an underage teenage bully.

She IS bullying you. Frame it like that. Does that make you react any differently?
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From a site called CBT Psychology:

Make Some Room: When she doesn’t get her way and takes it out on you, don’t be passive! Let her know this way of dealing with her anger is not constructive. Strategies to diffuse the situation can be challenging to come up with on your own on the spot so it is best to think in advance.
Be Compassionate: Even if it seems like she doesn’t deserve it, recognize that she likely needs compassion, empathy, and pity from you. She may have a hard way of showing it, but she does care about you.
Accept and Let Go: Try to accept that her narcissism is who she is, and nothing you do can change that. It is not your fault. So, remember that her words and actions come from her problematic personality and are probably not true.
Have Some Confidence: In recognizing her narcissism, it is also important to recognize your own self-worth, even when she downplays your strengths. Engaging in hobbies that enhance your skills and sense of accomplishment will help to boost your confidence.
Lean on Others: While nothing can replace the validation a child receives from their mother, there may be other supportive figures you can lean on like friends, teachers, co-workers, or other family members that you are close to.
If you ever feel your safety or mental health is at risk, it may be necessary to keep your distance altogether.
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ExhaustedPiper Dec 2020
Thanks Barb.

I think I am doing Grey Rock now, as much as I can, or at least some emotional blunting. All of this is still a miserable journey, but I've gotten better at protecting myself.

I don't take things personal from a rational point of view. I know that she is damaged. It's only when I get triggered that my emotions get out of control, but with that too, I'm learning to walk away from it.

Thank you again 💜
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Your mother is stubborn & quite used to getting her way. She's found a work-around to losing her license, that's all. Where there's a will, there's a way, dementia or no dementia.

That said, my mother HATES hates H A T E S when I try to control her in any way shape or form. She will vehemently argue the slightest thing with me, for spite, and to push my buttons, just so she can get 'her way'. Let's use Depends as a for instance. I was ordering them for her on Amazon, automatic delivery, once a month, direct to her ALF & delivered to her room. 100 weren't enough, OMG, I need more. I upped the number to 150. That was OMG TOO MANY I NOW HAVE A MILLION DEPENDS IN MY ROOM. So I cancelled the automatic delivery and told her, 'let me know when you need Depends & I will order them THAT DAY and you'll have them in your room 2 days later." That worked ONE time in the past 5 months. Once. I asked her, do you need Depends, after seeing she hadn't had an order for 6 weeks. "Oh no, I have a whole CASE in the closet." Ok mom, no problem. I figured The Case was empty. It was. The very next day, the phone rang. "I'm out of Depends." Fine. I ordered her some from Amazon. She calls hollering OMG THERE'S TOO MANY DEPENDS. And so it goes, on & on with endless BS.

2 weeks ago, we went to do a window visit. She hadn't 'needed' Depends in 2 MONTHS. She pulls up her shirt and pulls down her pants a bit in her wheelchair screaming LOOK WHAT I'M WEARING. Gray Men's Depends. "Oh I love them, they're wonderful, couldn't be better" she says, she does NOT need another order of Depends from Amazon, she still has 'the white ones' (meaning she must've needed the MC to provide her with briefs) and these lovely gray Men's Depends she got from the staff. I was ranting & raving the whole car ride home, just ask DH. When I got to my desk, I signed her back up for 100 Depends to be sent to her ALF automatically every month.

The subject is now closed. I let her know what I'd done; she screamed OMG I HOPE YOU DIDN"T ORDER TOO MANY? I told her The Subject Is Now Closed Mom.

If your mother wants to ride Uber, fine. The police will take her home if/when she gets lost.

If your mother wants to try every mailbox in the panel to figure out which one belongs to her, fine. The key will only fit ONE.

Tell your mother to call YOU if/when she wants a ride to the store, otherwise, you'll assume she's stocked for groceries. If you are available, you will take her. Otherwise, she can call Uber for a ride.

Schedules are in place for a reason, regardless of whether she feels like abiding by them or not. When she doesn't, Uber is available. So is take out and delivery. Oh, and Amazon automatic shipments.

My mother has significant deficits in lots of areas, and is perfectly lucid in other areas WHEN SHE WANTS TO BE. Those that tell you dementia is totally all encompassing really don't understand dementia, or, their loved one is at the end stage of dementia which is totally different than the early, moderate or later stage moderate phase of dementia, where they certainly CAN do LOTS more than we THINK they can. Especially when they're very stubborn and manipulative to BEGIN with. That doesn't change with dementia.......it just gets worse. They get MORE conniving than they used to be before the dementia set in, and THAT is the unnerving thing here. THAT is what keeps you unbalanced more NOW than you were BEFORE.

Leave her alone to suffer her own consequences entirely. Your job is to be there to pick up the pieces of the messes she makes. And she won't always make them, either. But when she does, and she WILL, you will be there to help her out.

She wants to maintain her independence as long as possible. Let her.
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pBubblegum Dec 2020
I am having a similar issue with my dad but it’s not Depends it’s Socks! Where are my socks? Dad’s friends call me demanding to know why my dads socks are, why doesn’t he have any? On and On. I told him if you actually went through your clothes basket and put your clothing away you’d see that you have about 25 pairs of socks! Now it’s “they don’t fit! Theses are the wrong kind! No dad, I bought exactly what you told both mom and I to buy or bring from the house!”
Agree the manipulation and conniving is out of control.
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Heck, I have been present the whole way with my mother including with a hand-picked outstanding and well regarded local neurologist who interviewed her . His experienced diagnosis was dementia/mixed type. We never had any further discussion; dad is slow to grasp the concept but clearly gets she has an issue. I heard it but her functioning level etc so often on observing her I have trouble believing the dx. Really? It seems at different times, spiteful, informed, deliberate, aware. In conclusion, hateful. I remain grateful she can do what she does....she can walk, do the steps, dress herself and go to the bathroom...yet her hygiene is dreadful; she has not showered for years and she doesn't care. On one occasion she pooped in her pants and was leaving a trail. She refused to listen to her beloved husband or me and the thought of him getting in bed with that ongoing stench in a matter of hours was one of the most challenging moments yet with her. I called the MD who was of no help at all. I was beginning to feel like my only option was to call 911, and yet what could I expect THEM to do? Ultimately I gave it up...got my scissors and I literally cut the nightgown she was wearing off of her and threw a robe on her. Yet in a calm moment, none of it seems to justify putting her in an institution. The refrigerator is another hot button. We supposedly share the space. She thinks EVERYthing is HERS. So she is I have reason to suspect drinking the fruit punch from the bottle (contaminating the whole thing), god only knows what she is doing with the chocolate syrup, and I suspect she MAY be drinking salad dressing from the bottle. SHe also likes to mix some into milk or water....IF I put a note on anything that says DO NOT TOUCH/NOT YOURS. SHe will rip it off and make believe it never existed and is clueless. She takes mail that is not hers. SHe opens it, even rips it in pieces....Yet she will dress herself down to putting on costume jewelry....it's amazing....
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pBubblegum Dec 2020
Oof! That’s a lot! Can you have a home health person come in and help you help her with the bathing? Would your mother be opposed to someone like that come in to help?
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My dad seems to wax and wane a lot. He was diagnosed in August with Dementia possibly Lewy Body. Some days he sounds so good I swear the doctors misdiagnosed him. The other days he can’t remember where he’s at. I often feel like my dads deficits shift or change, then change back. My dad refused to get on board with the changing technology times with smart phones and what not. He would be completely clueless with smartphones or apps, and Ubering places.

I can understand your worry with your mom and her Uber outings, and using the app. Is she paying for her rides correctly and making it to and from her destinations? Do you have a GPS tracker on her phone so you can check on her?

My dad told me all the tv’s in the memory care facility were broke last week so he couldn’t watch the Packers game. Come to find out his tv works just fine, he forgot how to use it.
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ExhaustedPiper Dec 2020
Was your dad assessed before he went to MC, and it was deemed he needed MC as opposed to Assisted Living? Was he wondering? Just curious about the criteria.
That's a shame he missed the game. Can you tape instructions to the remote? I wrote instructions for my mom's on a piece of cardboard she keeps by the TV. She too will forget how to use the remote, but she can use her iPhone and that Uber app!

Yes, she does it correctly.... so far. As a career, my mom worked as a systems analyst so in the past she has had a firm understanding of technology, so that must be helping.

I used to track her phone with the find my friends app on her phone, synched up to mine. Then one day she got in one of her moods so she blocked my access. I didn't even mention it. I didn't want to get into a power play. Now that she is not driving I know where she is most of the time (in her condo or mine) but I might try to get that find my friends feature back on her phone.

She does have me listed as an emergency contact in her phone. So I am notified immediately if she pushes the emergency button, and she knows how to use it. She figured that out when she accidently pushed it one time and I got an alert with her exact location and so did the police. She was safe and in her condo, but the police both called and came to the door.
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I feel for you. I’m in a similar situation with my father who was diagnosed with vascular dementia. I’m still upset with my sister for showing our father how to use the Uber app in case he needs it because I do not trust him out there on his own. It gets very hot out here in the desert and I worry if he gets lost nobody will find him until it’s too late (it happened this past summer with someone and a silver alert). The problem is my sister lives out of town and doesn’t see him everyday so I think she still doubts he has dementia. Some days he will forget how to use his tv remote or even his phone. Other days he’s perfectly fine. I have to admit I thought I was losing my mind. It’s been a roller coaster and difficult to accept the fact that sometimes he can be perfectly lucid other times he is so very confused. One day he can’t do simple math other days he’s calculating math out loud and he’s quicker to find the answer than I am haha. It really is confusing but I’m trying to accept this is how his dementia works. I do think it’s more difficult to take the keys away or convince him to let me take over his budget being that some days he is actually able to do it, but I am trying to have license taken away because what if one day he is confused and hits the gas instead of the brake and kills someone. The Dr. Is asking motor vehicle to give him a thorough driving exam, so I’m happy with that. I just hope they don’t catch him having a great day the day he goes in to take his test. If so I will have to write another letter to motor vehicle...oh the stresses of being caretaker 😄
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JuliaH Dec 2020
That's the scariest thought about the elderly driving. Mom hasn't driven for over a year now, her Dr. put it right out there. "At your age, you would probably not survive an accident!" Maybe that's what your father needs to hear? I'm going to add, it really sucks the life out of them, but at least they're still alive.
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Yep, he got assessed by a bunch of doctors and psychologist. My mom left my dad in July. My dad went into the hospital in August because our neighbors found him naked laying on the garage floor unable to get up after falling. He was taken by ambulance to the local hospital. They thought it was just congestive heart failure. I demanded a neuro consult and cognitive testing. He was assessed and tested and tested some more. It took 5 physicians, 2 Psychologists and 2 judges all deemed him incapacitated. The neurologist who made the diagnosis suggested my mom and I lawyer up and go to court to get guardianship. So that’s what we did. My dad refused to allow us to be POA. The only reason the court stuff took so long is because my dad contested needing a guardian. No such luck.
The judge made the ruling of a memory care or like facility and made me guardian, and my mom the guardian of estate.
Thanks for the idea with the tv.
I’m going to write the instructions about the tv on some cardboard! Great idea.
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I don't have those good moments with my mother. The t.v. remote and the phone almost identical and finding a DVD in the VHS slot? The only reason I don't worry too much is she has a life alert button. There's help at hand where ever she goes.
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JoAnne80 Dec 2020
Sounds as if you Mom is starting dementia. Some things stick forever, and other things are forgotten. But, life alert button is useless if she suddenly doesn't remember she has it. I wear one myself and do not have dementia. But, if some day I forget it's on my neck or on the night stand, it won't do me a bit of good. My day is coming, but I don't know when, but I think of this situation a lot. The suddenness of forgetting can hit at any time, and last for only a second. I've had one congnitive test and passed. But there are days I look at the calendar wrong, I forget what button on the keyboard to select for a function, or where I put something. I can stand still or go back where I came from and stand there until I remember. I often go back to the room I remembered where I was when I got the thought, then I will remember right away. I myself am scheduled for appt with a neurologist specifically because of these little moments of forgetfulness.
Having a life alert pendant or wrist doesn't mean she is safe if she forgets she has it on.
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We set up a service called GoGoGrandparent. For a small fee, they act as an intermediary to set up rides. There is also a function where you can be made aware of when and where your person is picked up, dropped off, ect.

Your mom can call them and press 6 to speak to a "Grandchild" who arranges the ride for her with either Uber or Lyft.

There were other options (Press one to be picked up at home. Press some other number to be picked up where you were dropped off) but that just confused my mother. Press 6. Speak to a person.

She can still get herself around independently and if any of us are worried, we can check the service and see where she went.

I thought the initial set up call provided too much information for my mom so I would suggest that you make her first ride reservation for her- and after that, as I said, have her speak to a person.
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Invisible Dec 2020
I was thinking the same thing.

https://www.seniorsmatter.com/ridesharing-transportation-for-seniors/2491978
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I am concerned that your mom needs somebody with her wherever and whenever she "goes". She easily gets lost and she obviously is an easy target for unsavory types. I am concerned that she may be racking up quite a bill with all the comings and goings and that she can not understand how these trips may be draining her finances. Might I suggest that it might be time for her to have a sitter or caregiver when you and DH are not home. You can arrange for a person with a car that can take her places as well as keep her safe.
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Jannner Dec 2020
I know Lyft has a GoGoGranny service. Their drivers are only their top drivers and have to have impeccable ratings . My husband used to drive for them and often could pick up the same person he dropped off. Might depend on how busy your area is / how many drivers but he had many repeat seniors . At least with him he knew they got there and back safely .
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My mom can still do her checkbook, write out checks, know when everything is due, etc. But remember to take her meds, that she's been taking for 20 years, it's hit or miss. Repeating? OMG, the repeating. She says she's "just making sure" when she asks the same question 20 times in 5 minutes, but I really think that she's forgotten that she's asked.
I've been told that my Mom's short term memory is extremely bad (unless she's going through her sundowning, then it's all bad). No new information can get in, but old information (like the checkbook) is in her long term memory. That doesn't fit the scenario that your Mom is going through since Uber is a "new" memory and she seems to be doing good with that. Dementia certainly is a mystery.
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When my fiercely independent 90 year old Granny who lived alone in a 5th floor apt, turned on the water to take a bath and then left the apt, the water ran down all the floors to the superintendent's apt. She would call my mom (DIL), ask how we children were and chat. 10 or 15 minutes later she would call again and not realize she had just made the call.
She described this as a fog that would roll in and she wasn't sure about anything. Then the fog would roll out and she would be just as clear as always.
Unfortunately, the fog started to be a more permanent issue. My Dad and uncle were unable to bring her to either of our homes and she was nursing home placed. She left there one day to go do her usual errands. Police brought her back. She lived to 99 and never stopped being the feisty woman I adored.
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JoAnne80 Dec 2020
I'm puzzled. If she was in a nursing home, how did she get out? All the doors are usually locked, so they can only go out doors that lead to a garden or sitting or pool if there was one. I'm shocked she was able to just walk out.
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Absolutely. This is often a hallmark of dementia. In my personal experience, it's things like working the remote, turning on the oven, or repeatedly re-reading a simple piece of mail that confound and evade people with the affliction. Important and focused tasks such as going to a doctor's appointment in an uber are actually often free of issues because the afflicted is dedicated and engaged.
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I'm sorry to hear this. It must be maddening to think she might get lost, at the other end and you won't know where she is. Her mind can change at the snap of a finger, and might not be able to find her way home again, and believe me it happens.
When my husband kept trying to put the house key in the ignition of our car, I decided it was time. I locked the keys in the safe, as he would go through my purse for them. I was in the process of trying to clear out the house so we could move closer to my son and facilities as I knew he was near. I was not always in the same room when he would get the idea to "get the keys".

It sounds like your Mom is starting to be a danger to herself. She could be hurt on the other end of her trip, could be accosted, or have the Uber take her somewhere she shouldn't be and not find her back to you. Family can't keep their folks "home" because they or you don't want them to go to a facility. We, as family, have to think of safety of our loved ones, and recognize , because they can't, that "time has come".

In your case, I would initiate first, take her phone away from her so she can't call Uber. And recognize she must be in a safer place. I wish you all the best.
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Karenhage Dec 2020
I am so sorry for your situation. My DH also Alzheimer's. He is in the late middle stage and we are experiencing much the same issues as you. You may want to call your local police department and inquire if they have a "find me" program for families dealing with Alzheimer's. Our police program uses a monitor (wrist or ankle) with GPS and a code and cannot be removed by the ALZ patient. If my husband gets lost all I have to do is call, give them the code and they can quickly locate his location. They offer this for free for Alzheimer's patients family. It is highly recommended program if you live in a rural area and cell phone tracking systems may not work. Best wishes as you navigate this difficult road.
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With my mother it depended on, according to her neurologist, which parts of her brain were damaged. Literally up to her last breath she continued to show narcissistic tendencies , ie manipulation, gaslighting etc, which you’d assume would take some mental acuity, but had no idea where she was, was hallucinating etc. She had confirmed vascular dementia and suspected Alzheimer’s.
So I think it’s probably similar with most dementia victims.
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Dear Exhausted Piper,
I write from the perspective of the patient. I was diagnosed with Early Onset ALZ more than 4.5 yrs ago one month before my 57th birthday. I have some comments on this subject to share again on Agingcare. When I received my diagnosis, I was told I scored in the lowest 1% of men my age on my Neuropsych Exam. I immediately brought up the subject of driving with my Neuro doctor. My Neuro Dr, has been seeing me for 15 yrs since I was first diagnosed with Muscular Dystrophy. Based on my Neuro situation and all of the other testing, she told me I was the first patient that ever brought the driving question up on their own. We agreed at each appointment she'd test me and we agreed if she thought I needed to stop driving she'd tell me. I gave up my Driving Privileges back in early March, I called my Neuro and told her I was giving up my license, she said, I was the first patient to ever surrender their license without being told to stop driving. I was uncomfortable driving, and not once, have I said anything about wanting to drive again. I know me and everyone else is safer.
Over the last years since my diagnosis, I've gone from cooking meals with my DW to not cooking anything when I am home alone, I know I left the stove on and walked away 4-5x and decided I'd make a cold cut sandwich on the occasion I'm hungry. I know I'm declining, my family is pretty good about letting me do the things I can still do, ie Laundry, vacuuming, taking the trash out, and I can still cut the grass. I've given up the bill paying responsibilities because it confuses me. I know I get angry when I am buying a service and if, I don't get proper service and I start yelling when the person I am working with won't take action to correct the error, which I know embarrasses my family. I worked in the travel industry and still had clients that I'd served for over 35 years. I took the time to note their preferences and I would suggest suppliers that I knew would be providing the type of services they enjoyed. When I made a mistake I told them I'd look into fixing the problem and get back to them with an answer. Should I be having trouble solving the problems, I called them and kept in touch with progress reports. During the last 10 yrs of my career, employers dinged me for the errors I made, and it came out of my income. I'm glad those days are gone, I never told my customers that I had to pay for my mistakes, they didn't need to know and I appreciated their confidence in me.
I saw a book mentioned on Agingcare a couple of weeks ago, the 36 Hour Day which I borrowed from the library. There is a plethora of information that I think would be valuable to the patients and their families about the ALZ journey for both Caregivers, and Patients. I told my DW a couple of days ago, I thought we should buy a copy and keep it in the house so our family could read it at their pace both our 20 something sons, and our Teenage daughter. Their is a lot of good advice on dementias and advice on how to handle the day to day challenges we all endure on this journey. We ordered a copy as a family Christmas gift that will always be available to read.
I have been able to determine by what I've read, I know I am in the middle stages on this journey of the past 10 years. I complained about my memory to my doctors for 5 years when I was fired from my last job for failure to meet my goals. The doctors then got onboard and we went through the testing only to find, yes I was right, I had a dementia, ALZ. Start to finish, it was three months before I got the test results, of the MRI and the Neuropsych exam. I encourage those reading this, if a family member thinks they are having memory problems, advocate for action with your families physicians on their behalf. Maybe it isn't a dementia, but like me it was. Yes, some people are uncomfortable with this topic, you can decide when it is time to let them know about your family member.
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We are constantly amazed at the things Mom can suddenly learn or do and the things she can’t, if I didn’t know any better I would swear it was selective memory just like the selective hearing we know isn’t really selective ( we’ve tested both unscientifically ). A lot of the time there is no teaching her new things, like how to use an app and we usually have to walk her through using the remote, though not always...it is an ever changing thing. Now my Mom had a stroke that caused permanent aphasia as well so that plays a part but the best thing for her is repetitiveness so as long as she’s using the phone for instance every day she remembers how, maybe this is part of what’s happening with your mom she’s using Uber often enough and driven to do so that it’s rote memory of sorts. I will caution you that there are bound to be days when she can’t and that’s going to be really hard on her both frustrating and sad maybe even scary and it not unlikely that will come and go, some days no problem others she simply can’t figure it out and in some ways that makes it harder.

I forget if it’s Uber or Lyft, maybe both, that allows you to connect to her app so you will get updates every time she requests a trip and even allows you to watch where she and her car are the entire time. This would enable you to know where she is and probably see when she might be in trouble or at least track her if need be. My mom wasn’t able to do it on her own and really liked that I could order the car and track the trip for her, I could tell her exactly when the car was pulling in the driveway too and she loved that. Your mom may not like that idea, you will need to feel that out but she doesn’t have to to know just how much you can keep track of her either. I’m not suggesting invading her privacy in general but there is an exception I think for her safety and your piece of mind, I just try to be sensitive about when and how I exercise that need/ability, I look at it as what I need to do to enable her to be independent.
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I'm impressed that she is able to use the Uber app, but keep in mind that her motivation to conquer it is huge - it's fundamental to her independence - and, once the Uber arrives, there's a kindly human to help your mom sort out confusion. If she lives in an area where there are not thousands of drivers, she may be getting repeat rides with the same person who will come to understand her needs.

Your mom sounds like my dad. He LOVED to just drive. He would drive to a store, rather than pick up a phone, just to get a question answered. Giving up driving was devastating. He didn't learn how to use a smartphone before his dementia interfered, so he was never able to master one, but Uber would have been a godsend to him. That said, he is now living in LTC, very confused, but is still able to track professional sports standings, etc, as well as he ever has. It can only be about motivation and will.

I've always been impressed by how well people have been able to 'mask' their dementia to their children, so they can still be who their children want them to be.
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One of my mom’s first signs was difficulty with the tv remote, DVD player, etc. Even after her diagnosis, her disease progressed so slowly in stage 4 that she lived independently another seven years.

Make sure you have a means of tracking her in real time. My mom always remembered her phone and purse, so we tracked her phone.

Also, consider placing audio/visual cameras in her home so you can check on her. My mom wouldn’t allow me to do that, but she did agree to an Echo Show that we placed in her living room. We set it up to allow us to “drop in” and I promised her to never do that unless she wasn’t responding.

Once my mom fully reached stage 5, it became apparent she could no longer live alone. We tried to move her in with us, but she hated not being in her own home and became hostile. Her boyfriend tried moving in with her but he left her alone for hours at a time. At this point she was entering stage 6. Although she initially hated me for moving her, she is now happily residing in a lovely assisted living facility.
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My gramma could recite her prayers like know other she was 98 and that is one thing she never forgot how to do. I’d give her rosary and it was also a calming thing for her, she was off in her own little world with the Lord for about 30 minutes. But she couldn’t ever remember her caregivers name and others close to her. I think there’s always that one thing that keeps them going if they are still physically able to do it. In your moms case the only thing I’m concerned about is if she’s getting out of the car or does she just go for joy rides? Maybe you can look at her past rides and see if it is the same person perhaps reach out to them just to know that she is safe. I’d be concerned of your mom getting lost if she gets out, or worse getting in the wrong car. Perhaps you can hire a caregiver for her and let her know you can go out and drive around but the agreement is you have to go at this time everyday and she doesn’t have to use the app anymore. And that will be the time you hire the caregiver for a couple hours or whatever works best for your situation. If she is getting out of the car this would be a way more safer option as she would have the caregiver with her. Just please don’t think that your mom is able to do more than you think she can. Because if you let up that could be the day something unfortunate could happen. They become fall risks as well. Unfortunately and eventually she will need 24 hour care as her illness is progressive.
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I’d also like to add for her to start seeing a Geriatric Dr and a Geriatric Psychologist both are best for treatment/medication and helping you understand the illness much better and treat her much better than her general practice. The GP and regular psych doctors are very limited with medication which isn’t helpful and can be very frustrating for you, especially when it comes to her not sleeping at night.
I lost my gramma this past October so I hope by sharing my experiences will help others cope and so their loved ones with the illness can live the best life they can in memeory of my Gramma Rosa ❤️
God Bless and Good Luck
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Problem will be if she Ubers somewhere and then forgets how to contact Uber to get home or forgets where is home. Might want to make sure she has a couple emergency phone numbers in her purse. Step-by step instructions for Uber might prove helpful as well.
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My mother is driving me insane!!

My sister sent her sheets for Christmas. Nice sheets from Pottery Barn, but she got the wrong size. My mom has a queen bed and my sister got king sheets.

My mom is wanting to return them in person to the Pottery Barn closest to here which is about a 45 minute drive one way. She doesn't want to pay Uber for that drive, she wants me or DH to take her.

We BOTH told her to MAIL the sheets back, that we would help, but she will not listen AT ALL. She started huffing at me "Well I guess I'll just have to Uber then!".... then calls DH's phone asking him, AGAIN. So AGAIN he offered to help her return the sheets by mail, and she just kept digging her heels in like a spoiled child. He told her to call my sister and have her work it out, and she said "No, I don't want to do that". Of course you don't.

Why is this so hard? Should I cave and take her myself or stand firm on this??
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Invisible Dec 2020
You need to remember your mother's world is smaller than yours, so little things take on a greater significance. Also, if she is experiencing memory loss, this activity will seem more urgent to her because she is afraid she might forget about it. I would just take the sheets and return them. If you want to give your mother an outing, take her with you. God bless your mom for trying to take care of things.
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When my mom gets angry, she's as sharp as a tack.
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