My mom's dementia is confusing me, am I handling this right?

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.

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 😄

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.

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....

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.

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.

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?

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.

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!

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.

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.

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.

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.