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

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.

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.

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.

One great realization I try to always keep on my mind that that helps me cope as a caregiver and try to relate to my care-receivers as they cognitively and physically decline, is a helpful lesson taught in the Solutions for Caregivers Course that I took.

The physical and cognitive decline we will all endure will be different for each of us...and likely not a smooth one.

In fact, it will probably be a jagged one; with times of "up" when your care receiver will show great lucidity...and then in the next <enter your preferred time range of peace: second, minute, hour, day (wait some of you are still getting days of peace!)> moment "down" they will show you something totally opposite lucidity.

If I had a nickel for every time I heard something to the effect of: "Oh my care-receiver was so "with-it" today, maybe they are getting better!"

Take care of yourself and enjoy the peace when they are lucid; take care of them with all the respect they deserve when they are not.

Remember your tools when things get difficult:
Always step in when safety is a concern, they might not know any better.
Try to resist engaging in reason with someone who no longer has the capability of reason due to cognitive decline.
Distract & Redirect is your best friend. =)

Stay Caregiver Strong!

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.

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.

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!

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.

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.

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.