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

Yes most definitely.....describes my Levy body diagnosed husband perfectly. I know how confused you must feel!
suzanne

My MIL is very much the same. She can, and does follow her various routines. The problem with this kind of dementia is the little things pile up. We’ve all burned the toast or forgotten where we put our car keys. MIL was always nicely made up, clean and well dressed. The house was tidy too. It was easy for us, since we lived far away, to miss what was happening. It wasn’t until we moved back to her area that we began to see it was a carefully done facade. That’s when we discovered she had 21 magazine subscriptions, over $400 in donation requests which she was paying, the condo had serious water damage, and that the brother with POA was liberally helping himself to her funds. The doctor had recognized early dementia, but it wasn’t until I cataloged all the things that had happened that a clear picture emerged. Get all the necessary documentation in order and start looking around for assistance. It may take an “event” like her husband passing, but change is coming and you are right to be concerned.

Yes, one of my clients wife is just like this. Both of these women haven't lost their zest for living life to the fullest. Both have cognitive deficiencies, but they also have strong intuitive skills that are still intact. This is why they are both able to navigate and negotiate via Uber, for example.

The family told us she has Alzheimer's, which is one form of dementia. However, several of us on their private duty care team now recognize her dementia as vascular dementia rather than Alzheimer's. She is very proficient with many things in her life and has some memory loss and confusion through it all. She plans and cooks 3 fresh and beautiful meals for herself and her husband daily. They have me for dinner periodically, so I know her cooking is exquisite. She keeps track of her own calendar of events for herself and does a great job. She also strongly desires her independence. When she goes grocery shopping, she only wants the agency caregiver to drop her off at the grocery and then wait in their car until she comes out. She makes a few mistakes while shopping but nothing that is irreversible or earth-shattering. One day she burned some toast which ruffled someone else in the home that day. Truth be told, so do I - burn toast - on occasion because I do too much multi-tasking as a working woman. This woman also experiences some mood swings that can last for a day or several weeks. She is a lovely delightful person, and I try to accept her exactly as she is. She is wonderful with her husband. I can empathize with her so strongly because over all, she does a great job, yet those of us who would be considered typical and normal, have a hard time accepting how she still manages so well. Her daughter is afraid for her because she suspects doing all of this - including managing her husband with later stage Parkinson's - stresses her out. I think it is good for her. She is still very capable... and when I think about it, she is very courageous, and loving to boot. She has a need to feel useful and enjoys that. Thank goodness, she is still human! It is the people around her who are fearful. The private duty care team and an agency care team are there daily to gently provide guidance and support. Should she one day become unable to perform her daily duties, I'm sure the family will make other arrangements. For now, I am honored to know this woman and observe how she so gracefully navigates her own life and that of her husband.

One thing that might help for now is to schedule a caregiver come in a few days a week for 3-4 hours at a time to help out with chores to let your mom rest and relax while the caregiver is there. They could get to know each other and perhaps the caregiver would become a trusted friend. I would look for a caregiver with minimum 5 years experience who has also worked with dementia patients. The caregiver could also keep an eye on her to see how well she does while she is at home. I would have this conversation with your mom and also ask her what she could use some help with at home. Let her tell you what she needs.

I wonder if this neighbor had gone out to gently chat with your mom at the mailbox how that might have enabled her to find the right mailbox. Society tends to treat people who are different than we are with judgment or fear rather than taking a neighborly approach. Also, some of the tasks mom is having difficulty with are technical. I've noticed one of the first things to go with people who have cognitive difficulties are the computer, the TV remote, and sometimes the complicated cell phones. Perhaps this is God's way of knowingly creating teamwork with the ones who need it the most. I also call this "we" work.

I also dealt with this exact same situation, minus the uber rides. My aunt never got diagnosed until she fell and had to go to the ER. She was diagnosed with dementia and they said it was probably late stage. I had noticed her doing odd things, like calling family members and saying terrible things about me. She would forget how to use her TV controller, how to put in her hearing aid, and even how to do other simple things. I'd hate to say it, but her dementia will get worse, and you'll have to watch her forget who you are, and become paranoid or aggressive towards you. She might even mistake you for your father. My aunt mistook me for a burglar one night and called the police. They arrive at the front door, I explain what's going on, and they nod and say, "You mind if we talk to her?", of course, I shook my head and let them in. I'm not sure if they didn't believe me or that they just wanted to make sure. What kind of burglar waits for the police to arrive, and then greets them at the front door? He might as well say, "Yes I broke into this house, officers. Take me to jail." Anyway, try to be understanding, but if it comes to a certain point, then she'll need to be put into a care facility for her own safety.

Piper, thanks for the update. People with dementia become paranoid and suspicious. It is because their brains are broken and they can't make sense of the world any longer.

Also, if this is a sudden change in her thinking pattern, getting her tested for a UTI wouldn't be a bad idea.

Sometimes losses in dementia progress in "stepwise fashion," rather than gradually. This is especially true with vascular dementia.

For example, one day they can tell time - and the next day they cannot. I've seen this pattern before.

Imho, perhaps she could determine how to set up a ride. More importantly, I would be more concerned with her going out during the Novel Coronavirus.
Someone whose brain is starting to malfunction, may not realize that it would be easier ON HER to mail the gifted sheets back for replacement. Prayers sent.

Time for an assisted living facility home-- start shopping-- go eat lunch there and understand that the plateau she is on will last for less and less. These plateaus go fast-- worse and worse---- do not think it is put-off-able--- you'll be taking chances that will result in a lost Mom somewhere where she could get taken advantage of. We found out the hard way when she gave all her money away to fly-by-night charities--- if she cannot drive-- next move-- take her wallet -- drivers license, bank cards-- everything--- or suffer the consequences-- and you will-- also get that POA established and whether to DNR or.. ( revive or not...best to NOT-- or you end up with a very veg-Mom) Good luck. Start thinking about the future-- the present is already bad-- get ready for worse.

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!

cc

Same with my mother, now age 82. She has vascular dementia, not Alzheimer's yet, and for years she was living alone successfully and hiding her loss of abilities with various work-arounds. She couldn't add and subtract anymore and she couldn't use the bank's phone system anymore to find out how much money she had, so she drove to the bank several times a week to find out her balance. She was always polite, charming, dressed in clean clothes appropriate for the weather, wearing makeup and perfume. No one she saw day-to-day at the bank or grocery store or the gas station would assume she had dementia. She pumped her own gas! Unfortunately she had huge gaps in her abilities and was vulnerable to any type of scam. A saleswoman somehow targeted my mother on her hidden driveway and in 20 minutes, mom had agreed to purchase a new roof for $20,000. The saleswoman showed mom some print photos of damage to an old roof, and mom thought the photos were of her own roof! She had no logic to wonder how this saleswoman could've taken photos of her roof and made prints in 20 minutes! When you mom goes out alone, she's vulnerable to every scammer and thief in every Uber, bus, parking lot, store, office, sidewalk, coffee shop, etc. When something unexpected happens outside of the usual routine, she won't be sharp enough to react. Pick your battles and insist on the things that will prevent the most likely disasters, whatever you decide those are. Most likely disasters such as falling, not knowing the way home, getting mugged or scammed, giving away money to sidewalk beggars with babies, inviting strangers over to the house, calling a phone number on a hand-written index card she found on a bulletin board advertising the services of a "financial manager," signing up for "free" dental insurance. Are there any adult day programs or senior community centers in the area for people her level? Keeping her busy in a supervised situation is safer than letting her roam the malls. Just be careful when she falls in love with a man with dementia!

Option 1: you/DH and mother drive x miles at xx cents per mile to return the sheets = $xx

Option 2: mother takes Uber to said retail outlet, fares there and back = $xx

Option 3: DH collects sheets, assists if need be with repackaging including returns slip, takes them to mail = $xx

She won't say why she won't use the mail, she's just digging her heels in. It could be:

she wants the instant gratification of an immediate replacement, and aren't we all guilty of that sometimes?
the returns slip is putting her off and she's afraid of getting it wrong and never getting the right sheets back
she secretly wants a different colour/subtly different style but doesn't want to admit it to anyone.
she quite fancies a browse round at what else Pottery Barn might have in the same or similar product ranges.

Sigh. Wouldn't it be nice if just for once in each elder's life she could SAY what the problem is and SAY what she really wants?

My father would find different ways to solve a problem than what the normal person might do. I came around to deciding he was actually quite clever.

When my mom gets angry, she's as sharp as a tack.

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??

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.