It's been 6 years since we started seeing memory issues but it’s getting to the point that she repeats herself constantly. My sister and I live out of town. She needs a caregiver, to allow us to go to the Dr with her, and to stop driving but she gets so angry every time we bring it up. Any tips to help us?
Our system (which I generally agree with) is that until there is significant decline in executive function or orientation a person is still competent.
I have stated in other posts I wish our legal system had a in-between state for MCI where people remain competent but must designate some other competent adult to "co-sign" major decisions (like rewriting a will, re-deeding or selling a house, giving away large sums of money and yes, renewing a driver's license) confirming these decisions/changes are in the principal's best interest. I do not think the co-signer should be a child or any other family with a potential conflict of interest.
I wish the many commentators who post about HIPPA problems could have experienced my estranged brother verbally and emotionally badgering my mother about her short term memory problems were really ALZ and how she needed to "mind" him because her brain was garbage and her thoughts and opinions about her life and running her house didn't matter. This was 8 years before she scored a 27 of 30 on the mini eval! Or course estranged brother also told our mother when she had no cognitive problems of any type (and wouldn't for another 16 years) she had dementia; our father had dementia and she was about the same age so she was bound to have it too! If you think every child should be able to invade their parents' privacy, please consider how you would feel having your worst enemy go through your medical records. Yes, HIPPA can be a pain for the good kids who want to help a parent, but please consider how destructive some of the information can be in the hands of someone with problems who doesn't really care about the parent - maybe the child with a drug problem or the child with mental issues of their own?
The original post is fairly short, and doesn't provide a lot of detail. OP gave a little more insight in a response post today. I have three things to say about this: 1) doctors often only see a person once, maybe twice a year and that visit is so minimal there is NO way for them to determine if there is an issue and 2) we as family see a person more often and can see the progression more clearly and 3) the simple test, if even done, can be misleading. If we have no POA/HIPPA, the doctors should at the very least take input from family and DO some additional testing!
Too often someone who has early stage dementia can pass off being fine. Sure, don't jump the gun, but DO more exploring of the issues observed, even if only by family. Even family members can be duped, if they don't see the person very often and only for short visits. It could also be some other medical condition causing the symptoms. Thorough testing/input from family is NEEDED.
Comment about repeating stories - sure, many of us do this, myself included. That alone isn't enough, but when OP says "...repeats herself constantly.", flags go up. THIS is what clued me in for my mother. When someone repeats the same statements, questions, requests over and over in a matter of minutes, SOMETHING is wrong and should be checked. There are other signs, some of which I missed because it was prior to the light going on for me (accusing others of stealing items was one - WHO would steal tweezers????) Without the later observations, this made no sense to me (lack of knowledge about the signs, esp the subtle ones.) Did we immediately jump to remove her? No. We tried various ways to keep her in her condo, but it wasn't going to work. We DID take her car away (it was NECESSARY, before she killed herself or someone else!)
Forgive me if I missed it, but I didn't see anything about the doctor not agreeing with impairment, however even if it is posted in this thread, doctors don't always get it. Some have posted elsewhere that doctors ignore input, one said the doctor stated the person couldn't have dementia as nice people don't get this!! Without my input, the doctor mom had at the time would NOT have a clue. Even then, he promised the letter I needed to take over her federal pension, but never delivered (9 months of pestering the office was useless!)
That said, if WE (mostly ME) hadn't been aware and proactive, mom could have been dead by now. We finally got Dx from a nurse from the aide company who tested her. We implemented a timed/locked medication dispenser and started 1 hour aide visits. Less than 2 months she refused to let them in. We started looking for a place, but she refused to consider ANYTHING (AL, brothers offers.) JUST prior to the move, she injured her leg and developed cellulitis. We are all "remote" enough that we couldn't do daily checks on her other than by phone. She didn't have enough sense to have it looked at or even tell us. Her neighbor told me. Lucky for her it was just before the move and OB was arriving the next day. THAT could have killed her quickly.
"People pass cognitive tests because they retain enough function to be orientated to their environment and execute basic tasks"
SOME can pass those simple tests when in early stages, because it isn't that hard. Mom's current doc attempted this test on her despite being 2+ years in MC, and being hard of hearing (hearing aid went through laundry, hadn't had time to get replacement.) She couldn't even finish it. The same test was given to me several months later at my checkup. Thankfully I passed!
Driving and summary TBD posted to this comment.
I will agree that some can "pass" these tests AND that various sensible driving skills are not present in MANY people's repertoire, but... There are indications that driving should be curtailed or stopped. If someone gets lost, has unexplained damages to their car, etc. there is reason for concern. Although many say it isn't legal to take a car away, I would rather deal with the legality of that than the consequences of allowing the unsafe driving to continue.
FWIW - when I was taking my initial driving test, they failed me twice! One said not enough signal, which I don't believe, and because I couldn't do a 3-point turn on a tiny side road with a big station wagon that had no power steering. The second person was a phenomenal jerk, stomping on my foot (was on the brake already) and yelling at me that I almost hit a car and ran over 2 people! The final test the person was perplexed (the previous tests are on the paperwork) and said he didn't understand why they failed me, as he hadn't seen such a good driver in a long time! So, you can't even trust any of them to know what's what. Driving tests don't look for someone to get lost or perform other actions that might result in dings or accidents. Driving skills ARE part of one'd long term memory, so it might be easy enough to pass a simple test, esp in the early stages of dementia.
The various sites I have explored about dementia clearly state that simple aging decline of cognitive function is NORMAL, but other signs of cognitive decline are NOT a simple part of aging. One needs to be aware of the difference AND be observant enough to know the difference.
"In most cases the testing performed in a doctor's office is a better measure of competence than the lay person's educated guess or opinion."
Not from what I have seen! Some don't even use the typical simple test, they just talk with the person and they can skate through this minimal yearly exam.
We (mostly) all understand the concerns you present, but WE can't blanket state that what you are pointing out is the case. We don't know the details. We don't know these people. We don't know what is behind the concern. I would rather see someone be concerned than just fluff it off. As noted in another post, it isn't clear what "out of town" means. I was almost a hour from mom's place when this was very early stage and stayed in touch by phone mostly (was still working then.) I moved further away, so it was about 1.5 hours. Interfacing often enough and knowing what mom's "baseline" was, it became clear that she had something going on. I started my research into dementia then. Sure, I'm no expert on dementia, but I DO know my mother much better than ANY doctor. When she repeats herself constantly during a phone call (not repeating old stories, but asking/saying the same things over an over), forgets she asked me to take her to appts so she calls every other day or so to ask again, is making mistakes with finances (check for $2.39 to pay $239.00!!), clearly there is reason for concern.
I would also say that our mother was totally in denial about having ANY issue. She would say she is old and entitled to forget (true statement, but forgetting what she forgets was the issue!) She would insist that she was fine, independent and could cook. None of that was true. After taking the car, I had to facilitate grocery shopping. Sure, she would buy the "right" things, but she was NOT cooking. Freezer was full of old stuff and veggies would shrivel up in the fridge. She was relying on frozen dinners and boxed crap as she couldn't cook anymore. We couldn't monitor everything, but she clearly wasn't caring for herself properly.
OP and sister know more about mom's "baseline" than any doctor seeing her for 20 minutes/year (2 visits). If no POA/HIPPA, doc should welcome input. Hopefully they can get one of these set
People pass cognitive tests because they retain enough function to be orientated to their environment and execute basic tasks; they may not be as "sharp" as they were previously but that is not the standard. Competency does not require you do not age or have declines; the standard is whether the cumulative declines have reach a point where you cannot function safely. I recently went through a series of cognitive tests for my own baseline since both parents have cognitive issues and found out my IQ has dropped 3 points since I took the same standard test 40 years ago. I can still correctly solve mathematical problems but lost some points for requiring a few more seconds now than when I was 16. People pass driving tests because they retain at least the basic skill level required before DLs are issued. Reaction time is not a critical driving skill; if it was teenagers would be the safest drivers instead of the most unsafe on the road! My mother, years into her short term memory problems and after a complete neurological examination and initial MCI diagnosis was a very safe driver, using good judgement to pick her routes carefully and using red lights for left turns. My father was an unsafe driver before his vascular dementia diagnosis: speeding, changing lanes without signaling and with very small clearance margins and turning out in front of other vehicles - much like the behavior or driving style of many a teenager. Dad could pass a driving test as easily as a teen too. Even though I considered him unsafe because of his judgement difficulties and not his driving skills, I did not take the car (and had no right to do so) until he was deemed incompetent and I became his guardian. I was able to get him to restrict his driving to daylight hours around his home, but he would not agree to stop completely.
Maybe senior parents would not be so "resistant" to offers of "help" if the children were actually "offering" cooperative help and not just wanting to substitute their own judgement for their parents' at the first sign of an aging decline. In most cases the testing performed in a doctor's office is a better measure of competence than the lay person's educated guess or opinion. Writing a letter and providing a doctor with more information allows the doctor to better determine which tests to perform.
If I had been tested multiple times and cleared repeatedly by my doctor, I think I would a bit "angry" with a child who continues to insist she knows better than the doctor and wants to start making _my_ decisions for me.
You are an inspiration in good sense.
I had to laugh about your dad's driving, we have called my mom Andretti for my entire life, she is h3ll on wheels and it is becoming more pronounced as she ages. I am thankful that I live in a different state. Your dad and her would have been great car mates.
Keep helping us stay in our own lane when dealing with an aging individual.
When you say you live out of town, how far out? Your profile shows St Thomas, so is mom on the island or back in the states? If the latter, this could be difficult. If you don't already have any POAs or HIPPAs signed by mom, that could be a problem. Doctor could and should take input from family members, but it doesn't always play out well, esp if you can't be there to back it up.
Bringing up hot topics like driving will definitely get the dander up. It and other topics can bring on anger, belligerence, denials, shutting you out, so it has to be done carefully. It would be best if the doctor can be the initial bad guy. If s/he does broach this subject and from testing determines it isn't safe, s/he should be able to start the revoking process, but beware - many who are told not to drive and/or have a license revoked often ignore it and continue to drive! IF you get doctor to revoke and get notice from DMV that it is suspended or revoked, you will need to step in quickly to move the car. You won't necessarily be able to sell it, even with a POA (the document, if you have one, will specify what you can do and when), but to get it where she can't access it will be key.
There could be anger, threats, tears, any number of reactions, but you have to stand strong. If she is still capable, she could try to fight it or get around it (ask ExhaustedPiper about that!) She sounds like she might be in the early stages of dementia, and quite often people at this stage can surprise you with what they can pull off! It will also probably be the most difficult stage, when dealing with the car and other "privileges."
Wishing you lots of luck and strong backbone! It wasn't too hard with our mother, but it also wasn't pleasant! Thankfully we're beyond all that (car, making the move, etc.)
One other thing...My mom had a wonderful doctor that would talk TO HER. He knew I was taking notes. I had talked to him in private early on. When he retired, the new young doctor would talk around her and say things like...she needs to do this, she shouldn't do that...blah blah! They should never do that with mom in the room. He may not ever understand until he goes through this with his parents. Needless to say, I did not go there any more,..because he didn't get it.
I told Mom I would take her to her doctor and give her private time with him and then I'll go join them to see if there's anything I can do to make things easier for her. It worked great. Good luck to you. It's a tough road. My Mom passed away a year ago. I will miss her forever, but never realized how much I was actually doing and how stressful it was, till she was gone.
"I also have access to her accounts so I can see her spending and put a watch on her credit since she thinks she gave out her SSN to one of those IRS scams."
At this stage she shouldn't need any credit checks, so I would highly recommend freezing her credit reports and alerts on her accounts. Freezing has to be requested with each of the three bureaus and you will get a pin number that you need to keep handy along with any other info needed if there's any need to unfreeze (YOU keep it in a safe place!) This is now FREE to all of us, freezing and unfreezing. She can continue to use whatever credit she has, it just prevents anyone opening new credit, among other things, in her name with her SS#.
Of all places, the EC atty office sent mine out via email. The staff person reviewed the trust document and needed to confirm my SS# to request tax id for the trust. Instead of calling me or asking me via email to contact them to do this, she included it in the email (NOT secure!) and asked if this was correct. I immediately called and expressed my serious concerns. She doesn't get it. Her response was their systems are secure. Sure toots, but once you hit SEND, it isn't on your system anymore, is it???
I spent the $30 needed at that time to freeze all my credit. One time later I had to pay an additional $10 to temp unfreeze one. I also put alerts on every account and credit card I have! Problem is, once the snake is out of the box, you don't know when or where it will strike!
While this is especially important for your mom, given the uncertainty of what she may have given out, IMO EVERYONE should do this, given all the various security breaches. Yes, it can be a pain, but much less of a pain than undoing what can be done to your identity if it is stolen and compromised! All those promises of protecting your information that you have to pay for, is (also IMO) a waste of money. I've had those given for free for a year due to a breach, but they never reported ANY suspicious activity and what good is a year? If they have your info, the criminals wait 366 days (or more) and have at it!!!
The reason your Mom becomes very angry is because She is haunted by the fear of loosing Her memory, (mind) knowing this would be the beginning of the end for Her Life as She knows It. I must admit I can understand your Moms fear because this would trouble me too. I would suggest you meet Moms Doctor privately and express your worries and concern about your Mom, also that She's still driving Her motor car and this is a worry to you. The Doctor can insist that you accompany Mom to the Doctors Surgery in future, and if the Doctor notices that your Mom looses concentration, or is some times forgetful the Doctor can suggest that your Mom stops driving, after all
it is the Doctor Who certifies all of Us fit or unfit to drive.
Good Luck to you RemoteDaughter, and your Mom is so Blessed to have you.
Not in all states. MA requires one to "Self-report" if one is Dxed with dementia. As if....
I would also say mom's resistance wasn't fear of anything, it was dementia LYING to her, convincing her that she was fine, independent and could cook. She said that so many times before dementia that it became ingrained in her. Forgetful? I'm old, entitled to forget sometimes. She wasn't fearing anything! We NEVER mentioned the D word anywhere near her, because to her it meant you were "off your rocker", aka crazy, and that wouldn't be the case. Before dementia she had planned to move to AL when she felt it was needed. After dementia kicked in, she would probably prefer a rattlesnake nest to AL. She wouldn't EVER want to live in one of THOSE places.
As for doc suggesting anything... We had all the POA, will, etc set up long before it was needed. However, I needed a specific letter from the doctor for the pension as it is federal and NO federal entity honors POAs, not SS, VA, IRS, etc. While there, doc says to mom "It isn't safe for you to live alone..." OMG, mom imploded and exploded! That was merely a suggestion, not an order or anything!!! I felt bad for the doc....
whatever is actually going on medically wether it be dementia in some form or something else I might try approaching it all from a different angle. One thing at a time but start with suggesting she get things in place so you are all prepared should something happen in the future. Put you on HIPPA at each of her doctors so they can communicate with you in the event she isn’t able to communicate her wishes or with you in the future. “My friends mother had a stroke and they weren’t prepared so not only couldn’t they get any info about what was happening but they had no input about treatment or what rehab she got”... that sort of thing relate it to being prepared for any possible need in the future rather than something being wrong with her now. Going to appointments with her now allows you and her doctors to get to know each other and you to learn more about how your mom likes to do things medically, interact with each provider. It also lets them know that she has family who are involved and she lets be involved which could come in handy in the future.
i would be very careful not to “take over” or make her feel like you are, ease her into trusting that this is to her benefit not the detriment she is afraid of. Then work on business stuff, offer to set up online banking and bill pay etc, let her experience the advantage of you doing it and decide for herself it’s easier to just have you do it. When it comes to driving maybe suggest again that she try the various transportation options before she really needs them and then just encourage her to take advantage of not “having” to drive. Then when a medical opportunity presents itself maybe the transition of not being able to drive anymore will be easier. With my mom she was sent home from the hospital with “no driving” orders and no doctors were willing to sign her off again until she had a special eval which she never really wanted to do. Then we told her that if she were to drive and have an accident we, her children, could be sued and held liable because we knew she had drs orders and that she was driving. She didn’t like it but it had been so long since she had driven and part of her knew she shouldn’t be. We had the perfect set up for this though because she had had a stroke and we could blame her slow response time and thought process on that.
My YB did all the talking to mom (she looked like a 5yo who got caught in the cookie jar) and took her key. I stood in the background and said nothing. On the way out I said I know she has another key, can you disable the car? He took the battery cable off.
So, next day who gets the nasty phone call? ME. You took my car key, it's mine and I want it back! I was able to say I never touched your key. She asked who did and I just said you're so smart, you figure it out and hung up. Day two. Second nasty phone call, only this time it is to demand I get down there RIGHT NOW and fix whatever I did to her car! I was also to say, again legit, that I never touched her car.
I managed to get it to my mechanic and eventually sold it. It took some extra paperwork, because mom never reregistered it in just her name after dad passed. Thankfully that took the issue away. She didn't have enough going for her to call someone to check/fix it or perhaps go buy something else. She did, for many months, complain and whine about not having it, I don't go far, etc. Eventually that morphed into giving up her wheels was the worst decision SHE made! Great, blame yourself!!!
It does require taking not just the license or the keys, but the CAR itself, and ensure it goes to a place where a) she won't ever see it and b) whoever has it isn't going to return it when she whines and complains (that happened in another thread!)
My mother's doctor never noticed any of my mothers issues or memory issues, because my mother was so good at hiding her issues until she received the letter. I live 10 hours away and I told my mother that I was going coming up and going with her to her doctor's appointment. She kept saying you don't need to do that and I told her I know I don't but, I want to just to hear what your doctor says. I told her as you age it is good to have another set of ears just to make sure you are hearing everything correctly that the doctor is saying. She said no again, but I stayed firm and told her I wasn't taking no for an answer. When I went in and her doctor was checking her over her doctor asked her how's your memory and my mom said "fine, I have no problems". You would have never suspected by my mother actions and her talking that there was anything wrong with her. When my mother said her memory was fine I spoke up and said well mom you have been very forgetful lately, my mother shot me the most dirty look, but I held my ground and her doctor jumped on that and beautifully said I would like to refer you to a specialist (neurologist) just for some testing just to make sure everything is ok. You know as we age our body changes and we want to be ahead of any issues so if there is a problem in the future we have a baseline to refer back to. My mother agreed to the testing.
Since I wasn't able to be there for the testing my brother went with her and my father and after all of the testing was completed the doctor stated that my mother had Alzheimer's and she was entering or already in the mid-stage. I reached out to the neurologist and asked for a letter stating that my mother could no longer drive and live alone. She sent me a letter which I promptly filled out the State of Michigan form and send a copy of letter to have my mother driver's license revoked. I figure if she did drive and something happened or she was stopped by the police they would know why and who to contact. My brother put the letter on the refrigerator so if my mom asked about her car my brother referred her to letter, but my mother wasn't interested in the letter and she was argumentative saying it is my car I can drive when I want. After this happened several times my brother was clever and took the keys and moved her vehicle to his house one day when she was sleeping and my SIL brought him back. He lived pretty close so my mother was not aware what took place. When my mother asked where her vehicle was my brother white lied "Mom remember ***** (nephew) borrowed your car because his is in the shop and they had to order parts and he had no way to work". My mom would always say "Oh yeah, I forgot" "I wonder how much longer he will need my vehicle, I really need to go shopping". It is like out of sight out of mind. Your mom say this over and over, but evidentially she will quit asking about the car. This car question and answer game went on for about 4 years, and up until she was unable to speak she would asked every once in
So I did, and in return the DMV sent her a form that she needed her doctor to fill out as well as she had to come in and take a written driving test.
Luckily for me I already had a diagnosis of Dementia for her so I added that to the original form submitted. In the end my LO bailed on any idea of taking a written drivers test knowing full well that passing it was never gonna happen.
Also, the doctor stated that my LO should not be driving.
So I submitted all this paperwork back to the DMV, and in less then 3 weeks later we received a letter suspending my LO’s driving privilege.
The POA we had for her clearly stated when they can no longer drive that I can sell the vehicle. Which is what happened.
California is where this scenario played out. Whatever state your in I’m guessing they have something similar.
Good Luck
Often doctors do not want to get in the middle of this mess. In CA it may be quite clear what must be done, but it isn't clear everywhere.
I had to chime in. Driving while older is a danger to All. The reflex time is reduced tremendously.
I just wanted to say, her physician would be who you contact.
Let the office know the above concerns.. he or she will have a good chat session with her, anonymously of course. I'm hoping she has a doc that knows her good enough to.
Also there comes a time in point that HIPAA laws need bending.
If a daughter calls in, she can state her concerns, pass it on to the physician.
1-you don't believe the tests
2- she should give up her keys.
3-DMV has a way of helping. In calif, they are supposed to have seniors come in every year, & do a driving test..you may want to Google that in your area.
Goodluck