How many of us are stuck waiting for a major crisis?

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How many of us are stuck waiting for a major crisis?

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It's an unsettling way to live.

My mom is not considered incompetent event though she does have dementia, diagnosed last Spring.

She has made it crystal clear that she and she alone runs her life. (But be available when she needs help)

I could list 20 things but last eve during dinner twice I wanted to scream. First a nurse from her primary care doctor called to see how she was doing. Her PC doctor has tried to be more pro-active with my mom and her issues and enrolled her in a program that basically follows and monitors health issues. This is a very good thing. Well my mom could not have been more rude to the nurse. My mom stepped into the other room and got even meaner and told her to "NEVER call AGAIN". Then came out and proudly told me and my husband how she took care of that! No more calls to bother her! I wanted to vomit.

Then later she starts talking about her cottage and going there this Spring. I've already mentioned here that I don't feel she is safe to be there alone. Then my mom tells us she is going to keep the cottage and keep going so she can keep driving. (PA licenses need renewed every two years).

Again I could feel myself getting so angry, she should not be driving now! My husband briefly said something about there being problems with her having declared PA as her official residency (to get the license) and taxes and my mom just looked at him and said "I don't care".

I did not confront her, because it only gets worse. My mom can become enraged.

I'm always wondering how much bad behavior I will have to watch before she implodes and I am left to pick up the pieces.

Anyone else feel stuck like this?

Burnout Family Caregiver Mom Stress

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My brother & I were stuck waiting for a crisis. It finally happened when Mom didn’t follow anyone’s advice after her 1st back surgery and had to have a 2nd back surgery 13 months later (she had dozens of falls injuring her back) then couldn’t walk after the surgery. She too, was in the very early stages of dementia but still competent.

I feel your pain.

If you feel your Mom’s driving skills aren’t up to par, notify your DMV & see what they say.

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Already did that - mom did an end-run around everyone, went to PA and got her license there... Not sure OP living in FL would have much sway when contacting DMV in PA.

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My mom's doctor referred her to a local rehab hospital for driving evaluation. She failed both cognitive and driving portions. They report to DMV and is also in her permanent medical record,

Also her doctor told us, that because she has been diagnosed with mixed dementia and has been told not to drive, if she ignores and drives, and is involved in an accident even if it not her fault, that she can be held liable.

Im in Texas, and you can file a report unsafe driver anonymously

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Exhausted piper I too am waiting for a crisis. I feel for you. It’s awful. I have limited contact with her now. I only saw her once last week. My mother is 95 and is competent. She pays her own bills, goes grocery shopping. She takes call a bus. The only reason she is not driving is because she outlived her car. Her car died 3 years ago. It was a Toyota and was 20 years old. She is a gambling addict and gambled all of her retirement savings away so she couldn’t afford to buy a new car. Thank goodness!!! She could barely peek over the windshield. She certainly could not turn her head in the car while driving either. So I don’t have to worry about her killing someone on the road. She is also a hoarder. She won’t throw anything out. I have talked to an elder lawyer in the past. He said she’s an adult. She can live any way she wants. Just because someone makes bad choices doesn’t mean they are incompetent he told me. So now I too play the waiting game. It hurts. I know how you feel.

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At least she is not driving/killing anyone.

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Oh yeah, that’s another thing, I New York State where I live, you can renew your license for 8 years!!! Crazy!! My mother still has her license!!! She will be 100 when it expires. Also when she got in a car accident when she was 85, a little fender bender, they made her take her road test again. I was in the backseat when the instructor was talking to my mother and she was telling him every fun fact, everyone’s birthday, named all of the presidents, etc. etc. well she talked her way out of taking the road test. He passed her and she NEVER even drove!!!! She just talked her way out of it. They never took her license away!!!

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😲

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I feel so very stuck.
It is inevitable that hubs will mess up, and soon.
All the symptoms are there, and it makes me nervous.
How bad will it be next time?

And then, there are the big crises...earthquakes, fire, flood.
No places left to run!

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Ohio. :-) ?

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Exhausted
Your mom takes the cake. I’m afraid she and I would go round and round and I’ve no doubt she would win.
I know she lives next door in a home you helped her purchase. Can you move? Only just sort of kidding.

You have done everything you could to stop her driving.

The woman who called is a nurse to a woman who has dementia. She, the nurse, can now document how out of control your mom was with her.
I think I would follow up with her to make sure she does document your mom’s behavior. Perhaps this will help build the case should you need to file for guardianship at some point. It also helps the doctor see what you are dealing with. No doubt she would have showtimed if in front of the doctor.
If you can emotionally remove yourself from your mom’s drama, become analytical and observant, a degree removed, it might help you. I know that’s a tall order. When she starts up, record her or get out your notebook and write down, time, date, what happened, it might help you distance yourself and watch for patterns to emerge. Since it was at dinner, it might have been sundowners. She will get worse as the disease progresses. So you might not get the major crisis but rather the more average progressive decline. I’m sorry.

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My mom said the nurse responded "Don't worry I won't call you again" like my mom was proud she took care of a nuisance call, and I sat there wondering what the nurse was thinking and then yes, documenting.

I do plan to call her PC. I worked as a nurse for over 20 years so I know how important documentation is, and I also know squeaky wheels get the grease. (No experience at all with dementia patients though) My mom's PC is competent, but it wasn't until I had a long talk with him last Nov that her issues went on his radar and he began to address them with her. I think he sees through the showtiming now, and her showtiming isn't that good anymore anyway. But yes, I want to make sure all these things are being documented. Thank goodness she took the neuro-psych eval last Spring, because she would never agree to it now!

I don't think my mom gets sundowners. Is that common with Alz? My mom's dementia is mostly vascular but the doctor who did the evaluation did also add in mixed etiology.

Yeah I don't know what to expect, I just know it won't be anything good. Obviously I'd rather there not be a major crisis, but I'm constantly on edge because of her uncooperative and risky behavior.

Thanks for the advice and I am trying to be less emotional about it. Your suggestion about keeping track of things in writing to more objectively watch for patterns is a good one.

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Sorry to say that not all states are like Texas. We had a police officer who knew his Mom should not be driving. He said he was told she had to be in a car accident and the cause had to be her Dementia. Oh yeh, lets kill someone and then we will do something. The VNA I worked for had a client who should not be driving. The son was told this and said he took her to be tested and she passed. I knew this woman personally and should not be driving. Hard in NJ to take a license away. I think there needs to be legislation. Once a person is found with Dementia their driving skills need to be tested every 6 months or so.

Sorry Exhausted you have to go thru with this. Even in the early stages there is no reasoning with a person suffering from a Dementia. What u say goes thru one ear and out the other.

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Yes. I feel stuck too. Dad says he wants a cabin some where. I don't say anything. Things he says that are unreasonable or rude, I try to ignore. It isn't easy.
If he's in pain, I sympathize. Give him some Tylenol. I have been documenting, pictures and audio.

I need to somehow get my father evaluated so the doctor can recommend AL.

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They don't need to be evaluated for an AL. Just may need some assistance. Actually the less they do the cheaper it is. A woman in Moms AL still drove. The AL will do an assessment before he moves in. Now LTC. Yes, they have a criteria and usually a doctor has to say there is a need.

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Exhausted, I’m sorry we (and others) are in the same boat.

Mom’s bad decisions to NOT take meds resulted in a trip to ER in Nov. She was diagnosed with mild neuro cognitive disorder in hospital, told not to drive until passing an eval & test. Because of other family situations, Husb and I knew to take Mom’s keys away before coming home. She’s called us names and threatened to call police because they are HER keys and HER car. In PA, docs are mandated reporters, so if there’s cognitive or other physical decline, they are mandated to report to PennDOT, her license was to be suspended (getting notification from state) and then she could take eval. Unfortunately, psych/neuro and attending physician in hospital didn’t speak to her about MCD. I’m trying to tell her this is the way it has happened and have shown her the psych report with diagnosis, but Mom doesn’t believe me.

Really hoped this event moved things forward with her accepting what is happening to her, but now our relationship is even FURTHER apart than before. I’m the only child. She hasn’t called in two weeks. I’ve left messages on her voice mail.

Thankful for her neighbor who confirmed she saw Mom the other day.

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I have a neighbor that checks in on my dad also. This is a new one across hall because he's blown everyone else out so I dare not embarrass myself to ask that favor of peeking in. 70% of the time he accidentally turns. Phone off ,and other times he can't seem to get to phone in tie if 6 rings although right next to him.
And for meds, I keep a poster board sign in front of his bed. He just had brain surgery to remove benign tumour that was smothering his pituitary gland. So now it's important for hormone pills to be taken to reproduce lost hormones, and he still forgets. other day I had to cancel, the follow up appointment, too overwhelmed because he's drama everyday❗

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Your wording “,,, and I am left to pick up the pieces” really struck a nerve with me, as - a life time ago I said nearly those exact works to my mother.

The big difference in our situations is that when I uttered those words it was at the beginning of my joy ride through caregivers hell.

It was the eve before my mother was planning on doing something incredibly stupid. Selfish and stupid. And - I knew what she was planning to do was going to negatively impact my father as well. In a very big way.

So, there I was on the phone with her - trying to get her to see reason and not proceed with her plan. She got angry. I got angry. And, each word that came out of her mouth got more selfish and self centered with each passing second.

I said “ So as usual, you’re gonna do what you’re gonna do - no matter how badly it effects everyone else?” Mom snapped “That’s right” to which I said “and I’m gonna be the one left to clean up the mess and pick up the pieces”.

“You’re not going to have to do anything” she yelled and slammed down the phone. Well, guess what? Two days later and for the next six years I was picking up the pieces. It was a frickin’ nightmare that I’m still trying to recover from... three years after my mother passed and my role as Chief Piece Picker-upper ended.

I feel for you. I really do.

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I don't want you to re-live the horrible event, but if it doesn't bother you to say, what did she do?

I'm glad it's over for you now. Six years is a long time to clean up someone's mess :(

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So stuck . .between a rock and hard place. My husband and my mom.

I'm 58. My husband is 74. Hes a fall risk now, along with a few other health issues and chronic back pain. The last 3 nights he has fallen. He falls down at least once a day now. Usually later in the day - early evening. He refuses to use the walker. Yet, if he did, when he needed to , it would be easier and safer for both of us.

My mom , 89, a fall risk, and other health issues, and just like your mom. Same mom. She's across state lines. Not much I can do for her from a distance. And since last year, I'm afraid to come anywhere near her. So all I can do is tell the doctors, case managers and whoever . . .I don't think she should drive. I don't think she should live alone. Help me Help her. I don't seem to get anywhere. She's showtiming everyone. She passes the 'test' they give her . .yet they all agree something in her brain is mis-firing. Her rational thinking is twisted.

I feel like I'm getting older faster because of my LO's My grey hair is coming in fast now. I've losing myself. I'm no longer me. I am becoming more depressed everyday. I find a way to rally here and there - but I really am beginning to feel stuck just like you, and worse, I see my life going downhill fast.

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Damn I do know. My dad's 82 I'm 54 . I live his life for him. He fell down twice other day & won't use walker either.
I really like your comment " brain is misfiring now" . My dad no matter how slow and nice I am , cannot grasp logic. Now he's got earwax buildup & been to doctors twice to no final result, causing hearing loss and me yelling! Instead I just don't talk anymore.
It must be hard directing from afar, but you can only do so much. Take some time for you! And if you can get rispite care through husband's medical, that might help. Myself , I think physical therapy in home or at clinic up the street would benefit dads mobility, & not be another tragic 2 day stay on his floor because he couldn't help himself.
Good luck

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Heck yeh! Atleast you can stay calm, although eating away at you. She sounds as stubborn as my dad who lives in a fantasy world that I have to get him down to ground zero reality, which is stressing me out to Max, especially because I'm his only caregiver, and he expects, because I'm paid through state ( 13$ hour,I can't live on)he can be a pig , also a terrible person on alcohol, & the most racist (makes Archie Bunker look like a saint) person I've ever known. His doctor even warned him of " old man behaving badly" just doesn't fly.
My dad is belligerent to alot of people and then forgets how they were their for him . He lives in a studio apt . Next to main st.i'm there'4 days a week. He cruises in his mobility scooter, only the 5th one he's owned in 3 yrs. because I'm now a mechanic too.
We argue and I'm at wits end. I hear it only gets worse. He's not ready for home, & I know he'd die if put there. But alcohol is the 1# reason he won't go and get therapy to atleast be able to walk 2 steps without fear of falling. So, this answer probably could be put in all caterigories of forum.
Calgon take me away!

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He sounds like a treat too Cherie. Maybe he and my mom should meet?

Just kidding, but have to admit sometimes I've wondered how some of our parents on this forum would get along if we had some big social for them? Okay, now all the narcissists, this is your gathering room over here, semi-normal over here, and completely out of it over here. Lol.

My mom's not ready for a care home yet either (she will need to be forced in) but let me tell you when the time comes, I won't think twice.

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"She & she alone runs her life..............but be available when she needs help." The 'be available when she needs help' is the part of the sentence that renders the first part senseless. As long as you're there to pick up the pieces for all of her fails, she'll continue to think she's independent and 100% in charge of her own life. Maybe if you stop being there for her 24/7 she'll understand that at this stage of her life, it's a COMPROMISE. It's not all 'take', mother, there is some 'give' involved as well. The next time she's in need of something, what is she planning to give YOU in return?

This is how we managed to get my dad to use a cane; by compromising with him. We refused to 'do' for him until he 'did' for us. You want to go out for dinner, dad? Sure. But first, we're taking you to the store to get you a cane.

Tit for tat.

Just a thought.

Hang tight

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This is a great idea for some people. My mom was never a compromiser--it was her way or the highway--I think that will be true til the bitter end. Plus with the dementia she has never been able to understand she needs help and is under the impression she can do it all. But wouldn't it be nice to be able to teach an old dog new tricks..

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Hubby and I are also waiting for a major crisis upon which FIL **will** be downsized to a one-bedroom at indy living (at best) or moved to the memory care building (at worst, hopefully) regardless of his protests.

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How about letting go of trying to change her behavior? You will be basically waiting her out until she has a serious accident or illness that lands her in the hospital. You can also make sure that she is moved out of your house. If she returns, she will have new rules in place, and a contract so you can kick her out which you will use as leverage to get her evaluated.

I'd also premptively report her to the police in the area where the cabin is located, and Adult Protective Services and the DMV. Forewarned is forearmed.

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Well I have given up on trying to change her, it's impossible. She doesn't live WITH me, thankfully, she has her own condo next door to my condo. Such an idiot move on my part. Oh, she's also been evaluated. Last Spring she had a neuro-psych eval which took about six hours over two days. Then she got diagnosed with dementia.

I have implemented some "rules" or rather boundaries. It's a daily challenge to enforce them. And on the driving... when she got the PA license I called everyone. The PA DMV, the FL DMV, then the PA police and FL police. The FL cop was very nice and I told him everything. He told me and I quote "Your mom beat the system". I was SHOCKED.

My mom is a real piece of work, let me tell you.

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ALL of us are waiting for the shoes to drop. That's what I call it. We know it is coming and it is terrifying to think about. I try with all my might, and in calm times, to stay in the moment. We can't predict what will happen and when and the uncertainty is one of the worst things for me.
That said, what we THINK is coming might not. Right? We might stroke out instead. Or something. We just can't predict. And that is so tough.

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Love your post, my sentiments exactly. We never truly know what's coming, it does make it tough. Trying to take one day at a time.

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Piper, does your DH do Mom's taxes?

Has someone shown her how much cold hard cash she is going to lose by declaring herself a PA resident ?

I'd show her the amount she is losing. Tell her bluntly that she can no longer afford to live in the condo.

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PA does not tax Social security or pensions and has pretty low property taxes in most municipalities, especially for a condo.

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I don't think you always have to wait for a crisis to occur to intervene. I'd consult with an Elder Law attorney about your options. A court may be able to assist by appointing a Guardian. States vary on what is required, but, I'd inquire about what evidence is needed in your jurisdiction. The courts wish to protect people unable to protect themselves before they are injured. Based on what I read here and see in real life, it rarely come a time when the senior who has mental decline says, I'm not competent, I need help, please make the decisions on my behalf.

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Sunnygirl1,

I contacted several Elder Law attorneys two years ago but realized I couldn't pursue guardianship directly due to its expense (and thought mom would contest it in court) and the petition would boldly state my name (i.e., son vs mom). I'm my mothers primary caregiver. Adult Protective Services (APS) got involved. Worked with 5 APS social workers for 18+ months during crisis-after-crisis (hospitals, police, community reported multiple concerns). County Attorneys office petitioned the court. Swift process and appointed an Elder Law attorney as guardian who, with my assistance, placed my mom in assisted living (48 hours ago).

ExhaustedPiper,

Sounds like my experience is much different than yours, but the commonality is that I knew a major crisis would occur. Without my sharing a lot of details and not wanting to take the attention from your post, I've been living on the edge trying to protect my mom from herself and being vulnerable living on her own. I thought the major crisis would be that my mom would have a major accident (i.e., fall down the stairs) before I could get her the care she needed but resisted. Mom has advanced dementia and several untreated chronic conditions. But mom would often say to me: "I'm not stupid, dumb, or incompetent." That was her defense. Mom isn't dumb or stupid ... she is an intelligent woman; however, after a thorough APS investigation and court ruling, she was at-risk living on her own, vulnerable, and was deemed incompetent by the judge/court.

I care about my mom's health, safety and welfare and I'm thankful I received help, beyond what I could do myself, to ensure she received the assistance she needed (whether or not she realized or admitted she needed).

Day 1 in assisted living my mom said: "I'm having so much fun ... this is the best day of my life!" I hope she continues to feel this way. The journey continues and I wish you and others in your situation the best!

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Someone tries to help her and that is how she treats them? Sounds like mental illness or narcissism. Got the impression she lives with you? If she leaves, how about telling her that since she is running her own life, she better make other plans, she cannot come back to your home. And you will be available how and when YOU feel like it. Again, she is in charge of her life and you are in charge of yours. I doubt this will "fix" her, but it may relieve some of the pain of being bullied.

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Piper; Did you call the doc's office today to seek advice about your mom's continuing to drive?

Have you notified the doc's office, in writing, return receipt requested, that your mother is still driving after the doc informed her that she needed a driving evaluation?

If I were in your situation and "mom" asked for help, I would tell her that I can no longer assist her in evading her diagnosis and the law.

If she became unruly, I would call 911 and have her transported to an ER for evaluation of her mental state.

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“I would tell her that I can no longer assist her in evading her diagnosis and the law.“
That’s a great sentence. Taking a hard stance, using “tough love” is often necessary in dealing with elderly parents.

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We felt stuck but not anymore. Moving mom (she doesn't know) into ALMC in a week! But, it was a difficult road getting there. Your mom sounds a lot like my mother a few months ago. I decided I was not living like that and I took the steps I needed to to get her moved. I did take my mom to a geriatric psych a few months ago and anxiety and anti psychotic meds have helped the rage. Now she's just depressed, and, I think, getting tired of raging. Time will tell.
Set your boundaries. Make a plan of action. Your suffering is optional! best wishes.

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My brother & I were, we waited 10 years and dealt with all the inconveniences. Finally my mother had a stroke, we jumped. She is now in AL near us, and after all this aggravation, she love where she is. Go Figure!

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Same situation and my mom loved AL.

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OH, you get a big hug.

The best course of action: expect to live in this limbo for a long time. Because you will.

You will eventually have to get her into care, as Gemma has described below. Getting your mom there won't be easy but lots of us can tell our stories when you get that far.

My mom is in care but I am trying to keep my 86-y.o. husband with dementia and all sorts of health problems at home. The limbo status never goes away. I do't want to bore you but it can even get harder. My husband has toothaches and swelling but doesn't want to go to the dentist. etc, etc,

I just wake up each morning, focus on what needs to be done that day, and do it. Stay in the day. Eventually the day will come when there are no options: they have to go into care or the ER or something. We will handle that when the day comes.

Your situation is tricky though because while your mom is driving and (I assume) managing her own money) she can be a danger to others and others can be a danger to her. Already "others' were beginning to prey on my mom. We caught it in time. She took the side of the garage out twice. So, this is all really risky and you need to keep an eye on things. More limbo. Just accept it up front.

Good luck and keep in touch!

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Thanks for the honesty. Sigh. I know it's going to be a long and hard road. It's a constant struggle to balance resentment and compassion. Acceptance helps and I'm trying to be more accepting. It's almost like surrendering. I'll never be able to fix her. But you are right, she is in a risky zone. I do keep my eye out.

I'm sorry to hear about your husband, caring for a spouse is different and I think your day to day approach is a good one. I hope you can get him to a dentist soon for pain control. I wonder if cold things like popsicles would help? Or freezing a teething ring. Good luck there. I hope you can keep him at home for a long time and that you have good moments. He is lucky to have you.

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That was my life. My mom lived in a house with my brother after my dad passed away. He couldn’t take care of himself never mind take care of her. She wouldn’t leave him because “what would he do”. I was almost hoping for a fall to get her out. Well anyway he drank himself to oblivion thats how I got her out. Then he passed away. So I would say it’s a horrible waiting game.

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I'm sorry about your brother Val. At least your mom is now in care. Yeah.... horrible waiting game.

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You can begin to make decisions for her when you have a durable POA.
my Mom was reluctant at first, she thought she could do everything herself, though she was already failing to manage the most basic life tasks.
i was finally able to convince her that a POA was a good thing, just in case anything ever did happen to her and she wasn’t able to speak for herself or to write a check.
and a long road from there, but at least I had legal rights to assist her and begin to persuade her to go to Dr Appts.. even though she fights me on it!

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It doesn’t get any easier—- compounded with family members constantly finding fault with whatever you do or don’t do...or making threats...but not wanting to do anything to help and mom has a “mind of her own” right now. Remember she isn’t herself anymore.... and it’s HARD...... really hard....I agree we are in this limbo state for the course. I continue to pray to God for the answers...... stay in the day and do what you need to do for yourself....I have a strong faith that continues to keep me going..... we don’t know what tomorrow will bring—- stay in faith that God knows what He is doing....

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I was told
to check our Teepa Snow utube videos on dementia, Alzheimer’s. They are so informative !! Helped me understand their thinking. And behaviors...

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If your mom is still with it she has rights. If you feel she is a danger to herself or others you can call 911 and have her Baker Acted for psychiatric and competency examination.

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Me! Starting around 2012, I began to view my parents as a freight train coming at me. I've lived my life waiting for the next shoe to drop ever since. Lots of shoes have dropped, lots of stress, missed opportunities, etc. Dad died last November but mom is still a hot mess and I foresee another 10 years of life this way. Things don't get better, they only get worse. We just ping from one crisis to the next. My mom has become this huge drama queen, which I find interesting because the years I was growing up she would not tolerate any drama from me. She would pretty much just tell me to suck it up, wait until I was an adult and had grown up problems. Now, most of my grown-up problems are from dealing with my parents for the last decade :(

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Oh I hear you! My mom is the biggest complainer I've ever known, but when I was growing up she didn't tolerate even the slightest "complaint" even if my need was legitimate. Thanks Mom! Now here I am putting up with all her crap.

Upstream, I know your life got hijacked in a big way, and for a long time. Please tell me your mom is still in assisted living?

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You will have to watch until it ends. That is the sad truth. Your mother sounds like my dad when I first moved in with him. He kept telling me to go home, until I told him that I had promised mom that I would come and take care of him. The thing that will help you to not have your head explode is to accept the fact that your mom will continue to make bad decisions and think she can do everything. On many things you will be able to redirect her on others you won’t. Remember that your mother is afraid because right now she is probably aware that things aren’t the same with her. You take care of yourself and make sure that you make time away from your mom for yourself and your husband. Believe it or not at some point during this you will find humor in the situations created, humor will help save your sanity.

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Nothing is funny to me yet, but I'll take it if it gets here! I'm glad you have gotten to that point.

I do understand that she is aware that things are not the same. It's actually heartbreaking to me given how fiercely independent she always lived. But that awareness is also driving her defensive and reckless behavior. I'm hoping in time she surrenders for lack of a better word. If only she could drop the BS and trust me things could be so much better.

BTW I do make time for DH. We have a tradition of going to our favorite Irish Pub on Wednesdays for lunch and a craft beer they brew right there. The food is fantastic and we are friends with the staff. It's my favorite day of the week. From day one I made sure my mom knows Wednesdays are off limits except for an emergency.

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Having gone through incidents that many of you describe, my 87 year old mother called 911 and was taken to the ER by ambulance for a possible heart attack. She was in a psychotic state when I arrived. The Dr said she didn’t have a heart attack and that they would release her the next day. Because they didn’t know her, she seemed stable to them. I lied and told the Dr that she had been suicidal and that she had lots of meds at home and that if they released her she would most likely take them. In which case I would sue the hospital for releasing her in this state. The next day I received a call stating she was evaluated by a psychiatrist and would be transferred to a private facility for observation. This led to the proper meds and placement in AL where she comfortable resides and is very happy putting an end to years of anxiety for me.

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Well played. I’m going to keep this creative tactic in mind, lol.

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