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

ExhautsedPiper: "I'll know".

Along with "I'll manage" & My Mum's fav "it'll be ok" classic *diamond stage dementia* statement imo.

Quoted (shortened) from Teepa Snow: Diamonds are “clear and sharp”. Cutting & rigid. More posessive. Good cover skills. Like to feel competent & in control.

Let her know you are on her side & she can choose to accept your help (or not). Unfortunately she may have a few bad decisions ahead...

A work colleague's Mother kept driving against medical opinion. Many small dints started appearing on the car. Then a larger accident. The son helped get the car repaired, insurance etc. But the next accident he left the car damaged & I think even drained the petrol while she was in hospital. The skills to arrange repair etc were gone & so without his help the car stayed broken. Of course he coped many angry calls but kept repeating if she wanted it fixed, she could arrange it herself.

I hope you are not in for similar.

disgusted: I just took it at face value. Not in a good frame of mind lately. :(

--Start compiling all her basic info--social security number, driver's license, health insurance account numbers, bank account numbers, contacts for doctors.

--Find out if she has long term care insurance. Are payments current? Call them, pretend to be mom, and ask them to contact "my daughter" (you) if she misses a payment or cancels the policy. Then give your contact info. SUPER IMPORTANT! DON'T LET HER CANCEL THE LTC INSURANCE! Most companies allow the policy to be reinstated after cancellation, if it's done within a couple months. But you have to know it was cancelled in order to ask them to reinstate.

--Create online log-ins to all of her banks, household bills, car payment, credit card.

--Create online log-ins for doctor portals--allows easier communication with doctors.

--Look for all her health coverage info. Look in her house first. If necessary, call their customer service lines, pretend to be mom, and ask for print booklet mailed to mom's house.

--But DO NOT do anything with her Social Security, OPM, Veterans, Medicare, or other federal benefits. Federal agencies don't even automatically allow POA agent to control federal benefits--they have their own applications for becoming a payee.

--Check the home insurance. Has mom recently reduced her insurance because she thought the bill was too high.

--Research local rehabs, decide on one or two. When she ends up in hospital emergency room, you'll be ready.

You get the idea. Do this by any means necessary. Have a friend or relative take her out for ice cream while you stay at the house. Take pix of paperwork with your phone while she's asleep. Do what you have to do. Don't ask, don't tell.

Every single aspect of her entire life is going to fall into your lap in an emergency, and you must be prepared. It could happen next year or tomorrow. Could be a sprained ankle or a devastating stroke. Could turn out she's been doctor shopping for years and taking multiple prescriptions of addictive, mind-damaging medications from multiple practitioners. Could be she slips on a throw rug, hits her head on furniture on the way down, and lies unconscious on the floor for days before anyone finds her--this happened to my mom.

Disgustedtoo, best answer!!! I agree!!!

I think you have to try to put yourself in you loved ones shoes. At what point are you willing to have someone else take over control of your life for you?

I dunno - the way I see it for myself: I AM STUCK in a major crisis. And the crisis . . .seems eternal. *sigh*

I feel as though my entire caregiving experience has been jumping from one crisis to the next. And it’s not just medical emergencies. It’s been financial problems, legal issues, hurricanes, flooding, pet emergencies, sibling-provoked debacles, etc. Even during the quiet times it’s hard to relax because you’re always on high alert. I don’t like to self diagnose but I sincerely think I’ve developed stress related anxiety in the past several years. I used to dream of winning a major lottery and purchasing land for conservation and animal sanctuary. Now, since my caregiving experiences, I dream of having a not for profit respite program as well. I guess that’s the codependent in me...trying to save the world before bedtime lol.

If anyone has the answer to getting a POA from a person lacking insight (before a crises) please share. No POA, do not pass Go. Yes I am stuck here too.

Yep, there done that. Here's what you need to do:
Do you have power of attorney yet? If not, you need to try and get one. You may not be able to do this until some sort of tragedy happens and it is needed. Something similar to my experience, where my mothers friend and Financial Manager tried to steal tens of thousands of dollars from her. It was so traumatic that she agreed to sign over power of attorney over finances to me.
Once you have obtained this, the first thing you need to do is take that power of attorney to the post office and have an address change. Have all of her mail sent to you. That way you will get all of the important documentation that you need to make sure her bills are paid. She might eventually get suspicious and might even scream at you, like my mother did me, but stick to your guns. She will eventually forget that she even gets mail.
Next, you need to talk to the doctor and have him send in paperwork to the DMV stating that your mother is not capable of driving due to dementia or have him require a test to prove that she can still drive. It will work either way because I guarantee you she will not pass the test.
Your mom is going to be a pain in the butt for at least the next two years. However, as the dementia progresses, she will become less difficult to handle because she won't remember anything. She will raise a fuss and then forget.
You have to utilize therapeutic lying. Tell her whatever she wants to hear. That's what the doctor told me to do. It may take a few Incidences to get to the point of taking control, but trust me you will get to that point. Let her yell and scream. I know it hurts. Try to get past that and just keep an eye on her safety.
Please start working towards these goals. It was a two-year process for me. There were so many things that were screwed up about her finances. I couldn't even believe it. Get that power of attorney and get the mail sent to your house.
Also start a Daily Journal writing down all of her behaviors. This was very helpful when I produced this information to the doctors. I had dates and detailed information that a doctor would have no way of knowing. Start today!

Yes. I feel like every time the phone rings, the next life stopping crisis has arrived. I’m so sick and tired of living this way.

Redeyedmd: I did not say anything about canceling Jitterbug. I said brother in law cancelled Medicare part D (RX coverage).

Yep, that sounds like my mom. She's 88 and in a nursing home for now. She had been ok or so it seemed when I would visit, said she liked the food at the "nice little hotel" she was staying at. But tonight on the phone she started yelling at me, saying things were NOT ok and she was a prisoner being held against her will, being forced to eat "whatever garbage they bring" and demanded I come immediately and pick her up to take her home (I live 3+ hours away). When I gently explained that I couldn't she blew up and told me I could go to Hell. Then she hung up on me. This really hurt. Part of me is not looking forward to the next phone call.

I was worried about that "crisis", what it would do to her and what hassle it might mean for us! Obviously there is only so much you can do, but when elders have serious injuries or die, esp if there's an accident in the home or something, questions might arise regarding why we didn't intervene... Uh, maybe because the LAW DOESN'T ALLOW US TO!?!?!?! I just didn't want some APS scope up my butt. I knew we needed to do something and soon. Thankfully we were able to take the car - a lot of nasty accusations and then whining and complaining, but not enough mental status to do much about it!

Ironically her "crisis" actually happened just prior to the date we planned for her to move to MC (adamant she wouldn't move, EC atty said guardianship, facility said no committals!) Not as serious as a broken hip, but still a dangerous condition. I found out from her neighbor that she "bruised" her leg. Never told us or sought medical treatment. It was snowing that night I found out, with 1.5 hr drive and my 4WD out of commission, I couldn't go check it (Thursday night.) OB was arriving Fri night, with instructions to check the leg right away and send pix. I had to threaten him with calling the PD to get him to take her right then to the ER. Turned out to be cellulitis. For those unaware of this condition:

"Cellulitis is an infection of the deeper layers of skin and the underlying tissue. It can be serious if not treated promptly. The infection develops suddenly and can spread through the body quickly. Severe infections can spread deep into the body, and can be life threatening."
Key words: serious, quick and life threatening!

It took two rounds of antibiotics and a long long time to heal. She was lucky the move was planned when it was - my next trip down might have been too late.

YB used this "incident" to draft a letter from "Elder Services" at the hospital and it said she either moves to a place WE pick, or they will place her! She thankfully bought this hook, line and sinker. Madder than a wet hen, but she went with the bros.

Curious about the license and residency rules. All kinds of info online about how long you have before you MUST get a license, but not how long you must reside there during the year to maintain it (lots about school, taxes, etc - maybe the tax angle? It does state you're required to pay a "part time" residency tax.) I recall mom and dad change to FL license, to save on taxes (really it was pointless, because MA doesn't tax SS OR Federal Pensions!) There was some requirement of 6 months and a day to claim residency elsewhere. Also, how does she prove residency - just owning a cabin? Does it have utilities? Car registered in FL? Insurance in FL? How is it that not one person scratches their head and asks how is this possible? It isn't like PA is next to FL!!! I would not think 3-4 months "living" in a cabin qualifies for residency...

Easier said than done, but given that we don't know what or when the crisis will be/happen, there isn't a lot of point to worrying about it (bad advice from me, a sometimes worrier!) I would ensure you keep separate finances, etc, in case she hits someone or something, and perhaps seek advice from EC atty about what, if anything, can be held against you because you were unable to stop her.

I hear you and totally understand what you're going through! My husband and your mom sound like! To make matters worse, sometimes he is in and out of what I call awake-dreams.

On bad days, he is quick to anger and blame me for problems and trying to keep him "sick." Some days, he realizes he isn't alert enough to drive and will let me. Other days - the bad ones - he insists on doing his usual errands even though he isn't fully in touch with reality. I pray the whole time he's gone that he comes back in one piece. I hate to be in the car when he's driving, but I also feel that may be I can help avoid an accident. But then, if there is an accident and we're both hurt, there is no one to help us, and who will take care of the dog? (No children, no close family.) I tried hiding his keys but that was not pretty! Now he's paranoid and looks for them whenever they aren't in his pocket.

When I try to convince him that he is in a dream, he doesn't believe me and blames me. At times it seems like he even hates me.

We will be married 50 years this year, and never in my life did I ever dream we would go through anything like this!

You are not alone. I, like you, am waiting for a disaster.

My heart goes out to you.

I'm at my wit's end! He won't go to see our PCP earlier than his scheduled appt and if I alert her ahead of time, he will know and then put more blame on me. I know he isn't always in his right head and it isn't my "real" husband talking, but he does make me feel so guilty. I am keeping a log of his daily ups and down for our PCP so she can get a clearer picture of what goes on.

Yes waiting for a crisis with FIL and MIL. FIL has dementia and its bad.  He cant even get dressed anymore without help, cant change batteries or lightbulbs or basic things yet MIL makes him drive her around like a queen because she isn't going to sit at home and wait to die.....she resents him for getting sick and messing up her late life plans. He shouldn't be driving around the block much less all over the state. Found out 2 days ago shes leaving him alone a couple times a week now to go out with her friends. She thinks its ok because she says hes probably just sleeping while shes gone. Im so sad the way hes being treated. If it was up to him he would probably rather be in a nursing home than what goes on in his life now. hes sick..... but shes crazy and in charge. She KNOWS and admits out loud he should NOT be driving yet he has to drive miss daisy minimum of 6 days a week. our state requires you to leave info when contacting sec of state about driver who shouldn't be, so Im not going to be the one to go there.....my husband should be, but hes scared of his controlling hard headed mom and thinks its her responsibility and all hell would break loose if he did. So I just sit and wait everyday for something horrible to happen.....and Im sure it will. Thinking about making an anonymous  call to adult protective services but sacared my husband would be so mad at me that it could ruin our life....he would know it was me .....

+1 check out Teepa Snow & her website/YouTube's. Especially Diamond stage.

https://youtu.be/I9OlDFL-FkA

Piper,

You are preaching to the choir! You took the words out of so many people’s mouths. It’s sad. It does make children angry. All I can say is you are completely justified with everything that you feel. Hugs!

I saw your post this morning & thought how well put, especially your opening line being 'it's an unsettling way to live'.

I see your Q anyone else? already has 50 replies. I call it the WFTF club (Waiting For The Fall). Someone may have a better name?

You are not alone my friend.

Absolutely!!..My dad is 95 and has never had any feelings for me.And that's putting it mildly..But I'm his sole caregiver since Mom died (2010).I have a sister in another state and does nothing but calls him every night..and agrees to everything he says ( solidifying her inheritance)..He treats me like crap and always has.Im sure he has did a few underhanded things (finincially) since my mom died to take away from me and give it to my sister.Im quiet sure things will blow up one day unless things change.which I don't expect to happen..He exerated, lies and acts incompetently a majority of the time and my sister is a "gold digger"..Nothing is never enough for her and always wants more.She's "milked" a couple of husband's and now working on my dad..And he's not smart enough to realize.I need to do something before it gets to the point of no return.Any advice?

Me. I am stuck waiting for major crisis(es). My sister in law is 4 years into an Alzheimer's diagnosis. But her caregiver spouse is more than she is. He has an aneurysm and peripheral artery disease. Also verbalized "I can't see and I can't hear." Under high stress, he cancelled their Medicare Part D because "he wasn't going to pay that price." Every day upon arising, I check to see if he's still with us - to put it nicely.

Yes, oh definitely yes.

Luckily, things have been passive for awhile, but always waiting for the proverbial 8-ball to drop. It has been a bit since I have felt like I was walking on eggshells.

But it is that not knowing when .... i.e. waiting for that one fall to happen ....... because she is so unsteady ........and use of her walker alternates between purposely walking without it, with her stating "well, I want to get stronger ", meaning she can only get stronger if she doesn't use it versus accidentally "forgetting it" {{{ with her innocent look }}}.

She either doesn't get it or ignores, that using the walker, she does and has become stronger. But I tell you what, that little 94 1/2 yr. old can walk fast with it !

OMGoodness your mom sounds exactly like my Dad! I feel your pain and understand the struggle. Here are a couple of things we've done that have really helped us through some of these exact struggles with my Dad. His neurologist is the one who made the diagnosis of dementia. And his neurologist is the one who has played the "Bad Guy" in terms of limiting his independence telling my dad it's for his own safety. "You must use your walker because that will help prevent falls. Falls for seniors means lengthy hospital stays and usually rehab after discharge. You can 't be alone for extended periods of time, a couple hours here and there, but definitely not overnight for safety reasons as well." His practice also offers a 'driving test' that simulates scenarios requiring reaction time and the ability to make a quick second decision to avoid an accident or worse. My dad failed his test. He argued about the results with the Dr, not wanting to lose his license. His Dr also stated," I don't want to report this to the DMV, but I can if I need to. You are no longer safe to drive on the roads so I need your word, that you promise you won't drive any longer and you can still keep your license. But you give up the car keys today." Coming from the Dr my dad accepted this because keeping his license was what he really wanted, and he has not driven any longer. We were able to sell his car a few months later which took away even the temptation. My dad can't manage his meds, very well. He gets them confused, did I take that one already? Is this one I'm supposed to take in the morning or at night? I got him 2 of the 7-day pill containers. Now every week, we sit together and put his pills out for each day of the week- morning and night time. It makes it easier for him because now he knows what he's supposed to take and whether he took them or not. I also got a big calendar that I would write all his appointments on and what was going on with the family as well (he lives with us)so he knows all the comings and goings. I work with him to remind him to make sure we put it on the calendar so we don't forget, especially since he now needs to be driven everywhere. None of this is as easy as it may sound. It's taken a lot of prayer on my part to not want to pull my hair out. It's take a ton of patience as well. Some days are better than others.
Here's the suggestions - routine is so important. I can't stress that enough. The more transitions or things out of the 'norm' the more unsettled and snarky my dad becomes. Talk to your mom's doctor-enlist their help in getting a clear and concise message across to your mom. One that backs you up and takes the pressure off of you and your husband to have to continually be the bearing of bad news - 'stealing away your mom's sense of independence'. It might mean you talk to the Dr before your mom goes in for her next visit. Also ask if there is any kind of 'testing' that can be done to see if your mom really should not be driving. Again, it's hard to argue with actual test results. If the Dr doesn't know check with AAA, or even the DMV. I don't know where you live other than PA, so it's hard to know what kind of resources there are out there for Seniors and their Caregivers, but it's worth checking with local and state government offices to see if their is somewhere that can provide you more resources to navigate your way through this time. My dad is not an easy person. It's tough to have him around 24-7. We try to take 'breaks' when we can, just for our own sanity. See if any of the senior centers that may be in your area offer "respite" care, or Senior "Day Care". I hope some of these suggestions might help. I understand how you feel, and there is nothing wrong with you feeling this way about the situation with your mom. Try to remember to take it a day at a time and know there will be good days and a lot of bad days too. Good luck!

Your Mother needs intervention for her dementia and maybe medication and more outside help because like other people with dementia this is a danger to themselves. They are not and I repeat not in control of their mind anymore. I am familiar with a family member that definitely has dementia and no one in my family has stepped up to do anything it's stressful and hurts to be with them because they don't and can't be happy or giving any longer. Remember to think about hindsight and foresight with dementia because it takes its TOLL ON Everyone directly involved there is no solution but treatment everyday . I sympathize with you and am going thru this too so I feel hurt and abused all the time. I will tell you my Dad is in danger too because at 92 my mother is abusing him verbally and controlling him she hid his walker and he fell 4 times I had to pick him up from the floor 2x and I feel sorry for him that he is in this mess. I have tried to intervene with being there but she is not nice and carries on like a narcissistic person does with no care for anyone it's all about her. Paranoia and depression are prominent symptoms Mom has too so she shuts people out and turns them away , I hope someone else sees this and helps or I don't know what's going to happen except that the Dementia is embedded in my mother's mind and very angry and mean.. Take this from her daughter who has given many years and is hurt and crying inside from my mother's threating me abusively and cruel .

I'm in sort of the same boat as everyone. My Mom has memory issues and extreme anxiety and my Dad just has his head in the sand. He wants help - when he wants it- but doesn't want to take any kind of suggestions regarding how to keep things from turning into something down the road. He thinks the proverbial sh*t will hit the fan and I will be there to clean it up (because actually listening to a suggestion that I have so that doesn't happen just is not a good idea for him).

After last year I've decided that this year, I will let them live their lives. I will always make sure they are safe - that's my #1 priority - and healthy, but there's only so much I can do for them, they have to want certain things for themselves too! I'm going to see an Elder Care Attorney soon so that I can get all the ducks in a row because I don't want to have to slog through crap when it hits the fan. That, I'm doing for me, but they will benefit from it as well I'm sure.

At some point, things are going to change because it is inevitable. When that time comes, I'll do what needs to be done. But until then, I'm not focusing on that other shoe.

For those who have husbands or fathers who won't use a walker. I have found that a lot of men will use one of the "better" walkers or rollators that don't look like the ones Medicare provides. I have a Drive Nitro Rollator in red. I had it penstriped. I wish I could show you a photo of it. When I have taken it out, men love it. It has larger wheels, folds easy, and most important it doesn't look like the Medicare walkers. I has a lot more adjustments than the cheap medicare ones. The penstriping really sets it off. it was worth the money.

That said, I still have a problem with my ego, but I am gradually overcoming it.

All of us? I wonder everyday when something will happen. It used to be falls. But no one has fallen in almost a year. Which puts me on edge even more since like a earthquake, we are due.

OMG! YES! Everyday! One thing I did is tell my dad’s doctor I had concerns about his driving. I did this privately. She then had him retake the driving test. He tried 6 times to pass the written part and could not. So he lost his license. He became enraged! For months! My dad was declared incapacitated over 4 years ago. Since my mom died 5 1/2 years ago, my wife and I promised my dad we would keep him in his home as long as we could. That meant taking him grocery shopping twice a week. Very quickly he forgot how to use the stove or oven, so during winter, lived on TV dinners. In the summer, he would drive his electric wheelchair right nextdoor to a bar that also served burgers. But there were constant “emergencies “. He would forget how to use his telephone, tv remote, thermostat, didn’t pay bills, etc. So we hired a company that sent someone in 3 days a week to cook and clean for him. He raged about that, said he didn’t need her. Well the last Sunday in November, he went next door to eat after we brought him home from going out to lunch and shopping. It was dark by 6:00, so people at the bar offered to walk him home. My dad refused saying he could make it home blindfolded! At 11:17 PM, we got a call that the neighbor had found my dad on the ground in the middle of the parking lot, no shoes or socks, pants around his ankles. Instead of turning right to go home, my dad had turned left, gone up to the highway and drove his chair over a 30 foot ravine, then crawled to the parking lot. He had hypothermia and deep wounds, black and blue all over. Spent a week in the hospital. They made it clear they would not release him to home. We had 4 days to find an AL by us, or they would release him to the county home. So he’s been in AL since the beginning of December. He’s forgot about being in the hospital. He calls us everyday to tell us how he’s going to call the police on us, get an attorney and sue us, sell his house and move to another state, he hates us, etc. It’s maddening, sad, and makes me feel guilty. At first, we were going to visit daily, but now I just want to avoid him. We are afraid to take him out to eat for fear he won’t get out of the car to go back in the AL!

I too feel your pain. My 85 yr old dad with dementia lives on his own and because of his up bringing(put In home twice because his mom couldn’t take proper care and would not give custody to my gramps) he will not even look into AL/MC. I moved here a year ago to help care for him but everything I did was second guessed and critiqued by his girlfriend, who now is POA/MPOA. I was verbally fired in Nov as Medical and actually rescinded by lawyers letter in Dec. It had never been taken to the doctors office but his last visit to elder care doctor she made sure it was on file and he was deemed competent to make his own decisions on care. First 3. a new medication for memory loss, PT at home, and family counseling to deal with anger, alienation of adult children and total family discord. NO on all three! Surprised not a bit. I have since bought a house in my state I left to come here and help. Had to think about what is best for me, everything he was told to do by doctors, therapist, and family like do not use canes, use walker or roller stroller ignored. Last summer we were able to take him and have license turned in, we had already taken car away after 4 accidents in three years!) This has been a fight and of course it’s another thing I did to him! The safety concerns never got addressed and it’s a matter of time before he takes a bad fall and seriously injured himself all alone as his girlfriend now called caregiver sold her house and moved into an adult village here in town? There are no easy answers with dementia and it is only going to get worse, please take it easy on yourself(somehow)

Feel stuck? Oh gosh how I can relate. Just went through another trying visit with mom. Went to her PCP and he suggested a move to IL with both AL and MC on the same campus. With smaller living arrangements, it is more manageable for both parents. She will not budge. Three drs. have now expressed the same sentiment. I nearly get her convinced, then two hours later the conversation is forgotten. It's like trying to move the same mountain every time with zero progress. In addition she's been having my nephew bring up from the basement all her material for sewing (she doesn't) in foot lockers, storage bins and cluttering up the main level so that it is becoming once again, a major tripping hazard. Her fixation is on her "stuff" in the basement and constantly attacks both me and my sister as to where certain items are (gone). I hate going there....she's 90, in decent health for her age, but she is making everyone miserable. It's a constant battle of wills and her obstinance will be her downfall. Just a question of when, then all hell will break loose. So...I feel your pain and wish I had some encouraging words to tell you there is light at the end of the tunnel. The only thing I see at this juncture....is a long road ahead and a journey many of us don't want to take.

Take care of yourself. It's imperative.

ExhaustedPiper, so sorry. Find yourself a me space and pillow to scream into!
I was only on the perimeter of Mom's/Stepfather's regarding your issue due to family issues (my siblings). When I was FINALLY ALLOWED INTO THE CIRCLE, I ended up having to make the decision regarding assisted living for both.
Has her GP or his nurse tested your Mother with that memory test that starts out with a word she has to remember, they give her additional testing and then come back to the word she had to remember?
If she fails, she needs full time help. I don't know the State you live, but where I come from, the Doctor can place the person into assisted living by Law.
Mom's GP told her she needed assisted living and Mom had a MAJOR HISSY FIT! I think people could hear her through out the office.
She told him to go to Hell and she'd call the police because he didn't have the right. He told her he did and HE WOULD CALL THE POLICE and they would physically take her. He asked her if she wanted him to call. Mom clammed up and wouldn't look at him.
He told her she only had 5 marbles left, if she LOSES JUST 1, she would be moved out of her house. She lost that 1 marble the next month.
Call a State department like APS to evaluate her. Tell her the person is a friend and act like the person is a friend. Call a reputable in-home care facility to help you get a caseworker to talk with you in a room he/she can talk about options and Mom will be evaluated at the same time.
The caseworker will set appointments for you to visit assisted living homes, NOT NURSING HOMES, to help you with your decision.
DO NOT BE AFRAID TO ASK QUESTIONS, GET THEIR STATE RATING RECORD, LOOK AT WHAT THE RESIDENTS ARE DOING, THE CLEANLINESS, BRUISING, RESIDENT LIMITATION.
Just remember, IF you find the one that YOU feel is perfect and within your money range, don't wait to reserve her space. There were like 3 caseworkers waiting to bring their clients to see the suite I reserved! Lucky we were the 1st to see. It's like bidding on a house!
The caseworker will help with the transition as well as the manager of the facility. You may not be allowed to see her for 2-3 months to help her with the transition.
I hope this helps you. Been there, done that, have the T-shirt, hat, and mug WITHOUT HELP from my siblings and the spawn of the Devil (step-siblings).