Has anyone out there just completely walked away - without overwhelming guilt?

If your mom is in a facility, i would try to step away from the daily phone calls. Tell your mom you have a bad cold and need a coiple of days test. Tell the facility social worker you need some down time and that you should be called only in the event of a medical emergency. Then turn your phone off for a week.

There is no way on EARTH you need to be fielding calls about mom every day. Someone is paying thousands of dollars for her care. Let the caregivers do their job. Instruct them they are NOT to call you unless it's an emergency...like the building is on fire. And call mom once a day at your convenience if you must.

Talk to your doctor about helping you with your anxiety. You need medication. Make an appointment today.

I am telling you, friend, if you do not get a handle on the stress in your life? Mom will outlive you.

To answer you question, I think there are times when people do need to walk away, or at least put some distance in the equation. Without guilt? That's a tough one. I like to think of myself as a total hard a**, take no crap, no guilt caregiver. Just turn off the give a damn guy. But I get the shoulda, coulda guilt pangs too.

You articulate your state of mind very well. Your post really got my attention. I agree with Maggie. You've got to get some relief. Step back, unplug moms phone, cut down on visits, or completely walk away. There will always be some guilt and people will criticize even the most diligent caregivers. But it sounds to me your fed up gauge is in the red zone.

It was like that for me until, on the edge of a nervous breakdown, I blacked out doing 85 in my truck. Changed my phone number, made it unlisted and old my mother I got rid of it as I didn't use it, which she believed. The NH had it of course. The palpitations, thundering stomach, constantly checking the phone for messages and jumping out of my skin every time the phone rang continued until the day she passed away.

RainMom, I agree with everyone - you need to find some relief, but often that's easier said than done. The anxiety of each new phone call, of whether there's something more you could have done....those are what I think cause so much tension as you're always on the edge anticipating that something will happen.

Perhaps this different approach might work. Ask yourself if you've done everything you can to make your mother safe. Is there anything more than can be done, excluding your being available 24/7? If not, then know that that aspect is addressed.

I know that's easier said than done; in these situations we never know what will happen to drastically change their lives and ours, but other than what we can control and safety measures we can implement, there is in fact an element of uncertainty that none of us can control. It's really that way with life, whether we're young or old.

Take the same approach with the calls; TAKE CONTROL of them yourself. Call her in the morning and advise of your plans, including that you won't be available until noon. Call again at noon, same routine. Call at night and before bed, same routine. Try to get her used to these checkpoint calls to reassure her, while you're also backing off from taking repeated calls.

I assume you have voice mail, so you can check the messages after she calls. If something does happen, I'm assuming that someone in the facility is going to be calling you as well. Unfortunately, there is a limit to how much we can control uncertainty and spontaneous events.

If she asks for something that she thinks she needs now, tell her you'll work on it and take care of it along with your other plans. Do follow up on that, so she can know that you're not just blowing her off. But don't stop and shift gears to accomplish it right then.

I don't know if it will change her approach, but really, you can't provide any more support by taking every single call, so take control of that aspect and set up the arrangements to your satisfaction.

Be firm though; the first few times you have to tell her you have other things on the agenda will be hard, and she may remind you of it the next time you call. Just tell her you're balancing her needs with that of your family. Period. You DON'T NEED to explain why you can't do more.

Have confidence in yourself and start the process of balancing the control in this relationship, as you don't have it right now but need it to maintain your sanity.

Okay - I hope this makes sense cause it's kinda funny - both "haha" funny and sad funny. When I wrote this it was about 5am. I swear to God I wrote it with the heading question "when getting your nails done isn't enough" and even refreshed the page and saw it listed that way. After posting I went back to bed for a couple hours. As soon as I woke up I came here - anxious to read any replies. And I couldn't find my post. I use my smart phone and it only shows who answered last not the posters name. So I scrolled page after page - crying, of course and thinking " I don't even matter enough for my post to stay up". That and "maybe I just think I posted - this is it - today I offically lost my mind". I had noticed the post headed "has anyone walked away.." And figured at least that person feels like I do - maybe I'll find some answers there. OMG! Anyhoo - I will read your comments with gratitude. In the two weeks I've been here - you all have become my strongest link to sanity, I think.

Many of us know that feeling, Rain..
"It's not me. Yay!!" Post back later on.

It really sounds like you are doing your best and then some. When Mother was in a rehab center following hip surgery, she picked me to be mad at. No reason. She got really mad one day and attempted to throw an (empty) plastic bedpan at me. I left, angry, but was laughing pretty hard by the time I got to the car.
There is no need for constant calling--esp if she is in care. We made it clear to the facility that mother moved to, that WE would call and visit HER. They had my brother's number and he would field the calls for the rest of us. He is able to absorb Mother's anger and figure out if her issues were serious. I DID step away for a month, didn't talk to her or visit her after the bedpan incident. She was having hallucinations on her pain meds, so I can only attribute that offbeat behavior to those. She's calmed down in the year since, gone back to brother's and is doing OK. Change your number, let the people who are being PAID to take care of her do so. You WILL get sick if you let this stress take over your life.

That's one shortcoming of the search and individual poster function. All other boards I've been list automatically list all posts of a poster, without giving the option of the poster being allowed to hide those posts. If we could find all posts by a specific person a lot easier, it'd made these searches more effective.

I too have had the same problem. Now when I post, I copy my post and all answers into a word processing document with the URL so I can find the post that way.

((((((hugs))))) I stopped answering all phone calls when I got to the point that they were triggering PTSD. Guess what? The sky did not fall in. Mother continued as she had been, eventually problems got solved. She was in an ALF and they contacted me when there was a "real" problem. I would limit things you do for your mum to what you can handle and as some have suggested take a total break first. You NEED it more than she needs the things you are doing for her.
I don't care what is causing your mum's behaviour, I am more concerned about your behaviour, You have needs and they are not being attended to, Your mum is being looked after - she is safe, housed, fed and has carers around her. There is no law that says you have to put yourself last and these demands of your mum first. You have a huge load with a severely autistic son and a mother with ALZ. What happens to him of something happens to you? Put the oxygen mask on yourself first. Your husband's and your child's needs and your eed come before your mother's. Take time for yourself, consider seeing a therapist as to why you got yourself into this predicament of messed up priorities and why guilt is running your life.
Have you heard of FOG - fear, obligation and guilt? You are lost in it. Find your way out by not allowing the FOG to rule your decisions. Real guilt is when you have done something wrong which you haven't towards your mum except enabling her. Why not feel guilt towards your husband for not being there for him? False guilt is what you are feeling - which happens when you do not live up to the usually unrealistic expectations of others e.g. your mother. You are allowing yourself to be manipulated by her - disease or not - it is not healthy for you or your family and you are the only one who can change it.

Good luck and blessings to you in this difficult journey. I trust you will start to make some changes for your own and you immediate family's benefit.

I can relate to how you feel as I had a similar situation. There were always daily phone calls with all kinds of issues. It seemed they couldn't solve any issues without me being involved. The facility felt I needed to be called on my job to know that my loved one couldn't locate her comb or that she was just wondering when I would come by, even though I was there almost every day. It was insanity.

I eventually discovered that she needed more care than regular assisted living where she was staying. They were not equipped. It was very stressful to await those calls.

The key for us was moving her to a Memory Care facility. They knew how to care for her and not call me for trivial matters. They occupy her time and she does not call me repeatedly. The facility will call me if there is some reason to call me. That's it. I call them and ask questions. I call and speak with her. I know that she is being well cared for and it is a good feeling.

I hope the new placement for you mother works out well. If they are a good fit, you might see a big improvement.

There is still responsibility, that I would rather not have, but the daily care is in their hands and they do it wonderfully without checking with me on every issue.

I don't have much experience with caring for someone elderly but here it goes. If your mom is in a facility, she or Medicad is paying for her to be there. She is fed, safe and cared for. You don't have to a damned thing you have a severely autistic son that needs care. But ultimatly, you need to put yourself first. There is no shame on getting professional help for you because if you don't take care of you, what will happen to your son? Have you looked at places that have some sort of day care or respite for your son? It might help you reclaim some of your life like discovering new hobbies or ones you forgotten that you had at one time. A group home for your son to move into is worth looking into.

Rainmom, it is the AC Admin people changing your question. There are little tweaks to this forum; there are people whose story is so close to yours you could have written it, and other confusing scenarios. Don't let that get to you.

As for losing it, your clearly understood posting shows that while you may be severely stressed, you are not losing your mind. While you may need help, the truly mentally ill do not notice that they need help.

Keep posting, get it all out, don't stop now. That can help, don't even stop to explain except as you are able or want to. I slightly can understand about the autism part of your issues. Get someone to visit you and your son, maybe from an autism support group.
As for your mom, pick any of the good answers here that you feel comfortable with. If you walked away, at this point, the overwhelming guilt would be easier to handle than how you are feeling now.
Is it time to ask your husband to take an entire day away with your son? Saturday?
Fortunately, feelings change, we feel stronger, then more hopeful. It is at those times we can make better choices so that when the stress comes on, like say for any reason whatsoever, the new moon, the full moon, we can wait it out.

Just don't do anything, sometimes that is all we can do, nothing.
Feel better soon.

Rainmom: You are eloquent and self-aware. That goes a long way in this alternate universe that we caregivers inhabit. "When getting your nails done isn't enough." Ah yes. The breezy self-care tips in AARP Monthly and Oprah Magazine.....churned out by hired hands who are under contract to write XX-amount of words about XXXX topic by XXXX day. Then your friends parrot the buzzwords. Sigh. On the other hand, great insights from the other commenters. Definitely set limits to the phone calls. Certainly consider an antidepressant to help you reset. Even if you're "not that kind of person." I'm "not that kind of person," either. Consequently, my year of valiant resisting was a year of insomnia, monkey-brain, crying jags and appalling food choices. My favorite season was hunting season, cuz I could spend the day in bed while my sig other was in a treestand from dawn to dusk. It took me 12 months to realize that the pride and denial that kept me from seeking medical attention was the exact same pride and denial that keeps my mother from seeking medical attention. It's almost comical. My mother's self-neglect is what set off my funk. So there I was....neglecting myself. After my epiphany, I stepped out of my comfort zone and sought the help that I needed. (And it sure as hell wasn't salsa lessons!)

Ok, would it help if a few of us who feel as overwhelmed as you do agreed to meet you under a bridge somewhere with our backpacks? Inside the backpacks would be chocolate, lots of chocolate, no nail polish, I promise.

Rain mom, are we possibly living parallel lives?! I have an adult son with complex special needs who will always live with us. We love him dearly, but he's also challenging. And I have an increasingly difficult father who calls me many times daily/nightly. I always take the calls, with the quiet thought/fear that the one time I tune it out will be the time it's something awful. And it's been something awful quite a number of times. Yesterday he criticized nearly everything I did for him, yet I get reports from others on how much he brags on me for helping him. Unreal! I don't even want my nails done, I just want to be left alone! And I'd like to stop griping to my ever patient husband also. Others here have offered you great advice and encouragement, I guess I'm just here to say I get it.

So well said, Black Hole!

Great thread with great comments. Send, I'll meet you guys under that bridge but I'm putting a 12 pack and some beef jerky in my backpack.

Quickie update: three phone calls, all initiated by me. Got mom an Rx for Ativan and haldol. If I can get her "behaviors" under control at the new place I'm sure some of the crisis calling will stop. We've been using the Ativan with some success to ease the initial move but after a few days she shows no improvement in accepting things - without the Ativan. So I had to get that rx extended. The haldol was the Drs idea. Has anyone used that with any success?
I'm going to get a dr. appointment for me - by the end of the day. The comment that me denying the need for help is exactly what my mom is doing - well, that hit home.

Rain mom, you're cooking now!

RM, it's been a while, but I believe Haldol was the med that caused my aunt to think my mother was a murderer. Or maybe it was Ativan. This was over 15 years ago so my memory isn't that clear other than I was shocked when I learned what disturbing effects it had on my very passive aunt.

I would ask the prescribing doctor when you could expect that the Ativan would be effective, give it a chance first before trying something else.

Given a choice for a loved one, I just guessing here, since mom was/is combative at times, they are bringing in the big guns (haldol). I am not a doctor and cannot give medical advice, but I have read here that Seroquel made a significant change for someone's mom. If you can consult a geriatric psychiatrist for at least a second opinion. There are severe side effects to most any antipsychotic meds, even ativan is contraindicated for some (but this you will discover). Ask your own new doctor about all your worries. Keep checking back.

Lol, GardenArtist - my mom already thinks the man living in the room next to hers is plotting to murder her! Poor guy looks to be older than dirt and wheelchair dependent.

I have some ideas for techniques re: phone that might help somewhat. The ideas are say outside of the box so I hesitate to offer them. Private message me when you are in a receiving mood, and I will share.
Does your son ever answer the phone or talk to grandma?

Rainmom I am coming late to this party, but just want to say, I am so sorry you have to be experiencing all of this with your mom, and also your son. Do you receive any help or support from siblings?
Everyone has already given such great suggestions already....but one thing to keep in mind, is that some day, she will pass away, and you will miss her (hard to believe that). So be sure to keep the big picture in mind. My mom is gone now and I had spent so much time & energy taking care of her needs (multiple phone calls some days, yes) that now, I find myself not knowing what to do with myself. Except that my (rotten) siblings are making my life miserable over the estate proceedings.

Rainmom, I'm not impressed with Ativan for dementia. It did not help my loved one, but she did wonderfully on Cymbalta. It's for anxiety, depression and pain. It has brought her so much contentment. It's amazing. Different things work for different people.

Rainmom, just remember , the meds are for the docs to figure out. Have them call you when they've done their job.

At one point the folks from my mom's facility were calling me everyday at work, I really never found out why. I sat down with the social worker and told her that my brother or I should be called in a medical emergency. That I was not transporting my mother anywhere in my personal vehicle since she tried to grab the steering wheel out of my husband's hands. That I couldn't push her wheelchair because my knees are both bone on bone. That I couldn't take my mother to outside dr appointments without an aide because I can't talk to the doctor and tend to my mom's bathroom needs and anxiety at the same time. You know what? They listened.
YOU are not the expert here. They are.
Ask them to call you when they've figured out a medication regimen that works.

Babalou, excellent advice! As well as everyone else, hope this day rainmom got the support she needs. Tomorrow is another day, we will still be looking out for you, Rain.

Which bridge is that party taking place?

I am sure that people can die from caregiver stress. Let me suggest how it might happen. You keep going, being strong, unable to admit to yourself what it is doing to you. Because you believe that to admit it would be a shortcoming, or because your siblings would make fun of you and criticize you for your choice to give. And then you would move through a transition zone silent even to yourself, in which you continue to produce help and to drain yourself. And then suddenly...a physical crash would occur that you don't see coming or understand. And its all because you cannot admit to yourself that it is actually too much and could really kill you. You really cannot admit that, because of love or because of belief in self-sacrifice, or because of hope that it could be OK someday if only you tried harder or did more. Or because, well for me, you really hate to think that you could collapse from stress or let it get to you or fail to continue. When I ask "is she worth it" I am sure the answer is NO...yet I keep draining from my own life force and view the distancing as selfish. So its a constant internal battle for me even if I know the obvious answer: that life is ending for her and its not ending for me, and I have to rescue myself first and foremost. It might not be over for a long time, many years may be ahead. But I cannot choose to die from this, and sometimes I push the line too close with stress and involvement. How do I cope? Sometimes not well enough, which leaves it to my body to collapse, which is not good.