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This is the question I need answered most. Why do my feelings and needs not count? My mother is living in my home with my husband and me. She needs EVERY meal fixed, laundry done, bathing assistance, help walking from room to room, multiple rides to dr. appts, wound bandage changes, commode emptying. I'm in the process of setting up CDPAP and have a friend who is a home health aid and is willing to help. "But why do you need help?, are you saying that I'm a burden? I knew you would say that." "You can leave the house any time you want." (Yes if it is important and then only for a couple hrs at most between meals.) No more weekend getaways or real vacations. She lived as a hermit, so I guess why would she think that I need time outside the home. I actually have a few friends and like to do things.


She lays in bed 20 hrs a day, comes out for meals and evenings to watch TV with us.


She ignores health problems until they become a crisis, is abnormally afraid of Drs. and treatments. Which is why she is like she is.


I am setting things up, physical therapy, CDPAP and encouraging exercise, so maybe just maybe I won't feel resentful that my life has been overtaken and I can go out without feeling guilty.


She balks at everything cuz if its not her idea its not necessary. And then my heart rate goes out of control.


Sorry for the rant.

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Rant away, wenmal. Too many people think the only person who matters is the person needing the care. WRONG!

You matter. Caregivers matter. Before I became my mom's live-in caregiver and I got POA for her finances, I did this for my two sisters, who would drop everything to care for Mom. I made it clear to my two sisters that the person needing care is HALF the equation, not the whole. The other half are the caregivers. They told me over and over what a difference it made for them that someone cared about them, while they cared for Mom's person and her home.

It's time to be firm about your needs, and hopefully your mom has a pension or other income to pay for her care and for your respite. Otherwise, be frank that she may need to go elsewhere, for YOUR health. Hugs to you, my dear.
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ReneeFrancis Oct 2019
We are only young once and our time for aging is sneaking up on us! So set those boundaries and start to enjoy yourself again!
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OMG .. You are not alone minus the cdpap. I feel yah its my MIL but were in her home so I feel obligated I don't know why we pay half or more of the bills I now have 3 children instead of 2. And she is mean to me when no one is around so I hide in the basement most days with my own illness (Crohn). My relief is my lab puppy I got to save some sanity. I wish you strength and the ability to say what is needed for your mental health.
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anonymous951699 Oct 2019
Ng9,
Can relate. I have cats.
R27
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I'm right there with you wenmal! So frustrating when we are sacrificing and even trying harder than our LO is, we are giving up so much and what we get in return is just the LO expecting more sacrifice on our part (and in my case, it goes unacknowledged completely, which only adds to my frustration.)

Only with MIL's last "event" have I begun to put my needs first. She broke her wrist (climbing between the lawn tractor and the little wagon it tows behind -- in a temper tantrum with two people -- had NO business doing it!) And I've realized, it's a broken wrist - not critical, not life-threatening . . . . and so I haven't simply moved heaven and earth to accommodate her as I usually do.

The doctor wanted to see her 10 days after our first appt. and he would place the cast. I only have Monday afternoon off each week, and 10 days later was going to fall on a Wednesday. So, I spoke up and asked if he would like to see her sooner, on the next Monday, or later -- on the following Monday?

He said, later . . . and all was fine.

Then when we were there yesterday and got the cast, he wanted to follow up 2 weeks later - and I have something already scheduled on that Monday afternoon, so I asked if we could come back in three weeks. And again, it was fine, and no one even batted an eyelash.

Believe you me, in the past, I would have wasted a vacation day from work to get her to that Wednesday appt. and I would have ditched my plans on the Monday and taken her for that two week follow up. But honestly, she doesn't appreciate my sacrifice -- so I'm pretty much done making them when it is not a critical need.

If I don't start to care about my feelings and needs, they will never be accounted for. And the time has come that I'm going to start taking care of myself!!
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rovana Oct 2019
YES!!!
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Girl vent away! You have my empathy. I also have a selfish mother who only thinks about her own needs.

You have to make boundaries and stick to them. When she makes a comment to induce guilt, remind her that she has hijacked your life. Use your own words but push back. "Are you saying I'm a burden?" You could say "Well I had a full life of my own before you moved in and I miss it".

Get the help and get out of the house, your feelings and needs DO matter.
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It is difficult to stay positive amidst accusations, but gently remind your Mom that she is with you because you love her, and you are getting help because you love her and want her to have the best care available, and some of that care must come from professionals. Choosing to do all yourself is as much neglect as doing nothing and there is no shame in soliciting outside help. It may take a while for your Mom to understand this, but as the quality if your time together becomes less task oriented, hopefully both of you will feel better.

Even time out for you and husband is just as much for her well being as yours.

You might want to look into adult Day care to give your Mom the opportunity to enjoy the community 'on her own'.

Good luck. Both of you should better once you get some assistance or respite care.
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Zdarov Oct 2019
Yes, soo have to reinforce the marriage bond more than ever.
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Why can't you say "yes, Mom, it is a burden to have you here. You could help alleviate that burden by cooperating so that you're not SO much of a burden".

Honesty is the only way this is going to get fixed. She needs to go to Day programs, she needs to go to the doctor when YOU think it's important and she needs to hear that you need respite from her care.. "Otherwise mom, you'll need to make other arrangements".
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rovana Oct 2019
Very much to the point. Nothing wrong in simply being honest - communication is very important.
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Your feelings don't count because you haven't let your mother know that your feelings DO count....that you DO need help, for godsake! Ask her why on earth she thinks you DON'T need help, what with all the demands and neediness she has! Plus, she's already blaming you for something you haven't even done by saying she knew you would say she was a burden. She knows full well she IS a burden, even though those words never left your lips. Damned if you do and damned if you don't.

Give me a break.

Better yet, give YOURSELF a break and let mother dearest know what the new lay of the land looks like. That is, IF she'd like to continue living with you. Start making the new rules and sticking to them so that she isn't AS BIG a burden as you've allowed her to be thus far.

If things don't improve, get her placed in Assisted Living asap

Best of luck!
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Anita61 Oct 2019
I would imagine if assessed living was affordable that would have already happened. So often we’re trapped into these arrangements because our parents haven’t planned ahead and can’t afford ou-of-pocket assistance. And then, everything falls in the family until Medicaid kicks in—but only if they’re in need of skilled nursing care. And God knows my Mom would rather die than go into a nursing home. She’s been drilling that into my head since I was (literally) 10 years old. I go back to the song “The Gambler” and “the best you can hope for is to die in your sleep.” Except I’d add “before you get too old and sick to take care of yourself.”
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As long as you wrap your being around her needs nothing will change, you are allowing her to overtake your life.

I would ask myself why you are doing this to yourself? Your needs don't count because you have taught her how to treat you.

Guilt is a self imposed emotion, common sense would dictate that you have nothing to feel guilty about. If you cannot stand up to her then nothing will change.

The ball is in your court...now what?
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Wow..Venting is important..so please do...My mom requires lots of help and does not see that she does! She is always pleased she is “not the needy type”. I am guessing they do not see themselves as others do. I also get real tired of everyone seeing only mom and her issues.. And we are the extension of her..if that makes sense. Sometimes I feel invisible..it is all about mom. I am learning to be more direct with her and even letting her wait at times..tough job..caretaking..
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Hugs! I feel your pain and lived it myself.

It took my therapist to point out to me that my mom was indeed becoming a burden on me in my home. We don’t want to admit it because we have been raised to feel that we are obligated to them.

You will need to confront her. WARNING! Be prepared for backlash. It’s okay. You are going to be miserable anyway. So at least speak your mind. Then work on making changes that work best for you!

Don’t wait for her to make the changes to accommodate your needs. It most likely won’t happen.

Best wishes to you.
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You have every right to FEEL what you FEEL. we are trained to be 'ashamed of our feelings, as if they are something bad!

We're human, We feel. We FEEL things and people putting us down for feeling are just uncomfortable with us being 'imperfect' for THEM.

My son recently handed me some terrible, terrible news---he didn't bother to give me a preamble or warning--just dumped a terrible thing on me. Then followed up with a few anger-based emails and texts, which I deleted.

He WANTS to argue with me. He wants me to believe and accept what he has said/done as being 'just fine' and it's not. Period.

I have gone grey rock with him, I won't answer his calls anymore and emails are quickly read and deleted.

YES, I do have to forgive him and for the sake of family coherence, I will. But he doesn't get to work on something for 6+ months, amping up the anger and hatred and then dump it on me and blame ME for how he feels and expect me to some back with an immediate "I am so sorry for what I did." Cause I am not.

Right now I am beyond heartbroken and sad. DH has taken son's side, so I have no one.

And no matter WHAT I do or say, he isn't through beating me up. (sigh)

Add to that I just finished my first round of cancer TX. 18 weeks of chemo. Now I wait and heal and then do x many rounds of radiation. Has he even acted like this was a big deal?? Nope. Neither have 3/5 of my other kids.

So---I know for sure that the last 43 years have been a collosal waste of time if I put all my eggs in one basket. I sort of did. Glad I worked off and on and that I have a lot of friends. The 'joke' that family is always there for you has proven to be a big joke to me, Maybe my extended family just can't handle it. I'll never know.

You take care of YOU and if mom is being a pill--tell her off and walk away for an afternoon. Or A week.
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worriedinCali Oct 2019
Sending you a big hug MidKid!!! I am so sorry to hear this. Really makes you wonder what is going through someone’s head when they behave this way at a time like this! Whatever is going on with your son, I hope you can work through it and put it in the past. It sounds like going grey rock is the best thing you could have done.
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“ I certainly wouldn’t use the word burden mum, but I have been neglecting other aspects in my life. Since I wouldn’t be happy leaving you alone, in case you needed help, I think it’s a fantastic opportunity to have my friend who is in this line of work to help out. (Point out your friends qualities).
As I know her, it means I would feel happier if I need to go out for a few hours, that someone I trust, is looking after someone I love. “
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Wenmal, sounds like your mother is a narcissist and for these people it is ALWAYS all about them.  The rest of the people on the planet are just wall paper basically there to be used by the narcissist.  So the thing is: You don't wait for them to change - you don't ask them for permission, or to treat you nicely or anything like that.  You decide for yourself what you want to do and what you will not do - set boundaries and stick to them.  And this is going to sound harsh but you basically ignore their ranting and manipulation. Remember Sgt. Carter on the Gomer Pyle TV show?  "I don't hear you." And you don't expect much of anything of them in terms of change. Have you been looking into alternatives to having your mother in your home? Sooner or later her care will just be physically beyond you, so it makes sense to start looking now.
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Hi,

First, my husband has the same level of need as your mother. In bed 24/7 except for meals and a bit of Netflix at night. So, I totally get it. You do Everything. Pills, appointments, support stockings... Me, too.

Second, there is only one way through this: self-care. If we do not take care of ourselves, physically and emotionally, we won't live through this. Physically means working out at a gym and getting strong or at least a looooooooong walk. Also spa days! Emotionally means spending time with other people that is positive and fun.

Third, you do not need permission to leave the house. If she has a comment, respond with when you'll be back. "Why are you going out now?" "I'll be back at 5:00, sleep well."

Fourth, the easiest way to make this work is to make it a routine. My husband, though he cannot send an email or make a phone call or set the table or even get a can of beer out of the fridge, remembers our routine. So, when he looks perplexed that I am leaving, I just say, "Its Wednesday." Then the light goes on.

I also can only leave for a couple of hours, very confining. But I leave every day for a couple of hours, sometimes even twice. Breakfast, I go out, lunch, I go out again. The difference is that my husband is quite laid back about everything and sensitive to not making my life a drudge. It sounds like your mother is also sensitive to some degree. Play off of that. Let her know that you want to go out with friends, or to the gym, or whatever. Let her know that you are having fun! she is your mother! She wants you to have a good life.

One of the most helpful things that was told to me about my mom going into a RC was: "She will adjust." I believed that. And she did adjust. My husband has also adjusted--and so have I. I used to go out in the evenings but I don't dare to do that anymore.

Your mom will adjust, too. It feels awkward and oooky when she complains at first, but set up a routine to leave the house: four mornings for two hours, or three mornings for three hours, or whatever. Stick to it--even if you just sit quietly in a library. Pamper yourself. Make yourself feel loved. It really pays off.

So, you are not alone. Good luck and a hug!!!!!!!!!
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SWOMBO Oct 2019
Appreciate your viewpoint - you've really got it together! I, too, have a husband who's becoming more needy all the time; and I, too, still manage to have a life without creating too many waves. This forum has been a valuable asset and has taught me a lot; and I wish you well!!
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What are your mom's illness or cognitive level. Your profile gives us no information. Is she just lazy and stays in bed all the time? Has a disability? Help us with info.
I agree that you should be candid and if she asks the question about being a burden ( which is a veiled attempt to make you feel bad) then she should expect an honest answer and not be surprised when she gets it. "Yes mom, having you here has totally changed my life and I don’t feel I have much of one anymore"....whoa! That will shock her.
Many times the problem is we turnover any power we have and give it all to the parent. You have a right no matter where you are in this "game" to take your power back.
Basically you do this by not jumping immediately, things are not always an emergency. Hire help and let mom's income pay for it. By all means take some control back. There is nothing wrong with it. After all you are doing her a tremendous favor and gift by letting her live with you. And also, get yourself some counseling with an objective therapist on how to handle her and yourself. It is truly a gift you can give yourself.
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LorraineDe Oct 2019
Good advice about taking “control back”. I will change it to:
”taking all your control back”! If Mom can come out of room for meals and evening TV, she can come out getting Mom out of bed at 8 a.m. to start her and your day. She needs a daily schedule. As for evening, early dinner and in bed by 8, so you and hubby have private time.
Call doctor and have her evaluated ASAP. Tell Mom no meds until doctor sees her.
Take your life back NOW and enjoy with hubby and family. No one is guaranteed a tomorrow.
It may be time for a Nursing Home. If she can’t afford a nursing home start the Medicaid application now as it’s takes a year or longer.
Good luck.
FYI: I went thru this with my Dad 90
who is in NHAL for two years. I just put my 92 yo Mom in NH-Memory Care three weeks ago. They are in same NH Complex. I retired at 60 (widow got SS and Medical and pension from job) to care for both. I delayed my medical issues and am paying for it now. I lost 7 years of retirement fun with friends and family.
I could write a book!
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"Mom, would you rather I take you to a Nursing facility where you can get more of what I apparently are not giving you here in my Own Home?" God knows you Count, Someday you will be Rewatred.My sister is taking care of Sad dad since Mom died a year go and although she live 25 min away, She feel her Life is no long er Her, But refuses to even throw in the Towel.
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To Nurserygirl9 - - "And she is mean to me when no one is around so I hide in the basement most days with my own illness (Crohn)."

JIMO, THAT is abusive & you might want to "document" it for family, doctors or Adult Protective Services.

12 LITTLE WORDS: get a motion-activated nanny cam, under $100, downloadable to your computer.
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keepingup Oct 2019
Good catch. The hiding from her because she is mean when no one sees his something my narcissist mother died as well. I finally used my tablet to video the ugly words and showed it to everyone I could do they could see what I was really dealing with. This lady needs some support for sure.
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Create boundaries. You are not a child anymore and she does not control you.
Just because there is one person sick or old in the house, does not mean that you cannot enjoy your life and do the things you love. It takes some skill and emotional maturity to go around this. With a nurse to help, you can have your freedom.
My mother who is 81, is also very demanding but does not live with me. Only now, at the age of 49, did I learn to create boundaries without feeling guilty. Your life is important, value it because one day you will be old and not able to do that much too. Don't let anyone, including your mother, make you feel guilty for wanting to do things you love and enjoy. Parents can be very controlling and perhaps even jealous that you still have some spunk to you to have fun and be light hearted while they are sick and tired.
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It can be about you. You just have to MAKE it about you, because your mother has no intention of doing that for you.
Sometimes it’s just a matter of survival.
Your mom won’t like it. That’s unfortunate. You need to put yourself first sometimes. We all do.
Be brave, and kick any creeping guilt right in the pants. You’re entitled to take care of your own mental health. In fact, it’s sort of your responsibility, I think. Nobody else is going to do it for you.
You can make your life better.
Someone else said to be consistent about timing your self-care routine. I agree. Give her a schedule to get used to, and she’ll adjust better because she knows you aren’t going to skip town.
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NeedHelpWithMom Oct 2019
Please keep spreading this message!
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Such good advice from many about establishing a routine of leaving the house for regular periods of time. If she cannot be left alone, your mental health is worth the expense of a hired aide. Does your mother have some resources that can go toward her care? If there is adult day care in your area where she could be taken in some days? She will no doubt object to either scenario, but it's your house, so it's your rules. Just like with teenagers when you tell them, "As long as you're living under my roof, you'll abide by my rules." The term "my schedule" instead of "my rules" might be better received..
You will be a better caretaker of you include some joy of your own.
Take back your life!
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Wenmal,

I know exactly how you feel. My 93 year old father passed away about 4 months ago and I took care of him while he was in and out of the hospital and did everything that needed to be done for him during his illness. I did it because I wanted to and no one else could do it. I am still dealing with his loss every day. But everyone keeps asking "how is your mother doing", but never once do they ask how I am doing. Like only she feels the loss so greatly. Well, I do too, and probably more so in some ways, because I was there with him every step of the way. I feel grateful that we were able to get close during those last months. I feel the loss in a very profound way, but no once cares.

And now, I am taking care of my mother, who is a very difficult, unhappy woman. So I know how you feel about not having your own life anymore. And the constant cooking and preparation of meals. Breakfast is no big deal, but dinner is a real pain in the a$s because I do not like to cook, but more importantly, I have to stop what I am doing and get her dinner. Unlike my father, my mother does not appreciate or recognize all the work I do. It's just about her and her needs. And well, my so-called brother is totally missing in action, which makes me angry. And surprisingly enough my nephews don't call either, which is disappointing because I know they love and care about her. But, when the topic comes up about her, it's the same thing. how is she doing? Again, do they every once think to ask how I am doing, no, of course not. No one, but no one knows what I go through with her. Only other caregivers know the difficulty of caring for an elderly parent. It would be nice if someone asked how I was doing and took care of me for a change.

I have been through a lot in the last few years and it has taken it's toll on me. I am stressed to the max and emotionally drained. And vacation, forget about that. Everyone lives their lives and I am stuck in this house taking care of her 24/7. I plan on hiring an aide to come in about 3-4 days a week, so that should help somewhat, but I still need to get away and go on real vacation to Florida or anywhere away from here.
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NeedHelpWithMom Oct 2019
Good for you, hiring an aide. Very smart!
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It’s all about boundaries! If you don’t set them, she will run your life. This is exactly what happened to me with my mother who was used to a very active life before she moved here with us 8 yrs ago. I got to the point of exhaustion with her and my own health took a nose dive. I developed cancer! So now I COME FIRST! She has slowed down some in 8 yrs granted, but she still wants that control and I don’t give it to her. She doesn’t live in our home, but she lives next door. She may as well live here!

You do what you need to do. If I had to do it all over again, I would have moved her into an assisted living home close by. She could have all the interaction she needs right there and I would still have had my life instead of bending over backwards to her demands to make her happy with her new living arrangement here. (After my dad died).

Boundaries are the most important thing in these situations! If they don’t like it, there’s always an alternative in a NH or Asst Living. We can’t live their lives for them. They have to accept change and know we are NOT indentured servants.

I hope I didn’t learn too late. I am dealing with a relapse of cancer and in my 5th month of chemo. That how much energy she sucked out of me. My fault that I didn’t wake up sooner. Sorry for the harsh reality. I am still her caretaker, but with boundaries and she has accepted this.
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PeeWee57 Oct 2019
Best wishes for a speedy and complete recovery. It's good to see that you are taking care of YOU.
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It can be about you. However, it's your decision about how to make it so. Maybe it's not just about guilt, could underlying fear that something might happen while you are gone be involved? Why not start small? Say an hour at a time? Meet a friend for coffee, take a walk, the possibilities are endless. It is important that you take care of yourself because if the caregiver crumbles, the ship sinks.
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This is not easy (as you already know) and many of our mothers are unreasonable and demanding. My mother does not live with me and never will simply because she sucks the oxygen out of life. I can only appreciate your living situation through your words and underlying unhappiness that is so obvious. If she makes your heart rate go "out of control" the red flags are flying. You deserve to live your life even though you made the hard decision to take mom in and care for her. This should not make you the sacrificial lamb to her whims and selfishness. Her personality sounds similar to my mothers and unless you set boundaries (and stay firm in implementing them) she will take over your home and your life. But beware.....the very elderly are stubborn and oftentimes dig in and only perceive their life through their own distorted lens and fail to recognize that LO's have needs as well.

If she is unwilling to accept the boundaries you set in place....remember, your house, your rules....then the time has come to consider placement in a care facility. You can't spend the rest of your life feeling "guilty". Know that you did your best and restore your peace of mind.
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jcubed821 Oct 2019
YES! That is absolutely right.
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Your needs are important. So are everybody else's. It seems mom can not discern that your needs are not being met. Do whatever you must to regain that balance. Remind mom that you love her but that you need to do_______ for your mental/physical/emotional health. She may balk because it doesn't fit into her view of life, but do what you must and don't feel guilty.
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Your mother sounds like a carbon copy of mine, especially with the fear of doctors, neglecting her health, and her hermit lifestyle.

I've been having problems with a lot of pain in my right leg (it's the one I brace on when I get her out of bed). When she asks me what's wrong, and I tell her my leg is bothering me, she launches into a 20-minute spiel on how HER legs hurt HER (her pain is always worse than mine, naturally).

If she hollers for me and I'm conducting business on the phone (or even talking to a friend), she says, "You're on the phone AGAIN? Why?" If this happens while the CNA is here for her twice-weekly visits, she tells the CNA, "She's ALWAYS on the phone! I don't understand it!" She can't accept the fact that I actually like people, have friends, and enjoy my contact with the outside world, because she never did.

And when she needs something, she'll call for me repeatedly until I respond. I've tried telling her to call once, count to 30, and then try again if I don't immediately materialize (if it's an emergency, she has a call button she can push). She still won't do it, and thinks I'm ignoring her. She can't figure out that I may be busy with something that - horror of horrors - doesn't involve her.

I know that part of this is due to her previous solitary lifestyle, and the fact that she now has the self-centered attitude of the invalid. But that knowledge doesn't really help with the frustration of being treated like a machine that exists solely to serve her.

Fight that guilt as hard as you can. It's not your fault that she is the way she is - it's hers. It sounds like you're well on the way to regaining some freedom and independence. Keep at it. Best wishes.
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anonymous971239 Oct 2019
"the fact that she now has the self-centered attitude of the invalid. But that knowledge doesn't really help with the frustration of being treated like a machine that exists solely to serve her."

I could not have said it any better than you did.
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Keep ranting. It will help your sanity.

Learn to "shrug" and try to ignore. You can't change your mother, so stop trying and just don't let her change you.

Good time for the Serenity Prayer.
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I feel everyone’s pain only a little differently. The details are different but ”parent burden” is very similar.

In my case I have finally arranged for assisted living for my mother. Move in is next week and can’t come soon enough! If my mother is awake, she constantly needs something so I am up and down all day and sometimes all night. She stays in bed all day thinking. She doesn’t watch tv, read or have any hobbies. I’m hoping she will participate in the activities at the AL and make some friends.

I learned something new that could be helpful to some of you if you were the spouse of a military person. There is a stipend available to help with AL costs. I am going to check it out for my mother. I don’t know any more than this now but you can search veteran spouse benefits for assisted living or contact your local VA representative.
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PoofyGoof Oct 2019
On the sitting and thinking, my dad does this too. I can’t understand why. And he gets extremely agitated if I don’t do it with him. And he spends hours each day doing this. I am not one to just sit and think. I find it very stressful! I’d rather be doing something, accomplishing something.
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You aren't alone.Insert my dad and we are in the same boat mostly.
I will say that my dad does get an aide three times a week ,and is receptive to any services that would assistance in his care and my well being.

When I have my own affairs or my son's to tend to thankfully I have an aunt who will come given advance notice of course and stay with my dad.I wont let my well being or my son's suffer while carrying for my dad.

I also have me time once a month for my own sanity.We shouldn't feel guilty with wanting to do the same.As well as getting any additional help you need.When your mom says why you need help just say everybody does sometimes and you want the best care for her.Goodluck
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Go ahead and rant. Then realize that your mother will not change but you can. Assuming you can't move her out, get some help in your home. Let someone else cook a meal, do the laundry etc You don't need her permission to get help in your own home. Once you find someone, schedule some regular time off even if it is only 1 day a week.
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rovana Oct 2019
That's very true - you have no obligation to "obey" your mom and your house, your rules. Stand firm, set boundaries. It takes practice but you can do it.
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