Caregivers taking back control, anybody interested?

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I feel very blessed that despite what we are going through that there are places for all of us who are care givers to get help. I also feel that a lot of the care givers on this site are feeling overwhelmed, helpless and guilty, NEEDLESSLY. Let's talk about it. I have a very interesting view point that works great for me anyway. Lets protect our own physical and mental well being.


it would take one hell of a point of view to dismiss or downplay all the different emotions we experience while caring for an elder in their final months / weeks. my mother has been gone since aug 1 and im still all over the place.
We're listening, mystical22. Tell us more.
Captain and Jessie belle. Captain, I would love some more details about how you helped your mom and why you are still feeling "all over the place". What do you mean exactly. I have a lot of opinions and VERY STRONG CONVICTIONS about how and why I feel the way I do. I can start off by saying that all opinions and stories are welcome. I may not be an expert in this field but I did graduate college with a 400 GPA in psychology. I hear a lot of care givers feeling guilty and or taken advantage of. I know everybody's case is different but I live by my rule of thumb which is basic and to me, AND common sense. We are all doing the best we can. I for one will not let my family or my elderly mother who lives with me make me feel guilty for one second. Taking care of our parents who are just elderly or elderly with a dementia diagnoses is hard. Why is everybody complaining that they feel guilty? The elderly have a very strong grip on how to make us feel guilty or like we are not doing enough. It's called the infamous "guilt trip". Why do we let them make us or try to make us feel that way? Who knows, but it seems to be happening to all of us in one way or another. For starters, I'll just say that my sisters are not that involved with my mom. They wouldn't take her so I did. They talk to and treat me like crap. My own mom has NO brain problems, very coherent and she does the same thing. I get NO respect. You know what? You have to demand respect and take control of your personal situation and be your own advocate. I am in charge in my house and I am the boss. I put my life on an indefinite hold to step up to the plate and I'll be damned if I will let others make me feel guilty (mom) or anybody else, especially those who didn't want this tough job. My motto is and always will be... YOU TEACH PEOPLE HOW TO TREAT YOU!! I cannot stress that enough. Enough with the quilt and realize that we are NOT helpless in our own worlds of individual hell. That's for starters. Anyone who wants to chime in, please do so. All I can say is that this tactic and what I believe is common sense, works VERY WELL for me. Joyce (mystical22.) Please everyone join in the conversation. I am a very strong individual to begin with. I do realize that everybody might not be. I would love all of your feedback. Hugs all around.
there is invariably guilt because you cannot change the care recievers date with death. then there is guilt when you try to contemplate your life post caregiving.
im a strong, take charge type also but an elder wants their own self determination and that requires humility and compassion. and mystical, you come off as pretty self confident considering how ever changing an elders needs become as they mortally decline. dementia in particular is a rocket sled ride. its hard to have solutions when the circumstances are constantly changing.
i aint got no education and am leary of those who have.
mystical, you come across as pissed off. It may be just the way I am reading your writing. It is hard to see the expressions on people's faces when they write. Many of the people on the group do have a Cinderella complex. But we all know that Cinderella was actually the "good guy" in the story. There is really nothing wrong with serving other people. The only thing is that if we are victims we wait for a fairy god mother to rescue us by turning pumpkins and mice into a coach. We really have to set up our own life and exit from caregiving. Now if anyone has a spare Prince Charming laying around, that wouldn't be a bad idea. :)
Mystical~I take it you were not raised in an abusive household where you were brainwashed from the beginning that it is your responsibility to to not only take care of your elders but to put them first over marriage, finances and self care? When that abuse continues into adulthood, it is not so easy to suddenly stand your ground against the parents who how told you "You are useless, irresponsible and selfish. As someone who did so well in psychology, you should understand that it takes a life time to over come the damage....a journey of self discovery, getting your self esteem, identity, and overcoming all the emotional gas lighting and FOG. I am sure you are familiar with these terms, and you must know that detaching, setting boundaries does not happen over night. Then there are the anger issues to content with. With dementia, you are dealing with a person who may have been sugar sweet before, but now they scream, attack you, keep you awake all night with sundowning, try to escape the house, have hallucinations, paranoia, and a myriad of other symptoms. If you can be the boss while all this is going on, then write a book to share or better yet, have workshops all over the country to help those of us dealing with the reality of dementia and abuse.
It is just so damn exhausting to constantly be putting rules in place only to have them repeatedly broken and plowed over by selfish people. Over and over and over. Just feel worn my own home where I pay the bills. Ungrateful is the word of the day and don't forget most of us aren't spring chickens ourselves and have been doing this for YEARS already. I know all of this is taking years off of MY life and really it hasn't gotten to the really terrible part yet...
To avoid becoming somebody's case study all I will say is Mystic, it is great that you feel no guilt. Some of us do, and some don't. I am one of those that doesn't because I and only I know the good that I bring to my mothers life every day.
CAPTAIN: I do not understand why you should feel quilty about your moms date with death. Everybody has a date with death and none of us know when that will be unless we have a terminal illness or a crystal ball. As far as an elderly wanting to have "dignity" and self control, I absolutely agree with you. All we can do is try to help them retain their control with dignity, and comfortably. I do not treat my mom badly, No matter what she tries to do to to me knowingly or unknowingly, I love her dearly. Does that mean that I have to tolerate disrespect or and emotional abuse? HELL NO!! I also agree that while this care giving lasts every situation changes and we have to reinvent,rethink and adjust to the ever changing cycles that come with this daunting task w/out letting ourselves be hurt. As far as you being leary of people w/an education, you don't have to be leary of me or anybody else on this site. I started this thread for people to start talking and maybe help each other without being judged. By the way, the way you write tells me that you are not uneducated, but for you to say that about yourself is sad.
Jessi Belle: I am pissed off that my family still treats me like crap. I am not however pissed off about taking care of my beloved mother.I consider it a very loving selfless challenge that I am totally up for. She is my life giver after all!! At the same token I will not be guilted or treated less than by my family. I am my own advocate and I do not need nor want a prince charming or a fairy godmother to rescue me, this was my choice, my destiny. I also do not have a Cinderella complex, I am Cinderella and dealing with it. There is also absolutely nothing wrong with serving people. Did I infer that in any way? I don't think so. I have been volunteering at one thing or another since I'm 10 years old and I am 53 now so thank-you! I am nobody's victim and I am setting up my life as I know it by my rules so I do not get hurt. I cannot figure out why you do not get my point of this forum, please do not judge or assume anything about me or anybody else on this site. It sure feels like you are judging me. That is NOT why I started this forum.
Sharymarie: I was absolutely raised in a household of "physical and emotional" abuse I was told my whole life that I was useless, worthless, stupid, and just like my dad (who was a dead beat dad who abandoned us all.) Oh yes Sharyann, it sure as heck does take a lifetime and I have had 1/2 of my lifetime to ponder mine and try to figure out where the hate came from. I do know this, "hurt people, hurt people." My mom was very hurt in her life. I had to let myself take a seat and try to embrace myself and all of my good quality's and put things into perspective for my own mental health. I'm positive I got it right. PLEASE DO NOT assume things about me, you do not even know me. I didn't say any of this is or was going to be easy. I have written a book. MY BOOK for myself on abuse. My mom has been mean and hurtful towards me my whole life and yet my sisters who didn't want her get the red carpet treatment. Please do not preach to the choir. My mom does not have dementia yet but I have trained myself to be ready for it as beat as I can. On top of everything else, I am handicapped and disabled by the state for a multitude of painful back injuries and maybe even worse, is that I have PSDS, Panic Stress Disorder Syndrome, and my mom makes me want to tranquilize myself every day, but I will not allow myself to be a victim so I do what works for me!! All I am trying to do is open a forum and let people know how I personally deal w/my situation and maybe those of us who are not as strong as me or may not know how to be, can take a page from my book. Also so people can share their stories of woe and seek comfort here. I did not open this forum for ANYBODY to feel judged and I feel that is exactly what you did to me. Thanks a lot, way to go!!
ITIRED: I feel for you:0(. Yes it is so exhausting, that is exactly what I am also trying to say to anybody who is interested getting through this with their sanity and mental health intact. My way isn't by any means everybody's way but it works for me. there are some of us out there that that feel weak and tired and just fed up and may want to give up,( I do sometimes as well) especially if they are experiencing a lack of respect or any such thing and helpless in their own homes, maybe we can all help them not to give up and give them support and encouragement to go forward and protect themselves from any kind of harm, intended or not intended. I was just telling my mom today that I do not feel appreciated at all and that she needs to put some gratitude in her attitude. Who knows if she is even deep enough to get it, but I can keep trying. As far as yours and my situations, This is my message and or advice if you will, (just a suggestion) Be strong, do not get pushed around in your own home (especially if you have children), they will pick up the same habits because we do TEACH PEOPLE HOW TO TREAT US!! I am nipping that in the bud and my whole family is on notice, because I also can only take so much, I too have my limits, and I am my moms only safe haven, she will go to assisted living if it means that I have to save myself. Yes it would be drastic, but drastic measures and drastic times and all that. I will NOT sacrifice my life any longer and be anybody's punching bag ever again. She has damaged my young life so terribly that I will not allow her to destroy the second half of it. That's why I am the boss and I am in charge. It would appear that our elderly all come from the same school and learned how to make us feel guilty and not appreciated and stressed out. "God love them for they know not what they do." That does not mean that we are powerless. This is what I am trying to say. We must be our own advocates and be strong or we will not be able to give the best of ourselves to anybody else. We need to build up some protective armor.
GLADI"MHERE: Kuddos to you, at least you seem to get me.I feel the same way about myself I wonder why I don't see many others that feel that no matter what we are all doing the best we can and no I will NEVER feel guilty or let others try to make me feel that way for doing the best job in the world by taking care of my mom, no matter how hard it is at times. There seems to be a lot of unjustified assuming going on about me. Thank you for not doing that. BYE THE WAY, everybody I did not mean to be the leader or the "punching bag" for those of you who do not agree with me or even those who do, I just opened up a forum for everybody to interact, you do not have to keep the focus on me! PLEASE talk to each other as well about your feelings. I do not need any negativity. Just trying to say how I deal with my life as it is and what works for me. If My choices can help someone great. We do not all have to agree. Thank you. Hugs to all. Joyce (mystical22.)
@ mystic
Thank you so much for opening this thread! It's good to have a wide open space where everyone's stories are welcome.

As for anger -- long ago in an abuse support group, the counselor said something that has stuck with me ever since:


That's the energy for cleaning out closets, deciding what goes in the trash, what gets donated, what gets washed. For tackling a big paperwork thing -- like applying for a Medicare drug plan, or getting a lawyer for POA or estate planning, or Googling all night to find out who makes this pill that doesn't work and who made the one that did work ... or getting up the nerve to post a question here.

Even if it's just emotional -- throwing all one's feelings and concerns on the floor to sort them out. Breaking up the patterns that aren't working. Break it all up and shuffle it around and maybe some new pattern will emerge -- someday.

Thank you!

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