Through the 11 years of caregiving for my Mother and all the horrid sibling treatment, I feel like my autonomy has been altered slowly...

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Almost feeling like a slow death. I've been beaten down so much by my family (including negative words from my mother that hurt so much), that I don't think I'll ever recover from this kind of disrespect, degrading, hateful history. Along the way I sought help from councelors, etc. and none can replace the happy, loving person I use to be. I use to see life as a beautiful experience, but everything is so gone/empty... I truly have lost just about everything since I was the 'good' daughter. I've lost my family and 11 years of my youth during this time. There is so much damage in my heart I just don't know what my future has in store for me now that I've lost so much. It all scares me now (never thought this would ever happen to me). Does anyone have any light to shed on this? Do you ever regain your self identity again?


Truly I wonder if I will ever come back either. I dont feel me or my spirit anywhere inside... The ONLY thing I have witnessed is looking at other people who have lost their "loved one" -- after a month they look SO well rested and GOOD ! ... Sure they are crying daily over the loss, but omg they are getting sleep and living again.
I am Sorry if this doesnt apply to your situation.......
-- (I was raised by both abusive parents, being the "good daughter" I then was caregiver for both, now mother with Alz)
I totally relate to this. For me it's not so much the nastiness of family encounters (and my mother generally is not nasty to me, just self-focused), but the loss of autonomy, the loss of opportunity to pursue my own goals and find my own purpose and meaning in life. Those things are gone, crushed under the weight of duty to a parent and indifference of the whole family to the price that I am paying to fulfill this duty. I feel invisible. I feel paralyzed, spiritless, like it's all I can do to get from one day to the next, let alone find any joy or meaning in it. I feel so bad for every one in this position, and the worst part of it is that nobody sees it. Nobody acknowledges it. You're alone with your despair and loneliness. I know. I'm there too.
Thank you Carla and mica... you 'get it'... because you feel what I was trying to express. It's a numbness after all the heart-felt 'duty' to want to help one have a 'quality' end to their life, and yet... ironically, you loose your own being and the joy that you once knew. It's like getting the wind sucked right out of you and you're right Carla... nobody acknowledges this (or wants to)... especially, those closet to your. It just doesn't feel right (humane) that it should be this way. Then, time passes... the world changes around you and you feel a big sense of loss... especially with your 'self'. I still try to keep 'pushing' to 'find' my 'self' but after all this caregiving it's difficult to even put things into words... I feel like a lost child... and in my case, lost without a mother, father or family. Sending everyone in this situation much love.
Heart, I know exactly what you are saying. People can tell us how blessed we are to still have our parents. They don't see what we have to deal with each day. Mostly I feel like an object to be used, bossed around, and kicked. When taking care of old people, the only thing we can do is take it and walk away. It wears at the spirit and pretty soon we feel like no one respects us except ourselves. There's always that little hopeful us inside hoping things will be better soon. But time wears on and on, and we start to wonder if it will ever end. And it suddenly dawns on us that our own lives might be over before this caregiving journey ends. We'll have spent our last years on earth wrestling with the devil. We're worth more than that.

Heart, our parents don't deserve us. We deserve to be happy.
Thank you Jessie... Yep you're right... It's a carefully orchestrated mix of trying to balance your life and theirs... which slowly becomes almost only 'theirs'... because we're fighting their doctor/facility/financial, etc. care (which we all know is a struggle trying to do... while waiting in lines or on the phones or in the dr offices which only seems to get worse). Then add to the fact that many parents what 'their' independence to be 'heard' which adds to the 'wait' times... and before you know it the day is gone... the week is gone...
We hear so often about the wants and needs of the elder person. They want this and they want that. And we are the only one providing much of anything at all. But we should be willing to sacrifice more and more so they can have this sense of control and more enjoyment. And sometimes I want to ask, "What do you think I am? Bug squash?" Many of us caregivers are also senior citizens who don't have many years of our own left.
Now that I think of it, if 'only' we could have some 'compromise' with head-strong parents, siblings, etc. everyone could benefit. But, in most cases people generally think of themselves and not what the other person is going through (and sacrificing). It really shocked me when I was younger and beginning the 'process' of caring for my mother that my siblings, friends, etc. could be so cold and heartless (only care about themselves). I thought about it on my way to work today (than God for my job)... that I've just about lost 'hope' for human kind (except for the chosen few)... so sad. That's why this site is so 'in'valuable... This is why I think highly of all of you on this site...
Heart, Your words could just as well be mine! I know exactly what you mean! I feel like I am not here, or dead or just half alive. It is as JessieBelle wrestling with the devil each day. Not only am I dealing with Mom's terrible demise and constant incontinence, wounds, etc. but her financial stuff is mind boggling and my stomach is turning each day. I am so sick of dealing with hospitals, surgeons,doctors, and nursing homes even though she is home now.
I have always been a private person and I feel like thousands of people have walked into our lives due to the continual medical crises and seen the suffering and I just hate that!
It feels like I am in a huge never ending tornado that is spinning and spinning and more and more larger flying debris keeps getting added to the storm and hitting me. I wonder how long a person can take this and wonder why the storm just won't stop raging so I can finally access the damage and pick up the pieces and get on with life if anything is still left.
I also wonder why it seems people think a caregiver is weak and seek this time to pounce or dump on us. I have lately looked in the mirror and wondered if I am really still here. I don't know what I would have done without all the wonderful people on this site that understand just what it is like to go through this and be in this place in life. I wake in the middle of the night to attend to Mom and think about everyone here that may be doing the same and I feel less alone.
Yes Katie, we on this site know what it means to be segregated from the rest of the 'real' world and to be 'treated' differently from the non-caregivers. There are so many facets to being a beautiful person as a caregiver that no one will appreciate but us here on this site. When you combine living for (at least) two people while sacrificing your family, work, dreams, mental health, physical health... your life... it is so much to bear (this is why so many people turn a 'blind' eye to it and isolate us from the 'rest' of the world. At least this site gives us the strength and courage to be ourselves... speak our minds (no matter what it is)... let out the frustration(s)... give and get love and compassion and meet new people who understand and care what we're going through. We're not alone here... I'm so proud to meet someone like you through this site... I understand what you're going through and keep writing... Let's try and beat the odds in getting through this somehow... Stay well... tons of hugs...
This is a great discussion....I took the route to sending father to skilled nursing after losing battles, becoming a bitter shell person after a few years. The hardest thing is the feeling that you are sacrificing your personality, heart, soul, joy, kids, marriage all in order to do "the right thing".

You lose a part of yourself when the only thing you feel like you are destined for is cleaning up other's MESSES! Some are real fecal messes, some are paperwork messes, house and hoard messes and financial messes. Our lives become a mess, because that is all we end up doing!

BUT...we are all in the same boat. All of us are unique in our situation. Some of us are in "yaghts" and have the money to pay for care. Some of us are in "fishing boats" where there some money, but maybe not enough to last long enough, and some more of us are in "Huck Finn's board raft" with no resources and paddling like crazy to keep from sinking!!! :)

Keep up the good conversations. After a few months off from caregiving, I do feel better, it is easier to get along with my spouse, I do have hope for the future. I feel like I have lost such a huge puzzle piece of my life. My fervant prayer is that I have 20 years left to enjoy me and my kids. This site is such a blessing to all of us!!

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