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

All of your comments help so much, because you have walked-the-walk. It's now going on 16 years of caring for my mother (she lives with me at 89). I used to think (hope) that I could come to some kind of 'closure' with my mother, so I could 'heal' after she's passed (if she goes before me... !) and also help me to fight away 'regrets'. But, she has always felt an 'entitlement' to whatever concerns me (let alone my feelings) and it has always been a no-win situation. She gloats in the aftermath of talking with my brothers, nieces, etc. without including me in 'their' world (as if I don't exist... and, they are 'somebody') and, after doing all the things to care for an elderly person (and, you know how time-consuming, etc.) this is, she turns her back on me... Katiekate - I love what you wrote about not letting go of your dreams... I always used to love the world and plan for my next venture out into the world... I have been sequestered for so long.... although, in the past two years I forced myself to visit a dear friend in Florida that I hadn't seen since I was a child and a year later, went to Europe for the first time, so I could see where my ancestors were from... (my mother never had a desire to do this, even when 'her' mother, my grandmother, asked her to go to Europe with her.. she told her mother "no", and to this day, doesn't regret it). So, I guess I'm a softy when it pertains to my mother, because she 'plays' me... (I would never let anyone be around me that would be like this... however, she's my mother...).

Back to holding onto your dreams... I so much want to do this... I don't want to let go of my dreams, but like Rainmom said, this caregiving experience does change us... or at least it did me... (being the one one that makes all her decisions... I will also have to go through an intense burial... and, that in itself is so stressful to endure).

To be honest, I think it's impossible to go back to the life we had and the person we were before being a caregiver eclipsed our lives - to much has been seen, endured, and tough lessons learned. I looked after my mom for almost six years and my father as well for the first nearly two years of that six. Mom passed almost four months ago but now I'm executor of her estate so the wounds are cracked open on a regular basis. Now, I've been a chronic dieter for the past 23 years - anyone else? If so, then you're familiar with the phrase "You didn't put the weight on overnight- you can't expect to take it off overnight". And that's how I tend to look at my recovery from being a caregiver- for six years my mothers well-being was all consuming, it's gonna take some time to get to know me all over again. Like my weight - I'll never see my college weight again but I can be happy with dropping a size or two!

I never gave up my dream. I never gave up my future plans.
Everyday I do something toward the achievement of that dream...however small..I keep moving forward.

I have a couple good friends that I can have a cup of coffee with...and I have the dream of the open road. No matter what I am dealing with...at least a few quiet minutes at night I spend doing or planning for this.

It is keeping me sane and grounded.

Update, my mother passed on Boxing Day just after last post. The relief was unbelievable. Things settled down and after a year with my father who is now in the same position..I am again trying to keep calm with difficult circumstances. I have learned though, to take space when needed..and shut the door on abusive comments. The hurt is still with me but perhaps when dad passes on it will lessen...as I can finally let go. Take time for yourself, develop your passions. Take up interests you had let go. I have and it has been great. Have faith that you will have a beautiful future...peaceful too. Lots out there in unexpected places. Smell the roses!!

Dear Heart, Thank you for your post and for giving voice to what many caregivers go through and feel. Being the good daughter is the hardest role in the world to play. I hear your pain and frustration. After my father's stroke it seems nothing went right. Everything was a battle. I tried to so hard to keep things going. And you are right there is no validation, no acknowledgement and for some no relief. My dad passed away 2 months ago and I am lost. I don't know what my new normal is, when all I cared about was taking care of my dad. I blame myself for not seeking help sooner and let the anger and bitterness take over in the last year of his life. It was a fatal mistake. I wish I was better at finding the balance, but I wasn't. I gave all my time, effort and financial resources to the care of my father and it still wasn't enough. He died on me. I don't know when I will be able to find my own life.

When the dust settles and they all figure out they have to sort it out themselves.. I'll avoid the flak, get away for a break and will relax a bit. Has been a hard decision though.. as the only daughter always seems to be expected to carry the load. Pity medical groups do not exercise their power in these situations, it would have helped a long time back and even now. They look the other way!!

I know Annie, you can only take so much abuse... I'm glad you finally took a different stand for your own well-being... I had to also. (After beating my head against the wall for years...,). It does finally feel good to make this decision....,doesn't it?!!!

I have two elderly parents, mother suffered stroke 4 years back, father coeliac. Both with some aged dementia. Being abused verbally by both when I try to help, then having two brothers with Power of Attorney who live hours away and never want to listen when I ring for help...don't believe parents are as bad as I say. Have the whole four against me when I have been doing the care for all this time...finally hit the wall and have decided to shut the door on all for my own sanity and health. Both refused all care I put in place and demand to live at home and I've been accused of everything under the sun. Duty of care is finally over for me.

Yes, it is like being the "push me pull you" animal. I want to do the "right thing (whatever that is)" by my Mom and keep her at home, but at a huge cost to me, my family, and my sanity! Last night was rough; I got over there and she was busy trying to move clothes and items from a closet so she could move a piece of furniture into the closet. First of all, she can't do that because of her Parkinson's so it becomes my task. I tell her it is 8:15 pm and we need to start getting ready for bed. Her answer "I am not tired and I am not going to bed until this is done". So I get it done. She asks "why are you angry with me" and I had to walk away. She said she doesn't have time during the day (do what?) to get her projects done and she has more energy at night and she can stay up as late as she wants. Um no you really can't Mom...someone has to get you in the bed before they go to bed because you cannot walk.

I am so bitter over the state that my life is in and I don't know how to fix it or where to start. I saw a sign on my way to work at a church and it said JOY...J for Jesus, put him first. O for others, put them second and Y for you, put yourself third. But what if there isn't anything left for you?

I am beyond glad I found this site and can get suggestions, but more importantly, people who know what I am going through. I know I am not alone even though I feel like it most of the time.

I pray for each and every one of us. I wish we could all get together and have a reunion of sorts. Would be wonderful to put faces with names.

Take care everyone.

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!!

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...

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 says...like 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.

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...

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.

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...

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 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.

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.

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)