How do I deal with the frustration, anger and guilt of giving up everything and it still not being enough?

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I just wanted to elaborate a little bit. I'm 37 with 2 kids, 10 and 18, and a full-time student...one semester away from receiving my degree. Last October my nana (who adopted me and raised me as her daughter when my mom died) fell and broke her hip...within days of the hip surgery she was on life support b/c she couldnt breathe on her own, after 10 days I asked them to take her off of the ventilator b/c i knew that was her wishes, they said she would die, and i said if its time God will take her..well following rehab and a few hospitalizations we were informed that she has "endstage" emphysema and she is declining. She is currently under hospice care, on oxygen 24/7, uses nebulizer treatments, and long acting and emergency liquid morphine, for both the constant hip pain and breathing troubles. I have been preparing myself for her death, as I've been told so many times that she is declining....that she will get sick, get better, but never back to where she was when she got sick, and then evenutally will not get better. I love my nana, and I am all she has. I didn't think twice about bringing her home with me, even tho so many people tried to persuade me to put her in a home, no way. I have no regrets about bringing her home with me, but omg, she expects so much from me, she's demanding and as she has all of her life wants it her way or no way...she's dying why shouldnt it be that way? But, I am really wearing thin...my boyfriend is great support for both of us, but she wont let anyone but me do the majority of the caregiving...i barely have a life outside of the house except for school and running errands, and the last 2 semesters i have barely passed b;/c of worry and stress, or not being able to leave her alone, and she refuses outside help...I've been honest with her about her condition and in the last few days she says she knows I dont want her here and she should go home, even tho she knows she cant be without me...hospice says even tho she is talking abt her home at the lake, it is more than likely home-heaven she is talking about. Copd is a mean disease....its a roller coaster....good weeks of feeling well, then bad weeks of feeling bad, so on and so forth, never ending. I have to figure out how to not be angry when she says stupid things like i dont want her here, good god, I've given up my life as I knew it for her....i dont know what else to do....i will keep taking the best care of her I can, but I have to figure out how to not be frustrated or angry...i dont want her to die with me feeling the way i do now...after my marriage ended i worked really hard to find my own identity and now i feel like i've lost it again....i'm just so confused, sad, resentful and angry with myself for not being more patient...
Top Answer
Hi Pooh,

sorry you're feeling the way you are. I was there and I get it.
posting here will really help. It helped me tremendously and is still helping as my mom declines.

Vent Your Spleen! When you want to gripe, do it and do it here and make sure you do it. The only person you're hurting if you don't release the pressure is you. You're not demeaning anyone or betraying anyone, you're just saving your own life.
Outsiders won't understand and think that you're coocoo but here everybody has been through the mill and many will have some advice, from having an adult beverage to doing deep breathing. (I do both)
Actually, I like to have an adult beverage WHILE deep breathing.

don't listen to anyone who's judgemental because they are just on a different milepost of the caregiving journey and you don't need or deserve any guilt or judgement.

go to the Grossed Out thread and read parts of that... people who had parents with BPD and had to become caregivers. people who lost amazing jobs and left a life behind to step up for mom or dad and in some cases, both.
Amazing caregivers all over the site that will tell you to hang in and we'll be looking for you!

BTW Pooh, you can pooh gold bars and it won't be enough so just know that you are in good company! LOL Many of us are sad disappointments to our charges.....but we gain strength from each other here!

lovbob
OK... have a clearer picture.
That IS what I experienced even tho I am older than you, I had just found the perfect job, had a great place to live and was doing well.
I had to intervene with my mother because of dementia and moved in with her to care for her. Of course I was a villian for doing such a thing and it took 18 months for her to smile at me.
I had to do it. She was going to end up really hurting herself. At the time, I did it with a willing heart but got such abuse you wouldn't believe so I get the resentment. totally normal! Totally sux but it goes with the territory of giving up your life for someone else and then they start with the nasties.

Establish some boundries with your nana and get some outside help through Medicare. I finally had to do some tough love with my mom or I was going to drop dead. I've been at this for over 5 years and now we have a lady living in and without her I would drop dead.

Nana will squawk but you have to take back some control over your life.
Whaddya think? Outside help 4 hours a day, few days a week...?

lovbob
POOH:

Your life hasn't been your own since the birth of your first child at the age of 18 or 19; then another about 7 years later. And just when you've begun to assert total control, your nana comes to take the wind out of your sails.

Still, you're a lot stronger than you think. Hang in there another semester and get that degree! You'll never forgive yourself if you do. After graduation, the stress will go down dramatically and caring for nana won't be as difficult. Considering all you're having to do, your patience is borderline saintly. ... It is time, a luxury you don't have much of these days, that's driving you bonkers.
Pooh: at some point all of us here have had to draw a firm line between our parent's needs and wants. Do the things for nana that are essential and will keep her as comfortable as possible. Allow the good boyfriend to help, nana will just have to understand that you are not 10 people rolled into one. Get a well trained in-home care giver to come for a few hours a week so that you can all go out and take a break from it all. (ours cost $18./hr. ...well worth it!)
When my Mom moved here I felt as though I was in this plastic bubble looking out at all the people who did not have this responsiblity. But when I finally drew some boundaries, Mom got the point and things are much better.
You are doing everything you possibly can for your grandmother...do not heap more guilt onto yourself or allow her to dictate YOUR house rules. I am so sorry that she as at the end of her life, but you are an angel to stand by her now.
Give yourself a big break and do something today just for yourself.
good wishes,
Lilli
You are too young to have to go through this. I don't know about hospice, but I thought they only came at end of life. I agree with the others...you need to find a way to get some pleasure in your life..easier said than done. How is this affecting your children?
First and foremost, I would like to thank y'all for such kind words and support...I searched online for over 2 hours last night before I decided that this forum of support was probably what I'm looking for and I was right...I really cant express my thankfulness for the help i received with my first post. So thank you!!!
As far as getting outside help, she wont go for it. Towards the end of the last semester when her nurse said she really couldnt be alone for the length of time I had to go to school (i go on tues and thurs, and last semester it was most of the day and then a night class too), I had arranged for a friend of mine to come and sit with her and she wouldnt have it....nor would she allow me to utilize the hospice volunteer service that would provide at least an hour or two of assistance at a time, she said she would rather be alone than have someone come entertain her and she didnt want to feel like she had to talk to whoever was here...I told her if hospice thought I was putting her in danger for leaving her alone they would turn me into DSS for neglect and she put on the guilt trip, swore she wouldnt get up or do anything to endanger herself...needless to say, I missed a lot of class...only went to the ones that I had to go to, and really struggled, barely passed while on probation...then at my graduation party (i've already walked, just have to take one more class and complete my internship) my friend told her she wouldnt have to entertain her, and that she would just be here in living room watching tv or whatever, just so she wasnt alone. Nana said that sounded good to her...so i arranged for ms betty to come here monday so i could go on a field trip with my youngest son...she wasnt happy, but i told her I couldnt leave her that long, and they really needed me to chaperone...well, my bf went on night shift this week, so he was here with her, and I didnt have to have my friend come over, nana was thrilled. Had Ms Betty needed to come, i would've got the silent treatment and total attitude and its just not worth it...it would've been for that instance b/c it was important to my son, but its not worth it for me to go and have fun...I guess i look at it this way, I have a limited time left with her, so shouldnt i do what it takes to keep her happy, even at my own expense? Isnt her happiness part of keeping her comfortable and at peace? I did go to the beach with my boyfriend for a couple of hours this weekend, but worried about her and felt uncomfortable the whole time...even if being stuck here all the time is driving me crazy, the anxiety and fear I feel when I'm not here is worse. I am a HUGE Tim McGraw fan, and going to his concerts is pretty much my only hobby, me and my bff had planned a w/e in NC in august to go see him, and she and I had a huge blowout over that last week when it came time to buy tickets. She accused me of putting him before her....said if I was going to follow him around she would go somewhere else b/c she wasnt going to die while i was off touring with him. Boy, i lost it...that's my only fun and she wants to take it away too....then accused me of hoping she would die before then so I could go, wth? And in all reality, she probably wont be here in August, but how dare she say something that out of line. And of course, after I lost it, I felt terribly guilty...my biggest fear is she'll die on me after I've been ugly to her and I dont want to have that guilt...she got her way though, I didnt buy tix. She's always controlled me, her way or no way, and its even worse now....I've considered asking the hospice social worker to come talk to me about this stuff, but I feel horrible for putting these feelings into verbal words, so instead i searched for a site like this.
I try to set boundaries, but it doesnt work...she gets angry and puts on the attitude or cries, and my nana is not a crier....it breaks my heart to see her cry...or even worse she accuses me of not wanting her here, and that pisses me off....if i didnt want her here she wouldve been in a nursing home 6 months ago when that is what everyone wanted me to do...the demands she puts on me by having to be there at her every beck and call is wearing me out, i swear I hear my name 100 x's a day....and if she thinks it is something i wont do (like give her ice cream cones b/c she's already had half a dozen in one day) she will get up and try to get it herself...she cant walk without oxygen, cant tote her tank b/c she has to use a walker, so she'll try to do it without the oxygen which is sooooo dangerous, lack of oxygen is what got her in this mess, altho we didnt know it at the time. Is an ice cream cone really worth endangering her life and having to have emergency morphine treatment? And when I tell her that much ice cream is affecting her hiatial (sp?) hernia and is causing her issues with being able to get food down without blockage, she says she doesnt care, she's dying anyway, that aggravates me. I know what is best for her. I have researched every facet of her disease and other underlying problems, so I have the knowledge, but she wont accept that, so i have to give in to keep the peace and keep her from endangering herself....have even been tempted to put up a baby gate to prevent her from leaving her room, but I dont want to degrade her or make her feel worse than she already does....I dont know how to set the boundaries and keep the peace and her happy....she wont let me.
Taking care of my children was way easier than taking care of her....even the hellish teenage years of my oldest child....with a baby, you do what you want to do, and they accept it, and you can just put them in the car and go, or get a babysitter, but you cant do that with an ill nana...especially one who doesnt allow it. I feel like she is being extremely selfish and only thinking of herself, and that makes me feel like crap too...like I said I feel as if I should just give in and let her have her way b/c she is dying and i dont want to make matters worse for her, or make life hell for me. does that make sense?
And yes, hopsice is for end of life, and according to the doctor and the hospice crew she is nearing the end of her life, may not be immediate, but it is impending, just a matter of time...nurse said today she is declining quickly, and since she doesnt feel as sick as she is, she doesnt understand this and doesnt comprehend the severity of her illness or the importance of keeping her oxygen on...again, so dang frustrating...and her memory and brain function is declining as well b/c of the lack of oxygen, so she gets frustrated when she doesnt remember something i tell her, or doesnt remember tellingme something and accuses me of trying to make her think she's crazy.....just drives me freaking crazy.....I just dont know how to handle it anymore, resentment has set in, and I'm tired...
The kids are handling it ok. My oldest doesnt live here, and doesnt come see her much b/c it really hurts him to see my nana in the condition she's in, so he's no help, and she hurts when he doesnt come see her, b/c before all of this he could do no wrong and was perfect in her eyes...and the youngest and her have really grown closer, and even though he knows she's sick, i'm not sure he really understands how sick she is....he told me the other day when we fought that I'm mean to nana and thats not nice, but its his age....
Ok, I've so babbled long enough....just wanted to give my thanks to y'all and try to address the questions presented to me. thanks again....
celeste :)
Hi, Pooh, you are in a very stressful situation with your Nana being on hospice care in your home, and moving toward the end of her life----with all the physical difficulties and emotional swings that this brings. This is no small thing that you are doing for your Nana. If you aren't getting enough hands-on help from the hospice staff, I agree with the others here that you ought to look into getting more in-home care for Nana. Because you need to get your breaks and rest for yourself. Take care, Pooh. I'm sorry you are going through this. Your Nana was good to you, and you're good to your Nana.
Hi Pooh.
How are things going?

You said your nana has her whole life been -her way or no way? I do not think you can allow this to continue. Does she have any other family?

Does she have dementia to where she does not understand that she is taking over your life and getting her way at your expense? If she does not have dementia - and she is that manipulative, do you think there is any possibility that she is not as bad off physically as she claims? She may be around for another 10 years so perhaps you need to get her to accept more help. Can she afford it?

My dad has been near death several times. We all gather and he seems to rally and come back. But like you said never back to being himself and able to be by himself.

I know it would take 100% of someone's life to take care of him. He made the decision himself to go to a NH but he is not happy and it still messes up your life worrying about how unhappy they are.

But you need to realize Nana may be alive for a very long time and plan for that when you decide how much give to give when she is demanding.

She may be happier if she is treated like an equal and expected to ACT like an equal even though she is the one getting and getting and you are giving and giving.

Why does she think she can have her way all the time and completely have all your time? Is she paying you a lot of money which makes her feel she can do this? I know a lot of older people that hold that over their children's heads. Even though the kids would be taking care of them anyway.
Hiya POOH...I havent been here in foreveah!....I am Bree.
I finally put my momz in a home...after much torment...and tears...My momz has alzheimers, and was always verbally abusive to me, with this it was amplified!
So with much anguish, I put her in, and took her out, and put her in again. Everyone here has been so supportive and kind to me...you will find good people here.
I too am feeling what you are....after 3 months, of continual trouble.Battling with my mother...to keep her there- every day its verbal abuse towards me when i tell her she can't come home yet .She fights for A control of things and me, that I think she will never give up on keeping.
But It was DRIVING ME CRAZY!!! SHE WAS DRIVING ME CRAZY TOO!
She still is ...only I can come home and have a few moments peace.
She misses our cats...and thats the biggest problem. She doesnt accept or believe she is very ill....she argues that nothing is wrong with her- she remember everything. Yet she doesnt recall her getting her meds, her last meal, or even me at times!
I am the only family. The only child. Her brothers do not want responsibility... I am a survivor of thyroid disease and depression...I too had just started trying to get away from the lifetime of poverty and abuse...and now this.
I too feel sooooooooo incredibly alone , lost and abanndoneD!
I grieve a lot... sometimes i dont think i will make it through. I pray to God to help me...he is.
Because I am literally alone.
Few friends I had...those near, have betrayed me and abandonned me...or both.
I have also had to start job hunting in this mess...all to take care of a person who doesnt appreciate the sacrafice of my finances...OR ME.
Still I love my momz....regardless of all past and present problems...
I KNOW YOUR PAIN....
I guess I write this in hopes of you seeing ..'HEY I AM NOT THE ONLY ONE"
I Hope at least that can help.. I am sorry I can not offer any helpful advice..I CAN ONLY OFFER MY LOVE TO YOU, and know that you are not alone.
Bree

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