This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
Judy- Thank You it has been difficult trying to take care of dad and then having to take care of a little one. Connor will be 6 in nov. he was 3 when all of this with dad started and at that time i was staying with dad 12 hour days with a 3 yr old to have to contend with also. It was very trying to say the least. To try to meet dads needs and also a 3 yr olds. I still to this day do not know how i did that. I know somedays i think that if it were not for connor i would just leave and never come back. I know I would rather someone beat me to a pulp to have to go over there. So i understand about the slitting of the throat thing on the drive over there. Me too!!!! Love and hugs stormyyy
I'm going to say something and I hope I don't offend anyone. Especially Bookworm who I absolutely love and admire. Stormy, you can't look at Bookworm's life and equate it to yours. Book has been used by her family since the day she was born. She is a victim in so many ways and she has been held captive by her siblings and parents. Book is someone that endures more suffering than anyone I have encountered on AC. We all agree that we don't know how she does it, but you can't look at her life and try to take inspiration from it in as much as you should be doing more. No, that's not the way it works. Book should be doing less and I wish we could all fly to Guam, jump out of a plane, kidnap Book and bring her back to the states.
Shit, she could live with me. We need to do our best to support Book and LET HER KNOW that there really is another life for her. She does not have to be the scapegoat for her parents and sibs. She deserves a million times better.
Stormy, you deserve better too. Here's what you do. Tell your sis that you are no longer going to be taking care of your dad. Tell her that as of December lst, you are done. She can check into what Medicaid can offer or not, but you are done. Dad can accept the care of the person he would not prefer, or not. You are done.
At some point, we all have a right to say no more. Stormy, you dad needs a lot of care. He could get that in a facility. Your Conner needs the mom who so desperately wants to be with him. He is a child growing up and his confidence and values are being formed at this time. Your dad is an old man who has had a great life and is in decline. Which one do you want to nurture.
You can't save your dad, but you can visit him and be an advocate for his care. If he feels that you should be by his side everyday to the loss of your child, then he is not thinking right.
I'm sorry to sound like such a cold hearted bitch about this, but there comes a time when you know it's not right. There comes a time when the honest recognition of the commandment to honoring parents and balancing that recognition with the fact that you have been an abused tool for umpteen years deserves consideration.
Book: Your dad has always been unkind to you. Your mom was never really a mom. Maybe it was a mental illness combined with Alz. Who really knows. What I know it that it wasn't your fault. I know you are thinking about this and I know that you have no idea of what you would be if you could not define yourself as your parents caregiver. What a huge challenge that is for you. You have spent your life at the mercy of what your parents offered, which was very little to you as a child. Book, you are not a child anymore. You have an abundance of siblings who will inherit the land and houses your parents own.....and this does not include you. You are a shining star and worthy of respect and love. We love and respect you, each and every one of us. No one can save you, however, from more years of unpaid and unsupported servitude. Only you can do that. I know it's hard and I am not asking you to make any decisions right now, but I am asking you to think about it. I know your dad speaks and he is mean. Does your mom ever speak. Do you think she even knows that she is alive? Are you just tending to a body that nobody inhabits? Would she be happier to be beyond this continuing necessity to keep the body alive?
I apologize for this post. I could delete it, but I'm not going to do it. There are some things to think about here and some responses would be a good balance. I just think, at certain times, there is a good word to be said about the rights of the living, their futures and in Stormy's case her child.
Cat.
Cat- I don't think you have offended anyone here, you haven't offended me. I wish I could tell my sis that I was no longer helping with dad. You don't know how bad I just want to quit going over there and seeing him. But i know sis already feels abandon by our brother, hell i feel abandon by him. And if i told her i was no longer helping with dad i know she would feel the same way towards me. I am going over there to dads everyday for HER not for him. She would be pissed at me for saying that cause she thinks i should be staying for dad. But i am not. I think back at my life 2 1/2 years ago and how different it is now compared to then. Not just the caregiving part but the relationships with my sister,brother and my dad. I have resentment towards all of them now that i didn't have 2 1/2 years ago. Resentment towards my brother for not helping out more, and for sis not hearing my cries for help when i sat down and told her that i couldn't stay with dad the 12 hour days. She just didnt do anything, didn't try to find someone to help out until it was almost to late. I finally called her crying telling her that i was scared i was going to hurt myself or dad and then a light finally went off in her head like shit i need to find someone to take care of dad. She let it go on for three more months before i told her this. I took a week off of caregiving and we got a lady in helping us. I cried that whole week cause i felt like a failure that i could not keep doing it. I felt like i let her down. And that hurt me more than anything to just think that. And hell I'm mad at dad for not having the balls to say stormy's got a small child to think about; let's hire someone to come in and do whatever needs to be done. I would have alot more respect for him for saying that. But he would never say that cause it's all about the money. Granted we will get the money when and if he ever dies. But i would give up my share if i didn't have to go back to that house. I am just so done with them all. Hubby keeps talking about in 8 more years we can move to the mountains, hell i am ready to go now. Before you couldn't get me to move to the mountains now i am ready to pack my glad rags and just go to get away from my whole family. How sad is that? Love and hugs to all Stormyyy
Listen Stormy: The book of your life is being written. You can be the author or your sister can be the author. Or your sister and brother can be the author. Or they and your dad can be the author. The point is, it's your life so don't let others write the chapters for you.l
I know you love your sister, but she is making choices for you and Conner. She doesn't have that right. If the choices she makes for you are not to your liking and deprive you of the life you want, you really should say NO. No one should make your decisions except you.
Truthfully, Stormy, as I see it: If this whole house of cards came down, your sister would find a way to survive and your dad would get the treatment he needs. Your sis has working skills and she might find that life is better instead of worse. She could start over, get some help with her husband's care and move on to a real life and quite hanging on to the potential money. It's not your responsibility to live her life for her. Not going to say anymore....at least for a few days.
Love you, Cat
So if you can't do anything about it, and I DO understand the situation you are in... then maybe we can help you to accept things as they are.... you are wearing yourself out resenting something that can't be changed.... you CAN make a stand about getting some paid help in there, that is a compromise you are willing to make.... I understand your loyalty to your sister, tho ya'lls' relationship has suffered because of a choice SHE made.... I get it that you don't want to abondon her, but I am going to suggest again, that you get some counseling to help you understand the sacrifices you are making, and how to accept them or make some changes... we are frustrated FOR you, not with you.... it's easy for us to set here and tell you how to do things, but we aren't walking in your shoes... we aren't in your family dynamics....
And it's easy for you to see what your brothers choices are as 'abondonment', but there is a possiblity he is doing what you wish you were doing... he simply made different choices and is being labeled as something possibly he's not... maybe he's more clear that this is your sister's choice... her commintment, and she had no right to volunteer you and your brother for HER choice... you are making the best of a bad situation.... and I applaud you for that....but I can also understand your brothers position too... I chose NOT to do as my sister THOUGHT I should and was ,and still am being made out to be the bad guy.....That is the consequences I am willing to pay to not be manipulated and badgered and guilted into doing something I was not going to do.... and there always has to be one family member to be 'blamed'.... well kudos to your brother... I think you are not so angry that he isn't doing his part, as you are that he was able to make a different choice and stand by it.....
I am just trying to give you a different perspective on how people choose to do things.... I also think so much of your anger is at yourself for not being able to tell your sister that you personally will pay to have someone come in, because you are loosing your mind over all this....
I know you miss your mom more than words can express, you are probably a little mad at her to for not being around to help take this burden off of you.... and you keep coming here and telling us how you feel... it's not good to stuff it and you know it, so I am very proud of you for your honesty and will also point out how much you've grown since you first started posting... it is so hard for you to see any progress because of all the negative feelings you have.... but I AM proud of you... this is your journey, and we can be here to support you, to encourge you to get some professional help with this... but understand also that we care about you and are throwing out ideas for you to get out of the mess you are in... and at some point you will have to choose YOU...... and deal with all the damned guilt and all the other crap sisters can dish out.... but if you had some counseling, you would better be able to deal with it... so we will continure to honor you, and your situation, but we will also continue to encourge you to do something for yourself... not just Conner, but for Stormy.....just some things for you to think about... because nothing changes if nothing changes... you do have the power to figure out some compromise here that won't leave you feeling guilty for abondoning your sister....which you really aren't doing... but she has you convinced that is the word that has the most power to keep you stuck....your sister never had kids... she has no idea how to be empathetic to your need to be with your child... she is who your dad wanted her to be... well, Stormy is a different person... with diffirent needs and goals in her life.... but you have to figure that out for yourself... we have all been in situations similar to yours, if not caregiving , then other life lessons.... where we had to make a choice..... because when it's all said and done... if you aren't going to have feelings of gratitude, of good self esteem, of pride that you stuck with it, then you are doing it for the wrong reasons.... that's all we are trying to say.... and it is going to take courage for this to change... you have that courage, you just don't know that you do... courage is simple feeling fear and doing the right thing for the right reasons anyway....sorry if this doesn't make sense to us that you will end up hating yourself to keep your sister happy.... that's what we see and hear... and there is no pressure from us to do it different and granted you did NOT ask for feedback... but if we didn't care, we wouldn't bother.... so some things for you to think about... you don't have to take any action... just think about it.....I hope you know you are loved and we do honor what has life has handed you.... and we want you to be happy also... but you are the only one that can get you out of this with your head held high... love and hugs to you Stormygirl..... we do love ya...
i take care of both my parents but my dad is mobile and drives and cooks . my mother hasnt walked more than a couple of steps, to use her bedside commode, in the last 3yrs or more . i myself have major spine and nerve damage and take a host of pain meds . some days r better than others .i read a lot and that has been my form of escapism my entire life . i also listen to music and dance by myself . my son calls me an old hippie . sometimes when he's home we watch dvd's he bought and he has a wicked sense of humor, so we laugh a lot . i have a couple of good friends and they come over and hang out with me .also my sons friends r in and out of the house, so there is constant interaction .
on bad days, esp when ive been up all nite and my legs and back r killing me and i have to keep doing what i have to do, i get blue . im bi polar too, so sometimes i feel like screaming but that wont get me any where . so i hole up in my room, listen to sad music and feel sorry for myself , but reality is just outside my door, so i have to clean up, put on some perfume and lipstick and tell myself im the most awesome person, grit my teeth and get back to the world of the living .
i hope this is helpful . it was cathartic for me . thankyou .
This whole caregiving things sucks sometimes... but it is what it is.... so we do it, we laugh, we cry, we bitch, we complain, and sometimes we dance.... you have many pesonal issues, so thanks for sharing how you 'do it anyway'... sorry you hurt so bad... makes it even harder...
Hope you come back and visit, I feel a bright light shining off of you, we need that... and welcome..... hugs across the miles to you....
Today I got up to use the bathroom before G-Pa got back in there (there is only one BR here) and I guess that shot my resolve! I forgot to put my flip-flops on and darn if I didn't step in a lump of poop he left on the rug!!! I am thoroughly discgusted now. That's it! I'm out of here. Let the step-son deal with it ALL!
I did NOT clean it up this time like I used to without saying a word to the old guy. I DID however scrub my foot, :-P thought I was gonna hurl. This guy needs to be in a home somewhere or if he wants to, he can just live in his own filth.
I tried to talk to my husband over the week-end and he will not talk to me about ANYTHING important to me, nothing! Looks like the marriage is over as well. I kept trying to give it another chance. But I feel nothing for my husband but anger. I still can't believe he'd rather pay a professional to talk to me than talk to me himself.
So, that's it 43 years of hell for nothing! Time to check into financials so I find out what my rights are.
Thanks again for being here. You all are great. Hope your week turns out better than mine. :-(
Cara
Ladee- You know the other day i looked up a caregiver's support group and when it was being held. It's the first thursday in the month. I still am keeping it in mind. I think one day I will probably have to go to one to keep my sanity. Not sure how one of those things work cause i have never been to one before. I don't know if it is something that is a one on one thing or with a bunch of other people. I know i would be more comfortable with a one on one type session. Then i think i would feel like i could just let it all come flying out of me. If it is a group thing then i would feel like holding back on my feelings. Lord, if i went to one of those sessions i probably would never shut up and they would have to kick me outta there and i probably would still be talking while they were kicking me out!!! And the thing about brother dear. I do wish that it was me not having to deal with all this stuff with dad. He is doing exactly what i wish i was doing. Just having no part in the caregiving. But i know how sis talks about him and him not doing his part and when she vents to me about him i am thinking, yes i wish it was me instead of him. Then i'm sure she would be talking shit about me. And how everyone has abandoned dad. And all that he has done for us all. And all the long hours he worked to provide for us. Yes, he did work long hours. But dad worked long hours cause he wanted to. He was a workaholic up until he got sick. And when we all turned 16 we all worked long hours too, 12 hour days if not in school. This was at our family grocery business. So yes he has provided well for us but in the end you know what we are going to have to show for it, is a lump of money. Money is alot but it's not everything. And i would not trade all the money in the world for the relationship i had with my mom. It meant that much more to me. Dad i think thought that if he had enough money then maybe he could buy our love hell i don't know. I have just always felt like he cared more about the almighty dollar than he has us kids. Thanks Ladee for understanding my feelings and for being by my side and caring enough to give me advice, feedback and pushing me to get some type of support that i feel i will eventually have to seek out. I feel closer to you girls than i do my own sister right now. I love you!
Zannie- I never thought that when dad got sick that this would be going on for years that thought just never entered my brain. Maybe a few weeks. If i had known beforehand i probably would have took off running saying hell NOOOOOOOOO!!! If someone would have told me we would be doing this for years. We were so blindsided. We just had no idea that it would come to all of this. Well i guess i better go so i can go to dads and start another lovely day. Thank you for your response and advice Zannie. Love and hugs to you all Stormyyy
Some of you started this journey with guilt or duty, just like I did. Stormy, Book, many others...I don't know how to do this in a healthy way. I only know how to keep at it and try not to fall apart. I think about the end of this, because the middle is just too depressing. I don't know how so many of you have been at this for years. It's been 11 months for me and I feel like we take two steps back for every step forward with their health.
My heart breaks for each and every one of you/us who is being used, abused, and used up. The tears I cry are not only for me, they are for all of us. Hold tight, my friends, because together we are stronger than we are apart. Your joys are my joys, and your sorrows are my sorrows. Somehow, we are all in this together. And that alone makes it more bearable for me.
And I know you would never say this, but I will, how absolutely unfair that mom is the one that got sick and now she's fine, well, sort of, and your dad, whom you love and cherish is the sick one... and how do you look him in the eye... you just do it, and you let the love show, not the powerlessness,not the uglyness of it all, but the love, the respect you have for your dad.... you don't feel sorry for him, he has his dignity, wetting pants is not the end all of pride.... you share with him this is part of it.... only a part, and that WHO he is has nothing to do with what is happening to him..... ya'll stay focused on the man, not the disease.... and do not let the embarrasment of it be more powerful than your love for him.... am sending you a Texas sized Kleenex, and lots of hugs and angels.... love ya girl, and wish I was there....
Much love, sisters....
Beck, I am sorry for you too that it all seems too large... it seems to go in cycles... this time of year, we are ready for change, at least change in seasons, it is still so hot here, I know this is contributing to my fatigue....
And yes Beck, every one has their hands full, such is the life of a caregiver, we can only hear about others suffering and then we get burned out from that too... but that's where we get out of ourself and be there for others.... the energy comes from somewhere..... we feel futile sending hugs out in cyberspace, but it does count and it does matter... so for those of you with the energy to continue, then keep on keepin on... we don't have to 'take on' everyones problems, just simply be there for them... that's what this sight is about... being supportive... sending hugs... it's simple, it only takes a few seconds... and we DO have that to give each other.... love to you all.
Bookworm-Much love and hugs to a wondeful caregiver! Rest, and know we are thinking of you.
I read something yesterday, went sort of like this-
She who cries tears is not without courage.
Courage is wiping away the tears and picking up the sword to fight again.
Thank you all for being my stength. Wishing everyone courage and a bit of peace today.
As I was reading this site on Monday, it hit me that I'm a Hypocrite. Here I am giving advice to people and I'm not even following my advice. I know what I want, I know that if I do what I want - my conscience and Bible training will condemn me. I fear if I walk out, I don't know who me is. And I'm just soooo tired. My thoughts is like running in circles. And I no longer found this site as encouragement but as condemnation. I'm a hypocrite...
I'm still weepy but I needed to come on because obviously you all needed to hear that I'm all right. I am. I'm just all broken up inside but I'm not broken beyond repair. I tried reading some posts and I felt sadness and not wanting to read it. I'm sorry...if avoiding this site is required to put me back to pieces, then I will do so. I've aggressively done so - just as I've been doing all my life in order to survive.
I know what needs to be done. I will do it when I'm ready. It's also my fault that this has happened. I opened myself to you all. I made myself vulnerable. I did something here that I've never shown to my family - my inner me. I need to rebuild my wall. I KNOW that this is wrong but I need to do this because I'm being pulled in so many directions inside. Fortunately, I always check my inner side - I'm Not Suicidal. This - I truly believe is because you all have helped me to be stronger to handle the stress of life. I'm sorry...I'm sooooo tired. I'm logging out now. My ice cream is calling me.
Cat, I'm sorry for worrying you. When I posted to Ladee, I just cried and cried. That little paragraph tooke me 1-1/2 hour to write! I just wasn't up to repeating it again....Sorry, Cat.