What to do when you're at the breaking point?
I don't even know where to begin. I guess I'm just looking for support. I'm 36. I was raised by my grandparents in less than ideal conditions most of the time. My mother was schizophrenic and we lost her ten years ago. My aunt is also schizophrenic. My grandfather died five years ago (renal failure) and my own father is pretty much not in the picture.
Since my grandfather died, I've been trying to do what I can to make sure my family has groceries, necessities, etc. Some outings when we can. In October, my grandmother became very ill and was placed in a nursing facility. After what I can only describe as bullying from her and a close family friend, I explored other options for care and found what's called "Community Waiver". It's a Medicaid sponsored program with provides certain care in the home without the worry of losing income, as most people do when placed in a long term care nursing facility.
During the time I was researching options and doing the best I could to coordinate medical care, hospital visits, nursing home meetings, etc., I was also trying to find assistance for my aunt. She's schizophrenic and has increasingly relied on my grandmother's income for her day to day needs. My grandmother receives social security and a small annuity from my deceased grandfather's retirement; my aunt receives SSI.
Some of the problem is that my aunt has no concept of...anything. I have found a local program called ACT which helps people like her, but things are still very difficult. There's never an end to what she needs. I can take her to the store on a Sunday and Monday she's calling me telling me she's overdrawn her account (I've paid for whatever she needs on Sunday, by the way). Or on Tuesday she's out of cigarettes, or Wednesday she's out of ...whatever. It never ends. She can't ration money, food, or time.
My poor grandmother is quite passive aggressive and refuses to reason. Most would say, well, it's because she is elderly...but she's been like this my entire life. She raised me with the same passive-aggressive, guilt ridden mindset.
I don't know where I'm going with this entry...there's too much to describe in one entry. I guess where I'm going with all of this is selfish. Very selfish. I feel trapped. I feel isolated. I'm blessed to have my partner and his family but there are no other friends. I am the power of attorney for my grandmother, and I handle everything I can from a facilitative aspect, I guess. I don't bathe or help her with needs for toileting or whatever, but the constant stress of someone always needing something is getting to me. I can't do the things for myself that I was doing just 6 months ago. I can't devote the time I need to my work or to myself. And I'm getting resentful and very angry. Angry at my aunt for never being able to do anything right...angry with her for not helping with her mother. Angry with my grandmother for not having prepared anything for this point in her life. Angry because I'm the only one who can do anything, and people are constantly calling me - all hours of the day and night-even the people who are caring for her. I can't handle it very well anymore. Some people tell me to cut ties with them. But I can't do that. I sometimes wish I could, and more than once have felt so angry with things, or so trapped, that I have convinced myself that I have cut them off. But I know if I do, no one else will be there to help them.
Does anyone else feel like this? Is it normal to be this ravenously angry all the time? Depression and rage are consuming me. I constantly am having horrible thoughts about myself, and how terrible of a person I am. I'm even having flashbacks to remembering how I was constantly reminded of how much a burden I was when I was a kid.
More and more I find the words "I hate her" (meaning either grandmother or aunt) slipping from my lips. I don't them...I don't think. But I definitely hate something. I feel hate. I feel intense hate for something. Sometimes I think it 's for myself.
I don't know how to get these images and this rage and this depression to go away. I guess it would help to know if anyone else feels this, too. Please forgive me for this being so disjointed and ill-thought out. I don't really know much about what else to say.
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And...Ashlynne, I know what you mean about smiling and throwing back. Also, kinda. Doctors, nurses, etc always make me feel like caca when I've explained that until all of this went down back in October, she lived alone. She was fine then-self sufficient, just had cataracts removed, and hoped to drive again. But I got more than my share of guffaws and unkind words because of it.
I'm not glad there are people who have experienced the trauma of caregiving but I'm so glad there are people who understand what I mean by striving to find a balance between self preservation and having a modicum of responsibility. It's a fine line. I'm glad there are people here who understand the need for boundaries, and understand the frustration and have already run through the guilt thing. Again, not glad that anyone goes through these emotions...just glad I'm not alone. Glad I'm not a monster after all. Because I surely thought I was.
When I was in college, I dropped out because my schizo mother was running wild. I was working three jobs and then she went off her rocker and I quit school. Ten years ago this year she died, but not after I cared for her day after day-going to stores, pleading with doctors and social service agencies to help her. She would call me at 2 AM and tell me she was out of diapers-could I bring some. And cigarettes. And feeling sorry for her, and guilty for needing rest for my job, I went. I'd go. I'd take her wherever. And sometimes she'd be so sick off her meds she didn't realize she hadn't aborted me.
Grandfather was on dialysis for 17 years, and two years before the end, I'd routinely be called to help him around the house, bring food, cook, whatever.
The point I make in sharing that is just that all my life I've grown up knowing that my mom and aunt were crazy and I'd be the only one to take care of , well, everyone. I had that realization before I was in second grade. I felt like if I did well in school I'd be able to take care of all of them. Doing well in school DID NOT prepare me for the years of caregiving I've endured. I know my family needed / needs me but I've often felt like I'm a vessel instead of a person. I don't know how to explain it. It's been a weird existence...especially when I learned in my twenties and thirties that other families TYPICALLY don't operate this way. No family is perfect, but I've not found any like mine.
Since then (November 2012) she's broken a hip, had another stroke and her dementia is severe. After more than a year of almost daily screaming phone tantrums I recently changed my phone number and made it unpublished. I told her my phone had been playing up, I rarely use it, was getting rid of it and just using cell but no point in her having the number as I only have it on when I want to use it. She believed it. She's at the stage now where she believes fibs.
When you're pushed to the breaking point you have to do what you have to do.
I don't like tornadoes at all. We had the huge April 27 monster heading at us two years back. Tornadoes are too short and violent. I do have to admit, however, that I was thrilled looking in the skies of west Birmingham that day. The tornado was so large that there was rotation in the clouds that looked like a small hurricane. Man! was that a sight.
Apparently anger is normal dealing with elderly family that constantly needs help. Especially if youre the main caregiver. theres a term called " caregivers burnout" maybe look it up you may relate. Please take good care of yourself
I love storm chasing. I'm more of an armchair chaser, but I love storms and weather phenomena. I can spend hours glued to a radar and the NOAA website just trying to figure out what's happening. From a safe distance, I'd love to see a 'nader (can you tell I'm from the South). But I definitely will not risk life or limb to do it.
Believe it or not pstegman, our parish (LA's version of counties) social services won't actively get involved with either of my family member's cases. Maybe it's because I exist in the picture at all. Aunt has texted me three times today and I've not responded to one. Finally she called and apologized for standing me up yesterday. I told her I hadn't responded because I was entirely too busy taking care of her mother, and pretty much ended the call.
Your aunt belongs in a sheltered residence and should be on Medicaid and SSI.
The county DSS should be handling her case. I agree that you should not give her money or try to solve her banking problems. She is obviously not able to handle money and should be in a group home for the mentally disabled. My sister lives in one and it works very well for her.
the storm chasing? let me help you out here; " YOURE GOING THE WRONG DIRECTION " ( lol )
I also told my grandmother that things are NOT going according to the plan. I've made a resolution. If we don't get this waiver plan set up by March 1, she absolutely cannot just lay around in bed all the time with minimal care. If we're where we are now by the beginning of next month, I cannot handle it anymore, and we will have to explore other long term care options. The church is going to help pay for sitters during the interim but it's still not fair for me to have moved her back home because it's what she wants, but is not able to care for herself, expecting others to foot the bill. It's selfish and it leaves a bad taste in my mouth. I voiced my concerns to the church and they said well...we want to help! She's a big part of our lives! So big that I guess they never visit but whatever.
Tomorrow...God willing...I'm taking my life back. I'm going to the gym and taking that kickboxing class I've been dying to try. If not that, I'm going to the local NAMI meeting (for families of the mentally ill) to try and get some support and encouragement, then I'm hitting my best frenemy-the elliptical. And Tuesday, by heck or high water I'm getting re-certified by NOAA for my storm chasing hobbies. I'm done with the bullcrapp. I'm done. I'm not myself anymore. And I'm sick to death of it. I've got a great man and a tolerant, stable job and I'm stronger than I've ever been. I love them but not at the detriment to myself. Not anymore.
Amen. Make it happen.
More and more I find the words "I hate her" (meaning either grandmother or aunt) slipping from my lips. I don't them...I don't think. But I definitely hate something. I feel hate. I feel intense hate for something. Sometimes I think it 's for myself.
I don't know how to get these images and this rage and this depression to go away. I guess it would help to know if anyone else feels this, too. Please forgive me for this being so disjointed and ill-thought out. I don't really know much about what else to say."
To answer your first two questions, yes and yes. I was about your age when I started to care for my mom.
Get the hell out of dodge for the reasons people have already stated. Had I known back in the day what I was setting myself up for I'd have run for the hills. If you have to, get the state involved and abandon them. No, you're not really abandoning them. It just means that you are no longer willing to be solely responsible for them. Then the state places them where they need to be, where they'll get the kind of care they need with professionals around the clock, care that's killing YOU to provide on your own. When people say you can die in the care taker roll from stress it's reality, not exaggeration.
Don't allow anyone to bully you. Do what you have to do to save yourself if you're at the breaking point. Nobody should have to live with stress and anger that's so high you feel that life has become something to be endured and looked upon with dread.
*hugs* You take care of YOU. Nobody else is going to.
I told my grandmother that I was done with my aunt. Done. I'm not doing (*$%! anymore. I'm not going to let her starve but I'm done with the 100 grocery store visits to stock her up. I'm done finding shoes for her. I'm done making plans. She will not meet anyone halfway and I know she knows some better than that, regardless of her illness.
I also told my grandmother that things are NOT going according to the plan. I've made a resolution. If we don't get this waiver plan set up by March 1, she absolutely cannot just lay around in bed all the time with minimal care. If we're where we are now by the beginning of next month, I cannot handle it anymore, and we will have to explore other long term care options. The church is going to help pay for sitters during the interim but it's still not fair for me to have moved her back home because it's what she wants, but is not able to care for herself, expecting others to foot the bill. It's selfish and it leaves a bad taste in my mouth. I voiced my concerns to the church and they said well...we want to help! She's a big part of our lives! So big that I guess they never visit but whatever.
Tomorrow...God willing...I'm taking my life back. I'm going to the gym and taking that kickboxing class I've been dying to try. If not that, I'm going to the local NAMI meeting (for families of the mentally ill) to try and get some support and encouragement, then I'm hitting my best frenemy-the elliptical. And Tuesday, by heck or high water I'm getting re-certified by NOAA for my storm chasing hobbies. I'm done with the bullcrapp. I'm done. I'm not myself anymore. And I'm sick to death of it. I've got a great man and a tolerant, stable job and I'm stronger than I've ever been. I love them but not at the detriment to myself. Not anymore.
(at least that is the plan...mouse mouse squeak squeak )
Stop taking calls from the caregiver. I had to do that. Tell them they cannot call you unless it is a medical emergency and 911 has already been contacted -- if it is trouble handling your grandmother than they can call their supv. Grandma hopefully is paying for her care and they should be able to manage. If not, find an agency who can. Otherwise these calls will never stop. I asked them for a written care report once per wk at the end of the week and for them to email it to me.
As for the aunt. You've done what you can. She has options. If she can't afford to live on $700/mo, then she needs to move somewhere that is affordable or get a roommate. Don't enable her by lending money, covering bad checks, unpaid bills etc any longer. That does not help her be more independent. I know you are afraid she'll be homeless, but you can't manage all this care for everyone and it isn't right to give up your life unless this is what you want.
Stop the madness. Make a plan. Consult with professionals, and live the life you deserve.
First of all, regarding physical activity. I am an avid gym goer. Or, was. Over the past two years I lost nearly 70 pounds. I sincerely try to keep it up and get my butt to the gym, but there are some days when the emotional and mental drain is literally sucking the life out of my body, and I can't get there. I can hardly walk to my car to leave my job (my job, who has been more than lenient with all of the time I've had to take over the past four months). THAT drain I have no idea how to cope with. I always have imagined myself a warrior, slashing problems with a trusty sword. The warrior is fatigued.
Regarding the shopping trips....I have whittled most of them away to nothing. And I don't feel bad about it. These days, I don't hardly her anywhere. I simply have shut down from her. I can't handle her idiocy. The ACT program that I mentioned is designed to help people do normal day to day things, like taking them to the store, bringing counselors, doctors to the home, etc. Now she's abusing that, too. I understand that it's damn impossible to live on 700 a month, and that somehow, her income will always have to be supplemented to a degree. I try to remind myself, could I live on 700 a month? And 60 in food assistance? But the issue is that if I don't take her to the store or whatever, she just goes and writes hot checks. Takes out payday loans. We can't pay for that nonsense, and I refuse to pay off her payday loans again. That's why I brought in the ACT team-to try to help teach her coping skills, life mechanisms. It was hard finding this program, and a slap in the face when she called them to advise she no longer needed their services due to the fact that her mother had been released from the nursing home. It was like everything that I tried so hard to get going for her to improve her life meant nothing. They want to get her into a group home or something but she won't do it. I can't force her. She is way more competent than she wants others to think; she refuses to help herself. That's the most frustrating thing of all.
Regarding my grandmother at home. What's really aggravating is that the Waiver program that I mentioned earlier...I don't know if I mentioned the fact that once I was told we were approved, and I set everything in motion for her to leave the nursing facility, THEN they told me it would be at least mid February before the program would start. So here it is, post-mid-February, and the sitting services have not started. No one told me that I'd need to complete a Medicaid app for her, either. So I scrambled and did that and now am just waiting.
When she first got home, she was tooling around in her wheelchair, fixing food, getting to toilet by herself. I was elated. She was doing things for herself and honestly didn't need round the clock anything. She was relatively independent again, and it was wonderful to see that light in her eyes re-ignite. It was like she was saying, I CAN DO THIS!, after months of being treated like a baby. But last week she got sick with another UTI again and I've had to hire people to stay with her while I'm at work, to cover the gap between the time her night sitter (friend of family staying at the home) leaves for her day job and comes home. I have no freaking idea how we're going to pay for this.
I can't even describe how much waffling I've done-back and forth-to what is best for her. At first, in December, I was like, well, she really should stay in a facility because she'll be taken care of and I don't have to worry about sitters and what not. But then, I knew her income would disappear, and I honestly was afraid for the house bills and money issues that I knew I couldn't pay for. My grandmother and the lady who sits with her at night badgered and bullied me. My grandmother kept saying, "If I want to use all of my money, every penny, to my care, I have that right." Cyndi (night carer) kept saying, " SHE DOESN'T DESERVE TO LOSE EVERYTHING!" And the conditions at this particular nursing home continued to decline, so I explored other options, figuring that because she's been on the planet 82 years, she at least deserved to try to go home. I found the waiver, applied, was approved (after very narrowly being guiled by a hospice nurse to utilize their services. Once I learned more things about hospice, it was harrowing). So now we're trying. I don't expect it to last long.
I'm ready to throw in the towel. Yes, they see the changes in me. They see the ten pounds I've re-gained since all of this started. I've thought about the darker side, and what would happen if I did end my life. I'm not going to do that, but I've allowed my mind to wander. They'd be screwed. And a sick part of me is damn near gleeful at the thought of it. "Serves them right" mentality. But I'd never to that to Will, the love of my life. He is so supportive, and does every little thing he can think of to make me happy. That hole in the middle of me aches, though. Nothing changes that.
One of the hardest things I'm dealing with that's dragging me down is not only the suffocating responsibility, but the fact that when I turned 36 a month ago, it was like a sucker punch. I'm not getting any younger. I don't have kids of my own. How could I do that with this situation? Are the last years of my "youth" going to be consumed with this bullcrapp? And with all of the disheartening things I've learned about long term care and elder issues, and how most lose everything they have anyway, what the hell am I working so hard for, long term? I've lost sight of my goals and found that I'm despairing. Half of my life is gone. The middle of it is consumed with all of ... this. And the only way I see an out is death. Not mine, but hers. I don't want her to die, of course...at least I hope I don't. Some days I don't know. I'm ready for it to be over a lot of the time.
Thank you for all of the responses and encouragement. I really, really appreciate it. I hate to sound so negative and neurotic and am trying not to sound victimized-I've sought what resources are available to me here and keep waiting for the cavalry to arrive. Besides Will, there's no other support. I've been thinking of getting myself into counseling but that'll be yet another tick mark on my schedule. I think I need it though.
Thank you all so very, very much. I'm open to private messages...just not sure how to use them yet. Just found this site last night.
You mention a good partner and his family. That is a start. Listen to what they have to say.
Why have you taken on the responsibility for your aun?. Stop enabling her behaviour. Why can't she go to the store herself? Stop paying for things she needs. She is using both you and her mother. Schophrenia is a horrible mental illness but it can be well controled with modern medications. The catch is that the patient has to take the medications. If she truly does not have enough income and I do believe she may not with only SSI comming in, focus on having her apply for everything that is available. She and your grandmother are not your dependants. Get her off your payrole. As has been said set bounderies.Tell them the rules up front ( discuss this with your partner and his parents) I bet you don't share half the demands with them. Tell your aunt, grandmother and her caregivers, that they can not call you outside of certain hours If either has a medical emergency they know how to reach 911. Have caller ID and don't answer the phone. Your grandmother's caregivers are paid to look after her you are not.
You do not owe either of these women anything so stop guilting yourself into thinking you do. You have gone way and beyond finding ways to help them and all they do in return is manipulate you and ruin your life. Grandma may have dementis now and can not help some of her actions but she has always treated you as an unwanted burden. She may truly feel that way and she is entiled to those feelings because she may not have had a choice about raising a grandchild but that does not and never has entitled her to try and extract recompence from you in your adulthood. Do not keep grandma in her current living arrangement simply because you want to keep her income available to subsidize your Aunt. Stand up to the bullies, lean on your partner and family for backup. They can see the changes in you and are probably worried. These kinds of actions are never easy but harming yourself is not a good way out. When you find yourself in a really dark place seek out a suicide prevention hot line and talk, they have heard it all and are trained to help. Think about what would happen to these two women if you did end your life. When you come up with the answers ask yourself if these should be the actions taken now for their care. You are a very good and responsible person and have more than repaid your grandmother for your crappy upbringing. Now do what's best for the people in your life who do love you. Blessings
The good captain above said the magic word: Boundaries.
Your grandmother and your aunt should not be controlling your life and I'll second the opinion that you combine grocery store outings into one trip for both of them. Tell your aunt that you will be going to store only once a week. If she's on the ball enough to know when she's out of things and then call you to go to the store yet again then she's on the ball enough to plan ahead of time for what she'll be needing for the week. Set this boundary down and don't deviate from it.
In addition, if you have taken care of your grandmother and aunt for the day, everything for that day is done, then be done. If they keep calling you don't take the calls. Be wary of "emergencies". Take the evening for yourself, not to put out fires for your grandma and aunt.
Caring for one person is demanding enough but caring for two people is next to impossible as you have discovered. You are not a horrible, selfish person. You're stretched to your limit and if you break then no one gets cared for. You must, MUST care for yourself. That suggestion is not some tootie-fruity new age greeting card philosophy, it is essential when it comes to caregiving. If you can't take care of yourself you will be of no use to anyone else. Already you're angry and resentful and depressed. That won't get any better until you take back your life from these two women. They don't have to understand and they don't have to agree but you have to have time to yourself and it's not selfish to take it. And when I say time I mean take a nap or read a book, go to lunch with a friend or watch a movie. I don't mean getting caught up on whatever it is that needs to be done for your grandmother and aunt.
You deserve a life. Can you increase your grandmother's hours with the caregivers? As for the aunt, just because she has schizophrenia doesn't mean that she doesn't understand what's going on around her and I think she's taking advantage of you based on what you wrote. But you know what they say, people can't take advantage of us without our permission. So draw the line with the aunt.
You don't have to cut them off but you do need to make it clear to them what you will and will not do, what you will and will not tolerate. Running to the store everyday should be the first thing to go.
we maybe should have a few private correspondances..
aleece, i think jesse is suggesting that you set some boundries with these bipolar ho's before they drag you under -- and i think she also implied getting some morbid to wry humor in your life. humor aint just lying around, you have to create it. its mans oldest and most reliable coping mechanism, ask any miserable soldier who ever served.
Is your aunt in a facility for schizophrenics who are not functioning well? Some cities have "halfway houses" for schizophrenics that provide certain services, including bus rides to meet their outside needs. This seems like it would be ideal for your aunt.
About your anger -- I know it can eat you up inside like a cancer. It can push the blood pressure up and keep you awake at night. I know you know these things already. You have to find some way to manage it. Sometimes it helps to chop wood or do physical things. Sometimes it helps to have a secret stress reliever -- an action you do to defuse the stress you feel. Some people use things like a rubber band on their wrist to pop. Some people go on walks or runs. Some people use silly tricks that make them feel better. If you think on it, something may occur to you that will help you feel better.
It sounds like you could use some time away so you could get back to your own life for a while. I know that is easier said than done. People may have some idea how you can do this. Living with rage is not good and eats us up.