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Hi Everyone. I hope you all had a nice Christmas and New Years. Hopefully 2011 will be a better year for us all, including those we care for. I feel myself getting more and more depressed and am feeling very hopeless regarding the ongoing situation of caring for two ill, older people. I'm feeling exhausted physically and mentally. I'm trying to keep a smile on my face in front of my mom and s-dad, but it's becomeing increasingly hard. I've stopped trying to keep up with all of the cleaning, laundry, etc... I still do what I can plus more, but I can't keep up with all that I was doing before anymore. My mom seems distant to me now. I can tell she's disappointed that I'm not doing as much as I was for them. I'm not breaking my back with cleaning up after them as much anymore. I'm not vacuuming b/c I just can't! I can't get a place of my own and have no place at all to go for 'respit' (?sp)... I'm to the point of feeling weak myself and have a lot of pain b/c of my own health issues. Yet my 'issues' don't seem to matter b/c they need help if they want to stay in their home. I'm sorry for rambling here. I just don't know how to get out of the rut I've fallen into. Other than the support I get from my online friends, I have no one else at all to talk to except for the councelor I see for one hour a week.

If I may ask, how do you deal with the depressive atmosphere when you're in the midst of being the caregiver, laundry attendant, 'go for'... grocery shopping engineer, weight lifter, councelor, etc... ???

Any and all replies would be very welcomed!!! I know that you're all going through hard times with this caregiving thing too. It's not rewarding, and (for me anyway), it can suck the life right out of you. I hope to hear from y'all.

Glad to be here,
Kathy K.

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AH. More evidence that "the easy problems have all been solved already." And evidence that the elders you are caring for really cannot help themselves and should not be calling all the shots.
Yes, its their house, and as many of their preferences as possible should be respected - but the key words are "as possible." You cannot carry out or live with every unreasonable expectation they may have. Unfortunately, that's exactly what cognitive delcine entails - a loss of reasoning ability and therfore a loss of reasonableness. The affected person can't be morally blamed for being unreasonable and imperceptive, and by the same token, their unreasonableness and apparent uncaring should not be taken as personally either. It is not easy to accept; I know when I first realized my mother did not make sense, and was not ever going to make sense again in some very important ways, it broke my heart. And even though I realized it, I still fell into the trap of just really hurting and geting upset over some of the things she said and did. It even hurt to suddenly realize well after the fact that she had, for the first time ever, forgotten my birthday, though it was obviously because she lost track of dates and times.

So, FIRST off, please try to tell yourself there is no guilt for trying to take care of yourself. Taking care of ourselves as well as we can is truly our first obligation as human beings and as caregivers. Sure, sacrifices in that department may need to be made, but basically completely ruining your own health while helping someone else makes no more sense than a rescue worker being careless of their own safety and ending up becoming another victim. Maybe you could find out if there are free clnics where you can get medical help if you don't have coverage, and seriously consider medication for menopause, e.g. vivelle-dot and progresterone cream, which may not be hopelessly expensive and often startlingly reduces anxiety and depression. There is actually some biochemical similarity between estrogen and some antidepressants. Maybe you would qualify for SSI or SSDI and receive some support there, including having Medicaid at least, or maybe you already do and I forgot or did not notice.

There is also no guilt for giving up trying to do things you cannot do. If it requires staying awake 24-7 to care for someone, then one person simply cannot do it for more than a day or two. It should not even be attempted. Where I work, we simply do not send a child home who requires 24 hour care with fewer than two trained caregivers. You situation may be a little less extreme or clear cut than that, though not by much!

The next question is what you can and can't get away with in terms of making the house more liveable *for you.* What will they actually stop you from doing, and what will they just accept or disregard once its done? (How much mileage can you get by using the "ask for forgiveness, not for permission" strategy?) If the answer is zero, we will all pray for your strength and health and ability to get short breaks from it that sustain you enough to keep going and wait it out. To prepare for that - and I do not mean to seem heartless, but the inevitable in terms of serious illness or death will happen someday - do you know where the "important papers" are and what they say?

And then, whatver else is said or done, try not to be hard on yourself for not negotiating all this more skillfully, for not making different decisions, etc. etc. You've done the best you could with what you saw, knew, and understood about the whole situation. It is a first time for all of us, when a parent or parents begin to suffer from complications of aging. When our parents did this for their parents, a lot of things were diferent, and most of them just didn't talk about it openly the way we do now, and sadly, won't! All the info I ever got about my grandparents declining years from Mom, beyond what I remembered and was not shielded from myself, was that she felt guilty because she didn't "make sure they got enough to eat" (?) though they most certainly did. Maybe they would tell you a little of what that experience was like for them, and maybe it would help somehow. My mom's comment made me realize at least that one thing that means a lot to her is to keep bringing her food treats and keeping the (sugarfree) candy basket in her room full for her. Its a small thing, but something I can actually do even though I can't fix much else that is wrong.

FInally, please believe me, that having an excuse to tell our own stories as we stumblingly try to help you, is helping oursleves enromously as well. Everyone who shares from their heart, as you have done, is adding to the strength and wisdom of this whole community.
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Hi Everyone. Thank you all so incredibly much for your support, suggestions and encouragement. A couple of months ago I could have walked out and stayed away, and I did. I went to live with my s-sister, who lives only 3 miles away from where I'm living now again. The s-sister has a VERY small place (1 bedroom, 1 bathroom with no door for any privacy, livingroom and kitchen. 1 bed. 1 peice of furniture in the livingroom and NO privacy). I tried to stay with her, really I did. She was nice to me at first, but she got a boyfriend (a couple of month's fresh out of prison) and I was in the way. I slept on the sofa (which I bought her!), and when her boyfriend was there and on weekends or nights when she wasn't working, she wanted the sofa, so I ended up sitting, sometimes falling asleep on the floor. This is a very old small farmhouse w/ no basement and probably cement floors under old carpet. I did all I could to make things work. I kept her place clean, did all of her dishes by hand, fed her cat, bought her groceries, etc... Still, when the ex-con was there, I got the message to leave them alone. A couple of times I sat in my car in 33 degree weather, to give them some time alone. Finally she got really irritable, started to hit my sweet dog Bailey, when he'd want to play with her cat (and Bailey is a very gentle, loving dog), and then she accused my dog of 'relieving himself' in her apartment, which he did not do! It got so bad that I had to leave. Of course, having no friends or other family left, I came back to live at "home" with my mom and s-dad. While I was gone, my hope was that they'd realize how much help they really needed and GET IT! They didn't. There frig was nearly empty. The house was a mess and un-clean. It was pityful. I'm an excellent codependent and extremely soft hearted, which is not always a good thing. I'm in menopause now and my emotions are a wreck! I find myself crying at commercials!!! Also, "guilt" hangs over me and in me like a dark, evil cloud. I think the 'guilt' is what keeps my life totally out of control and in the dark. I've tried to leave them on their own...and they wouldn't get help. I have stopped doing a lot of things that I used to do for them. I can't do all that I did, even as much I was doing just a couple of months ago. My own pain problems and depression and anxiety issues have been getting out of control. I'm so sad and am having panic attacks. I have no savings and apartments in my area are extremely expensive and won't allow dogs. I don't know how to get out of this situation I find myself in... I'm here and I'm hearing everything that every dear, sweet, loving person here has to say. I'm hungry for sanity and hope that it's not too late to find some sort of peace. My s-sister absolutely will not help me. They won't even return a phone call from their dad anymore. I pray a lot and talk to God/Jesus on a constant basis. I know we all have to go through trials and that life is not easy or fair, but.... I guess there are no "but's"... However (lol), enough already! I'm also looking at being homeless should anything happen to my mom. I'd have nowhere to go and it would literally be the last straw for me if I lost my puppy. I'm missing my real dad a lot... he was not only my dad, but my best friend. I lost him too early. I guess God needed him more.

I'm so sorry for rambling on and on about various things. I'm feeling so scattered... I thank God I found this group and all of you.

I look forward to keeping in touch and I hope I can get to the point where I might be able to help others here instead of needing the help.

Blessing's & Love,
Kathy
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You wrote:

"Both my mom and s-dad are 100% clear mentally...They see how much pain I'm in and they don't have any empathy. They want to stay in their home no matter what...My s-father is very inappropriate and verbally sexually abusive to any female that comes into the house."

Unless you can say with confidence that step-father has always been extraordinarily self-centered and sexually abusive then the above does not add up...no empathy, foolishly burning out the one person they can depend on to let them stay where they want to stay, and disinhibited enough to exhibit behavior that would otherwise be criminal in nature, most likely equals cognitive decline. Or, possibly it is just very severe and chronically untreated depression. I'll play the devil's advocate for a minute and ask you what would happen if you found a paid live-in nanny position and you were not available to be their live-in plus pay rent....wouldn't they then have to get help and get it on reasonable terms instead of running themselves and you into the ground by irrationally insisting on their terms, which make no sense? I bring this possibility up because the fact that people recognize loved ones and carry on some kind of conversation does not mean they are mentally sharp as ever; though that's what a lot of people seem to think, judgement can be very impaired before memory problems become that severe. Are you managing their finances and shopping and everything, because they really can't anymore? Try to step back and look at this again - you may be giving them too much credit and too much power, letting them run the show when it is no longer reasonable for them to do so.

When my mom's requests no longer made any sense, AND became totally impractical as well, I was blessed to already have a power of attorney in place, and was able to get her physicians to document that she had vascular dementia with delusions and was not capable of managing her own affairs. Then, with much trepidation and guilt, I managed to do what simply and absolutely had to be done (sell the house and move her to live near me) even though it went against her wishes. (This was after she threw out representatives of three different home health agencies who might have helped her do what she wanted most, which was to go home, and she ran out of money, AND she was hospitalized with delirium from a minor illness which she did not even recognize as such. The staff of the assisted living where she was had to have her taken to the ER after she started swinging at them with her purse. But she still insisted the goal was to reutrn home without anyone staying with her or looking in on her at all, just as soon as she was able to walk again...which was also not going to happen...I had rearranged furniture so she could have negotiated things from a wheelchair, and she chewed the hell out of me for even doing that.) All the while, I was worried that the neighbors, who visited and seemed to think she was really sharp and had all her marbles, would object, but in fact they were very relieved as they knew and accepted long before I did that she would not be going back home... sorry for digression, but after all this time (over a year now) it still hurts even though it is clearer and clearer it was the right thing to have done.

If their judgement really is fine and they are consciously and openly abusing you just because they can, again, you are helping no one by simply remaining there to be abused.

I am very sorry for bringing up disturbing thoughts if I have misunderstood or misinterpreted the situation. And I hope that if it does turn out that you have to step up and take a bull by the horns here, that you find the strength and support to do it. It might be that the other family members who won't go into such a toxic situation would help if ending or drastically changing it for the better became an option. I am a person of faith as well, and my Bible says that you are live in peace with others AS FAR AS POSSIBLE. This situation as you describe it would seem to have crossed the line into impossibility some time ago. I'll be suprised if your pastor's wife does not agree, especially if step dad makes a grab for her.
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Dear Kathy: Seems like you are the one person who cares enough to work your butt off for aging parents who you care very much about. But then you are but one person. You could dump the entire responsibility by letting things go to the point where there is no avenue but a nursing home or an assisted living arrangement . If that happens then you just start the count-down until their lives ending. That is just the hard facts of modern day end-of-life scenario. If that is not a satisfactory solution then you must take advantage of many home care services. These are becoming more and more available. Use them to help your parents survive in reasonably normal conditions, at home. Don't think you can do it all yourself. You can't, it is physically and emotionally impossible. Bring in the cleaning people once or twice a week. Bring in a helper when necessary for shopping, doctor visits, outings and whatever else is necessary in this most dismal part of life. The most important thing is for you to remain strong which means being physically and mentally strong. Don't feel you have to be the person to do all the many tasks necessary for their survival. You have to first and foremost take care of yourself otherwise......... . As for the costs, there is nothing more expensive and depressing than the nursing home. So keeping them at home is the very best you can do for them. It is a lot less expensive than the assisted living or nursing home. Been through all this myself and it certainly isn't an enviable situation but it is life. And yet it can be far better than this same situation might have been just a few years back. You must unburden your load on the available outside help. Most important is to take care of yourself for without you there is only the outside world of professionals who are no substitute for a caring family member.
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OH Kathy,
I made a big mistake- it was to say-
DO NOT let them make you the scapegoat
DO NOT believe that this is your fault-
My fingers were just moving too fast-
Headbanger, I agree with you- good advice!!!
sorry kathy-
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Kathy I'm sending you a hug. Personally I'd try and take control of something to give me some pleasure or security STAT!!!

If you are an acknowledged caregiver for your Mom and S-Dad then STOP paying rent. OMG they are getting your help, care, and time and you are paying them for it too. No way baby, I couldn't do that and stay sane. I'd be saving up my money for a future move if things weren't working out. I'd have a discussion with your S-sisters a little like this "I know you don't like your Dad. Somehow this has become my problem. He's your Dad and you aren't contributing. If you don't want to be involved personally, then perhaps you might think about compensating me for standing in for your responsibility towards YOUR PARENT".

If your Mom and S-dad don't believe they need your help then stop giving it. Pay your rent and take care of yourself and darling dog and let them do their own laundry if they are capable of it.

Even if you don't actually do it...consider for a moment...wouldn't it be great to say "here is my rent check, me and the dog are going out today. See you two later, hope you have a great day". Stay out for a few hours if you can doing something that is pleasurable before you go home. It is nirvana baby.

So many times I've looked into the eyes of my dogs and received the unconditional love I needed to go another day. I'm so glad you have your pom-pom to give you some canine sugar kisses.

I can identify with the anxiety and stress induced pain that you describe. Seems to me my Grandma gets much better pain control and medical care than I can get access to, that bothers me a bunch given the nature of our circumstance. She depends on me no matter how I'm feeling on any given day. My back hurts? Too bad. "Someone get me outta this bed" is what rings in my ears. It is stressful!

Stay strong Kathy! I'm still unsure about giving any advice here on the site, I'm no expert. We are in the the same boat in a different ocean as everyone is caregiving but we are all in a different but strangely similar situation. Take care and have a /hug from me.
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sounds like it is getting out of control.
it might be helpful to make some very important
decisions now.what do u need -
what do your parents need
and get your therapist to work on some specifics.
this needs some plan-
unless on some level this is working for u.
if not, maybe its time to do things differently.
this is so hard-we have to grow up and take charge of
certain parts of this time in our lives.
are things working this way?no
try to figure out what u need-and what they need-
and then at least u may feel like there is a method to the
madness-
i have to remind myself of that too-
its easy to get caught up in all the drama,the pain, the frustration.
it isnt easy- have u ever heard of the rune stones? just wondering-
take some deep breaths, u will get thru this, and gie ourself some
credit-but allow yourself to be the scapegoat-u arent to blame-
now,
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Willow, If you are renting a room from your parents, and they say that they DO NOT need anyone to 'take care' of them, then WHY are you doing so much??? If you were NOT related to these people but were renting a room, would they expect to be taken care of by that person? STOP TAKING CARE OF THEM They say they don't need it, they say they don't want it, so STOP IT. When you stop the care taking part, they will either start to appreciate you more, or you will become less stressed. Either way, you win.
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Thank you all again for being here!!! NO one can understand how hard, draining physically, mentally & emotionally being a caretaker is, unless they've been there or are there now. Today has been a particularly bad day. I bought each parent a 7 day med planner, put their names on 'their' planner in big bold black letters and got them planners that are different colors, so there'd be much less of a chance of error. This morning my s-dad got all of their meds bottles out and started separating my mom's mds (AM & PM) and put all of my mom's meds for the week into his med container. It was just one of the things that I've been dealing with lately. I've not been feeling great myself, even having some mild chest pain and have been severely depressed and getting panic attacks. I feel so alone and so so sad. I need all of you here...

God Bless you all,
Kathy
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I am sorry for your pain. There is no easy remedy for such a complex situation. I sign up for and finish 2 community college classes every semester I can. I like to read a good book - cover to cover - it seems to give my mind a rest. Hope this helps. The main thing is to keep the focus on what you can control in your own life - in a healthy way. God Bless.
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Hi Mmilady :-) Welcome! There's so much support here. I'm glad you're here for the support you will get, but feel bad for you that you're here because of you too being caught up in the often viscious cycle of 'caregiving'... I do live in my mom and s-dad's house. I pay them rent monthly. I lived on my own for well over 20+ years. I was a nurse, worked full-time, had a boyfriend, friends and a social life. I hurt my back bad lifting a heavy patient and now have multiple herniated discs, in addition to having fibromyalgia among multiple other pain causing conditions, and also deal with depression and anxiety. I have PTSD from witnessing a lot of dysfunction and violence that started in early childhood. I never wanted to have to move back home again! Unfortunately, I b/c of the severe 24/7 pain, I could no longer work and have been on SSDI disability for the past 5 years. I do what I can for my mom and s-dad, but I'm totally worn out. I'm doing less and less around the house for them, buy still find myself doing all of the grocery shopping, cleaning (including vacuuming that I'm not s/p to do per dr. orders and also it does me in. I pay the price in severe pain...), all of the laundry, etc... I'm becoming more depressed to the point that I just want to be alone and cry. I have no friends at all left. I think people get afraid that you might ask them for something...lol... I don't know. I do know that I'm totally alone in the caregiving department. I can't imagine ever having a life of my own again. Still, I do try to keep a positive attitude. Finding this group here has helped a lot.

Thanks for your support and understanding :-)

God Bless,
Kathy
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Hi Kathy -

I just joined this site for a similar reason. My problematic depressed mother does not live with me, but lives less than one mile away and is very much in 'want' and 'need' of my time. I am trying to come to terms with my resentment of my mother's need of me. I may not be much help here, but reading your situation, it seems for your sanity's sake, you need a break. May I ask, am I understanding you right in that you are living in their home to help them keep it? If so, did you have to give up your normal living situation to accomplish this, or have you always lived with them? I feel for you, Kathy. For what it is worth, know you are not alone in your despair. I don't know much about your situation, but it seems, if possible, moving out of that environment would be a 'positive' for you as right now, you sound emotionally drained. My thoughts are with you, friend.
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Thank you all SO much for replying! These people are tough. I made a comment to my mom a couple of months ago about how it's hard to take care of two older, ill people. She became furious with me and told me that "they take care of themselves and I don't do anything for them." That really hurt! Since they won't allow anyone into the house to help them, I have started to do much less. I honestly can't keep up. I have fibromyalgia, multiple herniated discs, chronic regional pain complex, etc... the pain is overwhelming and I've not had one pain free day in the last 10 years. So, if my mom and s-dad refuse to allow anyone in to help, all I can do, is to do much less. Thankfully I have a wonderful therapist, and she's doing all she can to help me get out of this toxic environment. I pray, actually 'beg' God for me to be able to keep my puppy with me. If there's any way for me to change this situation for the better, I'm in!!! For now, all I can do is pray, pray some more and keep reaching out. I'm SO thankful for all of you here and very greatful for all of your support and feedback.

Kathy
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Kathy,
I'm keeping you and all of us caregivers in my prayers. It's a thankless, but powerful job. . .one that God would have us to do. I'm also sending an endless amount of hugs of support, armed with millions of high fives for what you are doing. Thankfully in your mom and s-dad's case, there was one who was willing to step up to the plate ("YOU!").

Also call a family meeting and put your sisters on notice. Insist that they do at least one thing to help out because they are needed -- even if they have to do it remotely -- (pick up prescriptions from the drug store or groceries/cook a meal and deliver them to you at the door, etc.). Give them a chance to do the right thing. Now, if they fail to do this, it won't be because you didn't give them an opportunity.

I would also suggest that you enlist the assistance of understanding neighbors (men included), who might be willing to stay for a few hours with your parents (this includes any members of church groups), so that you can get a break (if for no more than take your wonderful doggie for a walk around the block, or even meet a guy friend for coffee). A male might distract your s-dad (especially if your s-dad likes sports), and they could watch a ball game, play checkers or a board game, or shoot the breeze together.

Also, you might have to pull some rank and insist that folks come into your parents' house to help. . .and I mean help YOU. Yeah, they will fuss and complain -- but if you can get somebody to help with the housekeeping, laundry, meals, errands, and/or grocery shopping, etc. -- you tell your parents that these individuals are helping you help THEM. Chances are one of them might start to notice that the windows are a bit brighter, the carpets are cleaner, there are more clean clothes, etc. -- and these folks that are helping out are part of the team (and if your folks don't notice this, that's o.k. -- YOU'LL notice it). They might even start to look forward to "so and so" coming on whatever day. You'll have to ignore your mom and s-dad's protests (which is hard to do), so that your health doesn't decline further. I had to do this for my mom who didn't want any type of home care assistance, but I couldn't do all of it, look after her, plus work too.

Also check with your county's department of social services/ and dept. of aging for additional resources.

My best to you and others too!
-Deb from Suitland, MD
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Willow, you need to TELL your parents that either they allow you to bring in a cleaning lady a few times a week, or you're through. Unless you're the martyr type, then keep trying to keep their unrealistic expectations alive and end up in a nursing home yourself, either way you'll be through. Both are your choices.
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oh kathy, i send u love and energy and patience.
1 suggestion- u say they absolutely refuse to let anyone else care for them?? Well, maybe its time to let them know, it is a necessity!!
u cant do this all by yourself--they will not be happy to have others in their home, but u have to get some relief-this can kill u-then what would happen?
try and be strong, see what your church can do- maybe they can
get a few people to volunteer a few hours here and there, that way
eventually u could get a break.
u are doing something very wonderful-thankless and difficult at the time, but u are good-and they r lucky to have u as a daughter..
write and vent as often as necessary, it will help-if only a little-and sometimes a lot-
sending u love
karen
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Thank you SO much for sharing some of your story with me and for understanding. I feel horribly alone. I'm having panic attacks and I am worried about my own health declining b/c of the 24/7/365 task of caregiving. I've spoken with my mom about having help come into their house to help with cleaning, esp. vacuuming, getting Meal's on Wheel's, grocery shopping, etc... and I've told her that I'm not going to be able to keep up with all of their needs. She and my s-dad blatently refuse to allow anyone into their house to help them...which in turn would be a huge help to me too. Unfortunately, I have no other family. I do have two step-sisters, but neither of them are fond of their father, so they're of no help. His one daughter won't speak to him at all anymore, and I don't blame her b/c of his cruel comments to her. The other step-sister lives only 3 miles away but she rarely stops at the house b/c she "can't handle the negativity and oppressive depression that lurks in this house." If she could help me with just one thing it would help, but she won't. I've asked and she's totally aware of what I'm going through with my mom and her dad, but still, she doesn't have to look at it. Both my mom and s-dad are 100% clear mentally and I'm renting a room in their house, since I lost everything when my own health went bad and I had to go onto Disability. The see how much pain I'm in and they don't have any empathy. They want to stay in their home no matter what, and since I live here I end up taking care of most everything. I know I won't be able to keep up this pace and I'm getting more depressed by the day. The only thing that keeps me going is that I have a 3 year old Pomeranian, who is my world. I don't know what to do regarding the situation I'm in now. I don't see any way out and fear being separated from my dog should something happen to me. My puppy has 'separation anxiety' issues with me, so we're a package deal. I do have a wonderful counselor, a pastor's wife, and she's offered to come to where I live and at least do an assessment of the situation. I pray hard and thank God that I have Jesus in my life. I know that if I didn't have my faith, I wouldn't be here, living like I am. There's just absolutely no joy at all in life and I have nothing at all to look forward to. I can't date b/c I can't bring anyone into my parent's house. I have no friends. My s-father is very inappropriate and verbally sexually abusive to any female that comes into the house. It's awful.
I'm sorry again for rambling. I'm so lost here and feel so alone. I'm SO greatful for all of the wonderful folks and support here!

God Bless,
Kathy
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I am in your situation myself and it does suck out your life. Have you any siblings who can give you a break? Social services in your town or county may offer help for daycare or finding affordable in-home respite care! Also many churches now offer help with daycare for the elderly (sometimes called elderly social network) etc. Just a few hours away can be so precious to you, please try to work it out. If you're sick, they could be without care unless you let others in family, neighborhood and community know. Remember Jesus loves you and can answer your prayers for help, he has me! I'll pray again that all caregivers such as we get help from unexpected sources, but we must care for ourselves as much as possible. Counseling over the years has been of great value to me. Good luck and God bless you!
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