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Let me preface this by saying:I do realize that not everyone is able to change their situation for financial reasons, but some of us are able, but choose not because of guilt.

Dear Karen, you have been tied up like a pretzel for the past six years with your mother. Ever since your wonderful father passed away, mom has been stuck like white on rice to you hasn't she? He was her center of attention and then you were. Maybe he enjoyed that. You, on the other hand, did not! It wasn't fun to have to bring her everywhere with you, since you weren't "allowed" to go to even a movie without her. Since your family is only you, mom and your two children, and mom kept saying she was lonely, you thought a few "hey mom, maybe you could get a smaller apartment. There's a lot of your church friends who live in assisted living. Do you want to visit some of them? I heard they're great" would work? Oh you silly, silly child. Mom said "those places are for people whose family doesn't love them." I know you have those words running through your head, don't you? Oh dear. Thought that was bad, didn't you?Well, it got worse real quick didn't it?

At least she was living in her house and driving then. But, alas, when she first started showing signs of dementia two years ago, your life went into overdrive and you had to do everything from paying the bills, transporting her everywhere (since she had two car accidents within three days), making sure she ate. Kind of ironic how you DIDN'T want to be the center of her attention, but you were kind of forced to make her the center of YOUR attention! Oh, and remember how stressed out and resentful and angry you were at this stage? Everyone said to put her in assisted living, but they didn't know her like you did. They didn't know that you tried and tried and said it six ways to Sunday, but no, your independent and headstrong mother wasn't going. Period.End of conversation.
Again, you thought that was rough. And Karen, it was. But, dementia being dementia, of course it got rougher.

Mom kept falling and then she would stay at your house and then go back to her house. That plan worked out great (hey, remember how guilty you felt when she fell because at least you would get a break when she went to skilled nursing for a couple of months?!!). Oh the joy of those breaks. And then (boo hoo), the day she came back and life went back to...not a life at all.

Six months ago she fell, went to skilled nursing (remember you rushed out the door when she was there and went on vacation without her?!!). OMG, a vacation WITHOUT your mother? Wow!! Never told her that did you? Probably too scared of the guilt trip she would send you on. And that is never a fun vacation to be on, right? When she came back to the house, you thought it would be the same pattern, back to her house in a few days. But sadly that didn't happen.

You looked for the "signs" you always look for, so she can go back to her own house, but they never came. Oh sure, she DID improve physically with PT and OT coming in the house several times a week. She did get stronger, but still, each time she fell, she would never get back to where she started initially would she? Sadly, there is no PT and OT for dementia is there? So each time she fell, went to the hospital and went to skilled nursing and came home, the dementia never improved, it just got worse. Every time.

And so, here you sat for the past four months Karen. And where was mom? Yep, living with you. You never really said "Hey, I think I'll have mom live with me." it just happened. But you knew how difficult it would be with her living here. You knew it was very difficult to keep up with all of the physical demands of dressing, undressing, bathing, doing her laundry, paying her bills, making doctor's appointments, taking her to the hairdresser, keeping an eye on her house, making sure she brushed her teeth. Arguing, or trying not to given the dementia, to get her to brush her teeth, wash her hands after peeing. Wow Karen. And don't even talk to me about the EMOTIONAL toll it took. Why didn't you just stick her in assisted living at this stage?

Because you wanted to do the "right thing" You wanted to honor the promise you made to your mother never to put her there.

And the consequences of unbelievable stress, wishing you were dead, having no life, 54 hours a week spent catering to her every whim, snapping at the kids because of your frustration, feeling EMOTIONALLY STRANGLED TO DEATH.

Yesterday you FINALLY made the right decision. You decided that mom will never ever be happy. She wants your father. Good luck bringing him back form the dead! You decided that at the age of 48, you COULD still be happy...given half the chance.

Today I will go visit my mother in assisted living. I will smile when I walk in. She will probably say "why did you dump me here?" and "I wouldn't do this to you." And when I leave? I will smile even more.

We, the caregivers, all deserve to smile!!

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It is OK that you young dear caregivers love your elderly members, but do not let the guilt "trap you own Life".
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Oh Debralee that says it all "got to live their lives in their 50's, 60's and 70's" THAT is what make me so resentful. No one is promised tomorrow! My parents did not want to care for my GF when he was old so guess who took their turn??? GAH!
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karenp thank you for your true and honest post. Your comment helps more for the caregivers of this site than the articles written on this post. Adult children have the right to chose whether they want to become a 24/7 caregiver without remorse or guilt if they chose not too. We have the right to live our lives the way we want without interfence or expectations from others in responsibility to aging parents. Both my divorced parents got to live their 50's, 60's and 70's enjoying their lives with no responsibilites, going on vacations and just enjoying their retirement. Now that I am in that stage of my life, I have every intention of doing the same thing irregardless of my parents needs. I will not abandon them, but neither will I give up my life to become a 24/7 caregiver.
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Karen,
I can really relate. I have quite belitteled by my sibs,sometimes so horribly that I wished I was dead too.l But If I had done things their way Mom would be dead, or at the very least she would still be staying with me, and I would be ready to shoot my self so they could have their so called deserved inheritance.
They are full of advice, critizism, and they even visit every few months.
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Just a word to those who say "never" and some others also. (1) Never say never; no one really KNOWS hows they will react in the future. (2) Those of us who make sure our parents are provided for but NOT in our homes after trying for so long may be dealing with parents who were unkind or even worse. As long as they have a roof over their heads, get good care and good medical attention, and we visit when we can, please DO NOT judge us or our decisions. To each his/her own! I HAVE made sacrifices and so has my family and now it is time for US to live without having to be stuck at home or worrying every time we go out; time for us to begin to enjoy our "senior" years.
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Just wanted to give an update: I have come to the conclusion that me playing martyr was not for me. I honestly THOUGHT I was doing the right thing by sacrificing my time, my energy, my happiness, my future, myself. After all, isn't that what a "good" daughter does? She sacrifices everything for her elderly mother. That is what I believed.

I was wrong. Honestly. If my mother was in her right mind (and clearly, with dementia, she is not), she would say "Karen. Love me. Do for me. Be with me. But not 24/7. Not at the risk of your health. Be my loving daughter. But it's okay to take breaks from me. Really. Create your own life. I want to be a significant PART of it, but I do not want to be ENTIRELY it."

Of course, those words I will never hear. But I know my mom. Known her for 48 years. I know she would not want me to suffer along with her. What's the point of two suffering?

I feel SO much better. My memory is completely back to where it was before. My house is gradually getting cleaner. I can follow plots on tv now instead of just thinking 24/7 about mom.

And guess what? Mom STILL loves me!! I make sure she is safe. I see her when I want to about 3 times a week. I bring her little treats when I come.

And here is the kicker: When I have been hugging her lately it's because I really WANT to. Not because I "have to."

Being apart from her made me see that I do exist, but I was on a self destructive highway, with a halo over my head. I have ripped that false halo off my head. And now I just love mom more than ever!
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Hey, just take a vacation after your mother or father has been placed in assisted living and will not cooperate because she or he does not like something and becomes abusive when unable to get his or her way instead of politely asking for sensible help. You need time off; just let the social workers take over buying supplies and non-prescription items for Mom or Dad - they will just have to pay for their substitute service if you are not availble. Don't think guiilt for a single second and get out into the world to your needs to work, get your errands done, socialize or travel-maybe for a whole month!! Just let some family member know that you are out-of-town then get going out-of-town to get a life at it. God says "Do not be Afraid!!".

PatatHome01
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When my mom was my age- 55- she had already been widowed and her mom had been diagnosed with Alzheimer's. She told me then that if she needed care later in life, she did not want to live with us. She in no way wanted to be a burden- and we should be comfortable putting her in a nursing home. She did develop Alzheimer's and after her 2nd husband divorced her, she had to move in with us. She stayed for 7 months and it was tough, but I felt we needed to help her through the post-divorce transition. She started leaving our house (to go home, which had been sold and was 100 miles away) and as my husband and I both worked, it wasn't safe for her here. I found a good memory care facility 15 miles from my home and she's been there for a year. Long story short, even though now she wouldn't be able to communicate her wishes, when she was in her right mind, she told me what she wanted for the future. The danger is in THE PROMISE that children are forced to make to their parents. I have 2 sons and I have already told them that if I become incapacitated, I don't want then to feel bad about making the decision to put me in a nursing home. Just make sure it's a nice one, that they're taking good care of me, and that they come to visit me. I DON'T want my kids to stop their lives to take me in to their homes. I don't want to be a burden, either. Have the talk with your children NOW, while you're still of sound mind. This cycle could repeat for generations and it's not fair to do this to your kids.
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Mark, I am worried about you...anything you can do to reverse early diabetes will be worth it and make you feel a lot less like you are staring down the barrel of a loaded gun. Many people need to lose only about 10% of body weight to lower insulin resistance enough to do this. Excercise and healthier foods on no money is not easy but can be done. Eat chicken. Eat air-pop popcorn. Eat whatever fruit and veggies are on sale that week. You have accomplished a lot and your life and your future matter, even if right now there is no way to see beyond making it through another day. If your income is negigable emough to put you in danger of losing your home,there ought to be some kind of help available - have you been in touch with Area Agency on Aging or anything like that in your area?
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I think one point many people miss is that our parents, when they become ill, and dependent upon us, are also going through a major change themselves. They are depressed, scared, and grieving for the life, partner, friends they have lost. They see the end of their days at hand, and sometimes feel they have nothing to live for. Viewing them as a burden, I think you miss the blessings that come from making the sacrifice and giving our loved ones some compassion at the end of their days.
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mshelper - my sibs don't help, and are uninvolved, and have even accused me of trying to "shake them down" for money to help mom. I was dwelling on my anger with them, and realized in doing so, they were winning. I prayed, and whenever they entered my thoughts, I would stop and actively change my thought process, even if it was to repeat a prayer or mantra, or poem. Anything to get the thought out of your head. Eventually, the thoughts will stop coming.
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THANK YOU EVERYONE!...but especially to KarenP and help2day your 5.8.13 posts were the best. I am so very grateful for this 'sounding board forum'. I wish I had discovered it a year and a half ago (before my Mother's issues contributed to my hair falling out & the balance turning gray from stress) Each day gets a little bit better. I just have to work on not being angry with or resentful toward my siblings who could help out more..but don't. That part is hard for me because I 'm having trouble turning off the negative thoughts about them. I want to be able to do what I do for Mom and not focus so much on what "they're not doing" to help out. I would appreciate tips from anyone also experiencing these feelings...by the way KarenP, your brother sounds like he has undiagnosed dementia..or could it be depression? just a thought..again thanks all for letting me vent, things haven't changed but I can see some light...
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Been caring for my mother for 10+ years. Recently she suffered a massive stroke. All she can do is feed herself. I dress, groom, bathe, toilet her. Its a 24/7 job. It is stressful. I get no help from my siblings. I also have mom's 95 year-old sister living with us. She is hard of hearing, messy, can't see well and has questionable hygiene habits. I get 20 hours a week help from women from a local church. Its cheaper than assisted living, and it keeps mom in her own home. It keeps her engaged, and it ensures she is cared for. She was in a skilled nursing facility for 3 months. It was one of the better ones in the area. I spent 12 hours a day there, and what I saw made me realize that there was never any way that any loved one of mine would spent one day in a place like that. After mom's rehabilitation was complete I brought her home, and this is where she will stay.
Its a tough job yes. But when I wake up in the morning I decide that either it will get the best of me, or I will get the best of it.
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I can relate to so much of this. Now my Mom "thrives" on one pain after another; pain is real, she takes mild pain meds, refuses strong medication. Arthritis, inactivity because of being such a fall risk, and no more PT left as a benefit. Has no concern or respect for anyone else in pain (even those in more pain than herself. I only visit her in public areas of the nursing since she always starts a verbal fight if we are alone (she never does this when others are around). I make sure she has what she needs, I keep in touch with all the staff, and I don't care they think she is demanding but mostly a "nice" old lady. They have not seen how she has treated people close to her, especially my Dad once he developed dementia. He was loving to her for over 50 years and she treated him like someone who should bend to her way of doing everything. I don't let her do that to me and that is why she tries and tries to get more attention from me in any negative way she can come up with on a daily basis. I will always make sure she is taken care of and not mistreated, but same goes for myself and my husband.
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I am exactly where you were. I could have written this myself. Thanks for the insite.
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I'm sure many of us, share your frustration. That however does not give one the excuse to abandon those in our care. If she is better off in a nursing home, then so be it. Otherwise I would never put someone in that situation. I have a cousin who is suffering severe depression over the guilt she has, for putting her Mom in a NH. I am an only male child, yet I will care for my own mother, for as long as I can. It's been six years already and at 65 I don't have that much of a life to look forward to. I also can't bring back the last six years!
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I feel trapped, exhausted and without hope in my situtation. I am caring for my mother who turns 83 this year and has multiple problems: stroke-2003 and in wheelchair and up to a couple of years ago was ok but the start of Parkenson, the diabates, incontience, arthritis and breaking an ankle ahs me doing everything plus the house. On top of this, I lost my job years ago, and despite caring for ehr 24/7, went to school and graduated suma cum laude with my BS degree and still cant find work, We are in forclosure on top of everything else and I don't sleep more than 4 hours a night due to worries and keeping one ear open in case she needs me. Putting hr in a home, if I could find one we could afford, without her books and all, she would not last a month. Don't know how long I can keep this up, my own health ahs dropped and with no med insurance and no money for meds, my own diabetes has reared its head. A job would solve problems but I fear I wil lose the house soon-her insurences do not cover home visits and I feel trapped with no way out short of aranging an 'accident' so my mother could live on my life insurance, but no one to care for ehr and the loss of me, on top of the loss of the rest of my family already (dad 1989, older brother at age 40 in 1995) would send her over the edge so that is out. I just needed a place to vent so thank you for listening....thank you...mark
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I hope your brother pays all the bills...sounds like a mooch to me. Sorry if that's harsh, but I had a BIL who lived with his Mother, too. Never lifted a finger to do a thing. Lazy, lazy, lazy.
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Thanks to all for your comments hear on Karenp letter. I see myself in a lot of what you all wrote. I have, too, gone into Mom's cupboards and thrown away canned good that had expired in 2006!!! Then I found cans that had no expiration date on them, so you can imagine how old they were! I threw away two FULL paper grocery bags full of outdated canned goods. I explained to my Mom that she would get sick if she ate these things. She reluctantly agreed and "let" me throw them away, but I knew in her mind she thought I was "wasting" food. Yeesh! When I go and visit her (and my brother who lives with her and is MINIMALLY involved with her day to day care), I NEVER eat anything from her fridge. She really doesn't cook from scratch anymore, but generally eats frozen dinners or my brother will take her out to eat (which is good). She takes all of her daily meds correctly because I have made out a daily "check off" chart for her to use.

I try to visit weekly but it's just so frustrating to go over the same things again and again and she doesn't want to change to make her quality of life better. Any suggestions I make fall on deaf ears (both hers and my brother's). My Dad died 4 1/2 years ago and he would do or take my mother anywhere (locally) she wanted to go anytime she wanted to go. Now she has to beg my brother to do anything around the house or the least little thing she asks for. He'll do it for her EVENTUALLY but not at the time she asks. Sometimes it's something that would only take him 2 minutes to do, but he crabs and whines about it like an 8-year old (he's 63). So, you guessed it. When I come over for a visit, she wants me to do all the little things he won't do for her. It's generally not a pleasant visit then, because I end up feeling resentful that he isn't doing more and crabbing at him to get off his a$$ and do stuff for her. It's SO frustrating, I want to scream! I have to remember to take a Xanax before I go over there so I don't want to shoot myself (figuratively)! My sister, who lives closer to my mother than I do (like 1 1/2 miles away) RARELY ever comes over. She's useless, too. Another frustrating thing for me. At least my brother is a "warm body" to live there with her 24/7 to at least keep a MINIMAL eye on her. My husband put extra handrails around her house because still wants to climb the stairs to do "stuff" around the house. She's stubborn that way. She won't ask my brother to help her anymore (get her stuff from upstairs or in the basement) because she's tired of his whining about it. Have I talked to him about this whining? You bet. It just goes in one ear and out the other. Have I talked to my sister about going over and visiting Mom more often? Yep. Again, in one ear and out the other. Ugh!! So the old woman (84 years old) goes down the basement and upstairs bedroom stairs BACKWARDS so she doesn't fall holding on to the railings with both hands! I can't be there 24/7 (like my brother is) and I know one of these days she's going to fall and end up in the ER or worse. Assisted living --- she won't go --- again stubborn and has the unreal notion that Medicare will pay for it. She doesn't need skilled nursing. Have an aide come in, you say? Nada. Nope. Won't go for it.

Finally, one Christmas, my niece (only child of my sister) bought my mother a maid service for a couple of house cleanings. My brother won't even run the vacuum!! My 84-year old mother was trying to get down on her hands and knees and scrub the kitchen floor like she'd done all her life. I told brother, "Mom can't do that anymore! You're going to have to pay for a maid service to come over her twice a month to wash the floors, vacuum the rugs and clean the sinks, bathroom, etc." He's retired now and you better believe he's paying for the service. I told him I have my own home to clean. I'm not gonna clean my Mom's house, too, especially when he doesn't lift a finger to help her keep it clean. She and my Dad never forced my brother to do anything (because they called him stupid all his life) and enabled him. Now he doesn't do anything! She still goes up and down the basements stairs to do his laundry! She won't teach him how to do it or let him anywhere near the washing machine! Aaaacccckkk! (That's me screaming -- LOL).

They basically are both enablers to each other and I have to keep my distance or I'll mentally go over the edge. I know when my Mom passes away, he's going to fall apart and end up living in his own filth. Did I tell you he never takes a shower, brushes his teeth, and wears the same clothes every day? And no, he does NOT have the beginning stages of Alzheimers or dementia. That's just the way he is and was brought up by Depression-era parents. He was the first born and only boy. Bathing wasn't a priority in our household growing up. I don't know how my sister and I ended up showering daily -- go figure. Again, they never made him do anything. Thank God for summer coming. Everytime I visit over there, I open ALL the windows to let the fresh air in! My mother keeps the house drum tight because she's "cold" (normal elderly complaint) all the time. The house reeks of body odor. I don't know how the maid service stands it when they're there for a couple of hours.

So thank you to everyone who writes and vents. I'm so grateful for this site, I can't tell you.
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Wow!! I am speechless at all of the comments here. Thanks everyone for your responses. I truly did feel very isolated and alone in my caregiving for my mother.

I really wish I had done this sooner! I still do lots of things for my mother like doctor's visits, hair appointments, bill paying, being an advocate for her and a myriad of other things too. What on earth made me think that I could do all of that AND have her live with me 24/7? Optimism? Hope? Guilt? A sense of responsibility? Probably those things and a lot more.

Now I see my mother when I want to. No, I have not abandoned her and NEVER will. I see her probably about 3 to 4 times a week for a total of about 10 hours a week. A dramatic decrease from the 54 I HAD to do. Now I do want I WANT to do.

I remember actually missing my mother too. Oh not the stranglehold missing, but the wow, she isn't here missing, so I went to see her. And when I left, I was able to do things I wanted to do too.

kamkim, you are right we must be twins! Neither me nor my mom were happy. And sadly, she still isn't. But guess what? I am happy. I am joyous. I have a life ahead of me.

Before I was filled with resentment, anger and frustration. I hated the sound of my mother getting out of bed because that meant I was on the caregiving clock.
I hated being with her ALL of the time. Draining. Sad, but I hated being with her.

Now? My heart is alive. The stress I had incurred had actually affected my memory. That's gone now. I have it back. My house was a mess. Now I'm trying to clean it. My job was mom. Now I want to start my own business.

And I love my mother more now than I did before. I look forward to seeing her.
I feel my daughter-mother connection back with her.

To those who are overburdened and stressed and are able to change it. PLEASE PLEASE change it..You will likely love both yourself AND your mother more when you do!!
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KarenP hit the mark! It was as if she was telling my story...except my mother still lives in her own apartment. As long as I don't SEE all the crazy things she does, I can get a little stress relief.
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Wow. You and I must be twins. The BEST THING I EVER DID for both of us was find a suitable Assisted Living Facility. Before neither of us were happy. Now at least one of us is!
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Good for YOU, Karen!!! WhooHoo!
You learned so much in a few years, huh? And you are very young! I'll bet you will continue to feel younger and happier every day. Past the guilt, the what ifs, the rationalizing. I am proud of you for Making the Decision to Live your Own Life and still continue to be a Loving Daughter, and a caregiver to your Mom. Blessings:)
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You are so right. Twice in the last 2 weeks someone has asked how * I * am doing...a rare occurrence, and both times I broke out in full blown tears. Thank God we have each other!
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Each one of your comments above are excellent!! I do agree this is probably the only place to vent and release what is happening in our lives. NO ON can fix it or make things go back the way they were - but I see that we can help each other through these very trying times!! We HAVE to make time for ourselves - our lives and health demand that we do!! :-) Maybe if we vent here, we can smile at our family and friends, without dumping! Our precious close friends are asking to help, sometimes - we have to learn how to let them. That can be the hardest part. Give and receive.
Hugs and Smiles to each of you!!! Thank you Karen for sharing your awesome letter to all of us...and everyone's responses!!! We are NOT alone!
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Yep, really good to hear that there are others in the same boat. I have NEVER felt so un appreciated in my life. Sad state of affairs. Been at it three years with no end in sight. I too have written a letter to myself to be given to me on my 80th birthday (God willing) to remind me that my children are trying to help and not to act like an ungrateful person. It's a LONG letter, LOL! Hugs to all!
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It's so nice to know you are not alone in this living hell. It's also nice to remember you DO have a choice in your own happiness. Thanks Y'all, this site is a life saver for me.
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Thank you! I share some of your experiences and the guilt and being manipulated, but Mom will not live with me. Thanks for helping me - all of us - remember that we too deserve a life.
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To oldcodger2, boy oh boy, have I been there! I am hysterical reading your missive about how you "threw out her things" when you threw out ancient food items that probably would have made your Mom sick. I experienced the EXACT SAME THING after moving in with my Mom. As much as I feel for you, I must admit some gratification that I'm not the only one. In addition to that, her fridge was so disgusting, I became seriously ill with vomiting and fever after cleaning it out, probably some virus or fungus, that's how long it had been since anyone cleaned it. While I was doing that, she was out with my brother and his kids, playing with them at a park for several hours. This, after telling me she was "too old" to clean anything, and "too poor" to hire a maid. I am bedridden myself several days a month with chronic pain. Did I get thanks? Appreciation? No. I was screamed at for "throwing away her things." Huh? And when I was in too much pain to get dressed to greet my brother, his wife, and my nephews afterwards, I was made out to be a nasty blue meanie who doesn't let her nephews in the house. In truth, I was too embarassed because I was dirty, smelly, and un-made-up. I am also balding, and was too tired to put my wig on. Where is my brother, who lives close by, in all this? Good question. Thank you for making me feel less alone, and making me able to laugh about it.
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OH yeah....know exactly how everyone feels...and I've only been at this a few months. I hate myself for feeling the way I do, but I have no life now and I know it's only going to get worse. I'm caring for my husband who is 17 yrs older than me. Age didn't make a difference 30 years ago but it sure does now. How foolish I was!
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