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Caregivers and Stress
i have thrown myself in the position of caring for my aging mother, again. i went to a stress management seminar for the caregiver yesterday and it was quite enlightening. i'm still processing all of it.
Anyone else in the caregiver role? A parent, partner, child? |
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She is demanding to say the least. |
Red's mom lived with us for 7yrs. It was always stressful and it took a great toll on Red. Her mother had dementia and as it got worse it became undeniable that it was time to let go. Having to put her mother in a nursing home was not easy but it actually extended her life. As the counselor explained, once a person reaches a point where they know no one around them it is time to let go. The facility we chose for her to live in took her without any expectations and that was the answer. Red could no longer deal with watching her mother fade. Red needed to let go for her own sanity. The people where Red's mom lived knew her how she was not how she use to be. That is the hard part of letting go, you think your care and love will bring them back, the truth is it won't. It becomes a guilt trip for a lot of people.
Dee I don't know your exact situation but I will send positive thoughts your way. It's not easy and I commend you for deciding to take this on. Your mother has a great daughter and I hope you know that about yourself. Peace! |
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Its feels like you dont doing all you can to take a few hrs a week just to be U. you will need it take it and DONT let anyone keep u from it |
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((((( Red )))))) for Red, it must have been hard. My mother and i calcified this role reversal in my twenties. Nothing that has happened over the years was without my consent. So much of what is happening now brings up old stuff. She is extremely CLINGY. When i don't invite her to do things, she becomes snarkly at me. People say not to take it personally, how can i not? It stings! |
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In my group yesterday there was a lady there who was widowed, then her boyfriend who she was also caring for didn't want her there anymore. She was so lost. She said the same as you , she felt she has no purpose. Why do we feel we have to be caring for someone to have a purpose???? i was not asked to do this, i chose it. i moved back to New Orleans, bought a house with an apartment/cottage in the back to put her in, because she wanted to be closer to her kin, only she has complained about just about everyhting and not found any happiness. She wants to be IN my house. i want to live alone, and for the most part she is in here anyway, i don't want her here when i wake up and go to bed! There is no reason for her to be. i was dillusional when i thought she would be happy in her little home. She clearly is not, and reminds me daily that she wants to be IN my house. Bottom line is that there is old stuff.. that i will never be enough and she will always be miserable. |
I live 15 mins from my mom and have for the past several years. I take care of things she needs to have done, take her to regular doctor appts out of town to see her heart specialist and her vascular specialist. I help fix the house when it needs something , work on her car or van, etc. etc. My mom needs me around, so I am here. We lost my stepfather in 2010 so I remained close by. I would much rather be living in Austin, but mom needs me, so I'm here. My younger sister lives in TN and helps with what she can like online banking for her, helps pay mom's bills, and sends money or whatever should I need something for the house I cannot afford to get or if mom needs anything. My older sister stopped helping period. She's a bitch and when mom goes, I"m gonna blow my ever loving mind at her about it. I was asked by my younger sibling if I would stay to help mom and I promised her and my mom I would. Hence, I"m single and cannot take on the responsibility of looking to date anyone let alone a relationship. I have already enough on my plate with my own issues and making sure mom is alright. She's the only mom I have to do what I have to do for her.
Dee, I pray your time with your mom will be good times with her and that you don't become overly stressed. I know my own mom can be very demanding among other things. |
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i have decided that i can't worry about what others won't do. My brother checked out LONG ago. i have to do what i need to do for me and let the rest go. Some ask me how i can be so good to my mom with the upbringing that i had. i have my crosses to bear, she has hers. |
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Could it be that your mom is afraid to be alone ? I don't know her but sounds like it. When my stepfather died, I took the brundt of my mom's anger and since then it's not ever changed. She's nice to my sisters but I"m the one that gets yelled and screamed at and told things that stings really deep, that are truly ugly. I fully understand where you're coming from . I just can tell you from experience, to keep going to therapy, it will help you learn to step back and not take it personally as much at times.....not all the time......but sometimes you'll be able to. If you need anything let me know. |
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I dont know if ppl r called to take care of loved one or not. When both of my partners got sick and we knew they were going to pass I CHOOSE to stay. I can say that neither of them really was one to complain however I know that no matter what you do for some it will never be enough. I had a friend who took care of her father and he was a piece of work. By the time they had to find a home for him there was so much animosity tween all the family members it wasnt funny. I swear if i have to take care of my parents i will but my brothers better b there to give me a break when needed |
I'm the caregivee. My wife is the caregiver. I think that a person who has gone from being productive and successful and even adventurous has a right to be angry with themselves when they lose those qualities unwillingly. That being said, I don't think it's right to take it out on your caretaker. I know I've done this, but the times are few and far between. Usually it's happened after a lot of frustration has built up and she's wanting some recognition for what she's going through too, and somehow, I haven't done that.
It can start easily, maybe she was putting my leg wraps on, and making me feel like she was rushed or maybe she inadvertently bumped my other leg while passing the wraps over and under. Of course I'll say Please be careful, be careful of my legs. She'll get exasperated and claim that she is, with that tone that means she's heard this before. Maybe I'll feel the wraps are too loose and say so, and she'll say they aren't, and of course within a few hours, they are so loose, they've come undone. It can be the smallest of things. A tone. A sigh. A look. A certainty of being ignored, rushed, refused. I imagine it's the same for nearly everyone. We've worked it through, but still we can have our days. She just needs to get out of the house, go to a movie, go out to eat. Just go away. I can't really go away. Maybe I can go to another room and stay there so she has some time to herself. I try to do as much for myself as I can, but even I had to come to grips with what I can't do. She worries about going too far in case I fall or get hurt (a brush with a empty cardboard box tore my leg open and it took months for that tear to heal). I think we've worked out a lot of things, and she meets with my doctors after I have, in case there're things she's concerned about or wants to talk about privately. I also have to remember to recognize her, thank her for cooking, tell her what I did like about it instead of what I didn't like about it. Offer to fold the laundry since she's washed and dried it. Try to keep my side of the bed made when I'm getting up so that she doesn't have to. My arms aren't too badly affected so I offer foot rubs. The most important thing I have to do is that when I'm frustrated, I have to remember not to take it out on her. She's likely just as frustrated as I am. I try not to deal with social security or things that will get me upset when she's around at all. And most importantly, I have to remember to thank her sincerely for what she does for me. Usually at night before she goes to sleep. I want to make sure she knows that I know that she's valuable to me and not just some health care giver that I got stuck with. |
When my grannie finialy became so forgetful she didn't know where she was nor could she deal with the live in sitter I finealy went to night school to finish high school and cared for her myself,this went on for a couple of years.One morning I got up to my mother asking me where she was,I said check the bathroom,well grannie had some how unlocked the safety latches and was no where to be found.She was almost 80 at the time,I called the police,any and every one I knew,the mounted patrol that I belonged to got involved so for three days no one knew where she was.Then a friend of ours who owned the old family grosery
about a mile from home called to tell us they had her at the store,they herd something going through the garbage cans' thinking it was an animal so went to check it out then found her then called us.She was starving,covered in bug bites whit scratches plus bruises.I went to pick her up.thank goodness she knew who I was,I had her checked out by a doctor that said she was just a lost person who was probly on the river banks from the injuries she had but no one had done any thing to her thank goodness.We put her in a care facility that took really good care of her.BUT,I was the hardest thing I had to deal with at the time.We all blamed our selves for not being more aware of her roaming the house at night,but she had never done anything like that before. Till the day she passed I went every day after school,brought her home on weekends and holidays there she was put on meds to help her be easyr to deal with.I'm glad she had such good care at the home but wish I could have done more,now I know I did all I could so did mom.The other family members,some did what they could some fell into the void. Dee just take it one day at the time,go to what ever help group you have,as for the family that dosent feel they could help you cant' change them,I know I have tryed.One thing that could help is adult day care,I worked in one for a long time it was godsend for the families of the people that came that came,we had a nursing staff with a staff that really cared for everyone.I will send you all the energy I have to send.Take care . |
I love this thread. Even for those of us who aren't primary caregivers now, there's a time when many of us will be on the caregiver or caregivee side in the future. Whichever side we fall on, I think it's helpful to have more understanding beforehand.
And as the daughter of a primary caregiver, I'd love to know how those caregivers here are most in need of support. As a caregiver, what most do you need from your loved ones who are not in the caregivee role? |
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It was interesting to think about the question of what support i need. When I was recently hospitalized and then recovering, my friends took up my responsibilities to mom- and that was an amazing blessing (not least because it involved travel to her). Also fascinating to have to be the one receiving the care, instead if giving it. (A short video about my illness is in my signature link) I'm single, and starting off trying to schedule dating around eldercare can be tricky and/or embarrassing. I know I should think "If someone can't handle my devotion to my mother, it's a bad match!" But what if the woman is really hot and I just want to date her? Anyway. When I had to live with my mom (she had a more serious situation then) it was also awkward to not be able to bring women home. People have told me that I'm "tied to my mother's apron strings" and that it's usually a gay (male) clichè to fret over one's mother. As always, it comes back to sexism and homophobia I guess. Ever since I started taking care of Mom I've wanted to make a dykeumentary about how lesbians - who were often kicked out their families for their sexuality (and/or gender expression) are the ones who end up doing the eldercare. Is there already such a film? If not, should we make one? |
What an important thread.
How incredibly emotionally draining for any of you who find yourself in a caregiving situation with someone you love.
That being said, my situation is being the primary medical POA to my male parent. Did I mention he is a POS? I believe it may be easier to deal with a parent whom you loathe as opposed to having warm and fuzzy feelings to someone you adore and like? Any thoughts? |
NImr t
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I pray daily that if it comes to me caring for him that the anger, and fear I have for him will not show and that I will make WHATEVER time he will have left will b comfortable and some hoe loving |
Nat, to answer the question of what I need from loved ones because I am a caregiver to my mom..............
I need support, I need relief, I need to have a life of my own and not just one that encompasses mom. But the latter will have to wait as I don't live in a community that has any lesbians around, so I have no close friends near and I haven't seen the few friends I had in Austin in a long long time. I do once in a while, save up money to go see my cousins and stay gone for a few days, but it costs me a financial hardship to do so because I live on a limited SSDI income. The only person that I can talk to about my stress levels when mom gets into her "moods of yelling and ranting" is my shrink that helps manage my care for my ptsd/anxiety and depression. I know mom doesn't mean to do and say the things she does, and that she truly does appreciate me helping her when she needs my help. I know and understand how she feels as well. I get it. I too have lost a a part of me in my disability and not being able to work anymore, I"m physically disabled on top of the other. Ok, hope more people post. I have subscribed to this thread. Thanks Dee, for starting it. |
Today's stressors came in the mail for mom today.
Letter 1 from social security stating they are taking away her SSI. Letter 2, 3 and 4 are taking away her food stamps, medicaid, and assistance in paying her medicare payments and assistance with her RX costs.........trickle down effect from a mofo typo in the system between VA benefit amounts she will be receiving Dec.1st and her SSI/Social security being notified electronically. SOMEWHERE SOMEONE WITH FINGERS THAT DON"T WORK AND A MIND THAT CANNOT COMPREHEND that she actually receives 110 from VA NOT 220 in Dec. 2013 caused this f'n problem. NOW I have 15 days to get the system fixed so to RESTORE mom's full benefits of everything they took from her. THIS KINDA SHIT PISSES ME THE F OFF. I am so freaking stressed out today from making calls that would do nothing for her today, that it's pathetic. Turned it over to my younger sister to see if Social Security will talk to her, she's signed on as someone that can talk to them about mom's case with her case manager, even though mom was sitting in the room telling social security to talk to me about this to get it resolved before DEC 1st. Why can't they get this shit right?? IS it that f'ng hard to do that job? JESSSUS H CHRIST man. I hope that mom will move to TN to be near my younger sister whom handles most of the issues like this, so she can take care of her better than I can. My sister bought a home for her to move into but mom refuses to go there. Mom cried so hard today when she read those letters then blurted out she was better off dead. I had to step in and get her mind right and tell her it was going to be alright. The stress that she already lives under with not enough money to live on and now this, just broke her today. All I could do was tell her it would be alright that we ...my sister and I... would make sure it got fixed. Then I find out that next year, the VA, Social Sec. and SSI are all giving a 1.5 percent pay raise next year in Jan 2014. so I'll have to go through another reporting of mom's income changing as soon as she gets that increase and deal with that then Before they start saying AGAIN that she owes back pay because they overpaid her like they did this year and the year before. IT's a never ending fucking battle with the gov't. and I'm just sick of it. Why can't they just make it more simple and do the job right the first time. SMFH@ the system. Anyone else dealing with this kinda shit yet???? I hope not. |
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I am going to read thru the post but i was reminded the other day that sometimes we are caregivers of ourselves, always. Ever had to put your own needs above all else? Thats a hard thing to do, and that in itself can be stressful. |
The support group i went to the other day was all
About self care for the caregiver. It was about admitting that its ok to be upset and losing patience. Its to want some time away. A lady spoke up who has been married for 45 years to her beloved. He had a stroke. He is angry at the world and takes his frustration out on her. She broke down and said she is ANGRY as hell because this is not the retirement she planned on. She does not know this post stroke husband. She feels robbed. She is at her wits end and i was glad she attended. Helps me feel not so bad about my own situation. |
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Syr says i am an emotional masochist :| |
VA Matching system and social security/ssi
My mom draws a small check from the VA as a widow because of my stepdad's passing. She also draws SSI and social security. This month mom got a letter from social security saying she would be drawing double her VA benefits due to the VA matching data it received. Guess what happened? It was a MISTAKE that caused her to lose her SSI benefit which in turn stopped her medicaid, which in turn stopped her Medicare premium payments, which in turn stopped her Rx assistance program, which in turn stopped her Food stamps. All because the VA is now using a computer matching program that sends the information the widower receives about her VA amount to the Soc. Security Administration which caused a DOUBLE amount to be shown as being received next month, which stopped all the benefits she was getting by the end of this month, NOV. 30 2013. Between my sister and I, we were able to get social security to get the correction made, but still have to now RE-APPLY for mom's food stamps SNAP benefits. Her check from SSI will be late next month if not the month after, and I'm still not sure if her Medicare savings program for paying her medicare premiums and extra help with her Rx 's will still be in effect for next month due to this mistake. Soc. security says it should be alright, but to reapply for snap food benefits which will take 30 days to get it processed, so mom's food stamps probably won't be here in time on the 1st of DEC. like she needs it to be. This new matching system between the VA and social security has caused problems for many widowers that I saw in the Human Resources Dept. complaining about all their benefits being stopped due to the same problem I am helping my mom deal with NOW.
IF you have a parent you help , watch for this issue, and get on it right away or it's going to be a mess if you don't. JUST FYI. If you need any help with this , let me know, I've dealing with it now. Justy. |
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Good Gods.... now that must be extremely stressful. My mother only gets SSI and medicare. She pays for supplement insurance everymonth. It works for her. She has had some serious medical issues and it saved her from going into debt. Its a good insurance and she loves the peace of mind it gives her. Then my sister decided mom needs to stop *wasting* $200.00 a month for supplement insurance. i disagreed. i have enough to deal with where my mom is concerned and chose NOT to deal with this. i told my sister she can take this issue up with my mom. She did, my mom said she didn't want to leave her insurance because its a good one and she trusts it. That should have been the end of that. She mentioned it to me and i told her that i was not interested. THEN my sister writes to me a long snarkly email about the issues with my mother and once again turned it around that she is a victim of some sort. Yah that ended well! |
i've never heard of people on SSI getting food stamps. How does this work?
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If you are getting SSI and social security, you may qualify to get food stamps....New name is called SNAP, Supplimental Nutritional Assistance Program. Apply at your local office, make sure you give them a copy of your SSI benefit letter(if you don't have one call social security and ask them to mail you a copy of your benefit letter for SSI it's diff. than social security), and any other income you get. IT varies from state to state the amount you can recieve in SNAP food benefits. Also, if you qualify and receive SSI and social security, you can most likely qualify to get your state to pay for your medicare part B and D premiums (or most of them) and possibly even for getting medicaid. This depends on the amount of money you get each month and what your state allows. Please contact you local food stamp office to ask about snap and medicaid applications for paying for your medicare premiums. You can also contact social security to ask them about an application for EXTRA HELP for paying for your medications too. . Fill them out, you never know what you qualify for.
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Dee, I sent you a couple pm's you might could use for info.
Justy. |
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My stress with my mom is not so much on the finance end, although she would be in a home if she did not live with relatives. My stress is frustration. Frustration with her enjoying being helpless, her being inconsiderate and unappreciative. i am also very much aware that i put myself in this situation again. |
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i feel all i hear is *close your door, lock her out, tell her to go home, set her straight, don't do this don't do that, TELL her ... " especially from those who would never speak to her this way, like my sister. and although all those things are the logical thing to do, they are not who i am.Maybe that's why i am in this situation. i feel i can do all those things and not in a way that makes things worse. When i explore WHY i do this *thing* with her, and i do, i know its because of my upbringing, wanting that acceptance, but i am here now, i have to live with myself, and for me i have to figure out a way to make this work so i am not completely insane, and its one day at a time. New challenges everyday with her. i came home today from work, and closed my door (signal for stay out!) and spent a while just being home and also sending a message that i am not available 24/7. The whole time i knew she was back there waiting for me to open the door. i am trying to train myself not to think about that and just *be*. THat is the part i am struggling with. After two hours i texted her to tell her that she could come over and watch tv with me if she wanted to. No reply and she was in the door within 15 seconds. i basically have to kick her out every single night to give myself time before bed. It feels like i am kicking her out, because going to her place is pretty much the worst punishment in the world. Its hard to live this way, but i have faith that it will get better and we can get through this. |
Dee, I do hear you and I do get you. I totally do. I get that she's driving you insane or making you feel that way. I get that you are doing this because of your upbringing.....same here with me and my mom. I DO understand that you have to put your foot down about your mom being over all the time, and I totallly get that ....totally. I Live in a seniors and disabled community and the neighbors around me are constantly knocking on my door and needing mo for something. I had to pretty much get ugly about it because trying to tell them in a nice way that they are too needy just wasn't getting anywhere, and all the complaining about themselves. MAJOR stress overload on me and my own shit ya know. Then I have to deal with my own mom and how she treats me at times. OMG talk about major fucking ptsd/anxiety/depression overload,, can you stay stick a fork in me I"M DONE !! Now that I've gotten the point across to most of my elderly neighbors that I"m not available at their beckon call, that part of my stress is reduced a little. BUT, I still have my own crap to handle and then stuff going on with my mom like the shit I am NOW dealing with. Somedays I just wanna move the fuck away and be done with this, but then that part of me that says NO she's your mom stupid, do what you gotta do ,,,, kicks in inside and I stay. I've given up having a relationship with anyone because I take care of mom even though I don't live with her, I still have too much on my plate to even date anyone. .......besides the fact that I live in BFE little town heehaw tx that doesn't have any gays around here. UGH just another thing I deal with. I miss Austin, I miss my few friends there, I miss my cousins and my other part of my family that I connect with, and someday I want to move back to Austin area or atleast near there. I love it there, but alas, I took on my due dilgence to take on my mom and be here for her and any and all issues that come up be it going to doc. appts or fixing something with the car, her house or anything else that goes haywire like paperwork and such. I do what I can on my end, and my younger sister that lives in TN, she takes care of the bitching at social security and paying some of mom's bills for her out of her own pocket cause mom can't afford things like car insurance, etc. If it weren't for my younger sister, my mom would be really in much worse shape than she is. SO, I get EXACTLY where your coming from. I'm just sorry your mom doesn't appreciate anything about you and what you're doing for her.
Atleast mine will apologize to me an then cry and tell me thank you for helping her after she's yelled and screamed at me about her frustrations and whatever is bothering her. I"m sure you're not even getting anything like a thank you at all or even apology for anything she's said or done in the wrong to you and for that ................I can understand your frustrations with your mom and family with what they tell you that you should do. It's not that easy is it ? I KNOW IT"S NOT....period. Hang in there my friend. Hang in there. OH and I don't deal with stress on any level anymore. I can't take it or handle it most of the time. My ptsd and anxiety disorder has trumped those coping tools. |
Dee, here is a link for the Medicare Savings Program cause your inbox is Full.
This covers the QMB , SLMB, QI stuff I sent you a note about. Just read up on it for information there should you need it. http://www.medicare.gov/your-medicar...-programs.html |
I left Atlanta and moved back home in 1982 to care for my terminally ill mother. I took her to the hospital for her chemo treatments, spent the nights with her in the hospital. The nurses were so good to us. They would wrangle a cot into my mom's room for me to sleep on. I have always raided the refrigerator at least once during the middle of the night. The nurses did not scold me for staggering out of my Mom's room half asleep in pajamas to get a couple of pints of chocolate milk and eat anything I found that looked good.
Dee, I want to make a couple of suggestions since you are involved in a difficult situation. Take great care not to let your battery run low. Also, it is very important that you make time for you and take it. Best Wishes to You! |
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The day will come where she is dependent on me, and i know it, but right now ain't the time. |
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Thank you, and thank you for the PMs with lots of information. For me, i DO enjoy her company, i can talk to my mom about anything. We love doing the same things, flea markets, garage sales and good ole trip to wal mart. i love that someone is around here, what i don't love is her smothering me. She will apologize this way "go, go have fun, its not your fault you have a life and i don't" Thats her version of an apology. :| She sits in pity land watching my neighbors come and go, She misses working. Work was her ONLY social activity. She still goes to visit people where she used to work and envies them. She just point blank hates getting old. |
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I get you when you need to have a life of your own and need not to be smothered by your mom. I think I"d go nuts if my mom smothered me on top of all the other stuff that goes on. I KNOW I'd lose my coping skills in some way. When I Lived with her, it was worse than it is now, so I moved out, couldn't take it anymore. It's better than it was at least for now. This past year, my sister bought a place that she remodeled, in TN down the road about 10 mins from her house, so she could try to convince mom to move into so she could be closer to her when she needed to be. I"m game for her moving, but mom is adamantly saying NO WAY. She doesn't understand that she can't afford to move into low income housing and her house is falling apart due to termites over the years. I"ve done all I can do with keeping if livable, but the time is coming soon that she will need to move out of it. Thanksgiving my sister will be here a week staying at mom's and I'm sure she's going to talk to her once again about her moving to TN to live in that home she got her and fixed up. It's in excellent shape and is on a beautiful piece of property. Mom could live there and not have to pay rent, just bills and if she can't afford all of them, my sister would help her pay them. I hope that she comes to realize that it's the ONLY option she's got. I can't help her financially. |
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special program for ssi recipients for medicaid, food stamps and medicare savings programs.
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Just an FYI for you. oh, and SS is not the same thing as SSI they are two seperate checks/benefits. SSI is ususually given to those that don't draw enough SS pay and there is a yearly allowance made to cover the difference by getting SSI benefit with SS. IF you dont' understand any of what I'm saying, call me, I'll be glad to explain it to you, anytime. PS.......... If you don't get SSI because you make too much SS then you must apply for food stamps via the regular application process. |
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