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#1 |
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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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#2 | |
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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?
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#3 |
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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? |
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#4 | |
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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 |
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#5 |
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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.
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#6 |
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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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#7 |
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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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#8 |
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Hi, I'm a caregiver for my mom who is 94yr old now and my sisters legal guardian. She has slowed down a lot more and her memory is starting to affect her and I have my sister who was born slow...She used to help me more but she had surgery in 2014 and right now she needs to walk more and start lifting weights to get her arms stronger. She doesn't walk as much as she could, so she's a work in progress..
Yes I get somewhat stressed but I'm grateful that I can be there for my family... I have been in recovery for 20 yrs now....I am grateful that I found recovery and I have a place to vent, at meetings (AA/NA), and meet people that are care givers too.... I manage all accounts , bills , etc. , I don't have more time for home repairs or work on property. I'm on disability but I think that's helpful because I can be home more. I have work to do on my property too but one job at a time....I'm going to finally go and talk to a worker and see what kind of support I can get....I'll sign my mom and sis up for meals on wheels and see if I can get help cleaning the house....whatever help I can get will be very helpful I would love to have support from a spouse but that's not the case... Some day I will find the right lady as a partner and best friend or she will find me..... Anyway that's my story .... To all here, I just take it one day at a time and take timeout for myself....
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#9 | |
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It does not have to be a licensed person...they just take a 1 day seminar about rules and regulations. My friend gets 24 hours a week of help with feeding, dressing, bathing...they don't monitor how the hours are broken down, so someone could come in and clean, do laundry, cook a weeks worth of meals for the freezer, etc... IHSS is the agency, check your listing for the number in your area. Good luck! |
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#10 |
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A lot of my dear friends are posting on FB about their broken hearts and missing their mother's. I still have mom. So I will shut up now and take care of mom. May be a while from here but mom comes first.
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#11 |
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I have been home with mom for over a month. I have noticed that she wants three meals a day. My batchelor life was never like that so I am cooking a bunch. I also noticed that she gets winded walking from her bedroom to the living room and that concerns me. Maybe I can get her to walk more.
My number one job is to keep her safe and healthy. We are good so far. My germaphobe brain has worked so far. Be safe friends. |
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#12 |
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Mom fell on the kitchen floor today. It took me 25 minutes to get her up. That was rough. I want her to use a wheel chair but she is defiant. Ugh .
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#13 |
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(((( chad's mom ))))
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#14 | |
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I once fell in the driveway and the only people available to help me get up were my Mom and an elderly neighbor lady (who didn't actually do much besides stand around fluttering her hands nervously). That was pretty humiliating, lying in the driveway for about half an hour. Mom finally brought out some couch cushions and I kind of rolled onto them until I was high enough to get my knees under me. Then they braced my walker while I pulled myself up. I'm sure I was a sight to see. I did not know until recently that you can call the fire department, and they will come help you get up if you have fallen.
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#15 |
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In March mom will be 89 years old. She has lived with me for almost 3 years. She can barely walk but she has most of her mind intact. I wish that we could have a birthday party but it is too risky.
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#16 |
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A lot of folks have suggested that I put mom in a home but I just can't do that. Mom and Dad adopted me at birth. I come from Georgia blood. They gave me shelter, food, and safety for 18 years. I owe them a debt. My dad is gone but as long as my mom is alive I will repay that debt. She does not want for anything I provide her a good life.
Yes, it is hard sometimes and I struggle with it but if you think about it our parents struggled with us too. |
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#17 | |
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#18 |
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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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#19 | |
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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! |
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#20 |
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i've never heard of people on SSI getting food stamps. How does this work?
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caregiver, stress |
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