When your friends and family don't understand!!!

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Well I have been burned out for a while as I have been the SOLE...n I mean SOLE (no family and new state) caregiver for my mom for 8 years... What I want to say today has to do with when I do TRY to talk to friends about how hard emotionally this is and how desperate I am for a break two things happen:
1. The typical response is: Oh i know excatly what u mean, my kids drain me with their shenanigins, etc.... Then I have to point out but they are kids being kids growing and learning, bringing joy n happiness into your life....Imagine the opposite, There is no joy in the decline of your loved one...I am slowly being tortured by watching my Mother dissintergrate in front of me, and there is nothing I can do to help her....besides doing the best I can to care for her. My only Joy is that I am there for her but it is double edged cuz I gave up everything in my life to do that...can't work or socialize, etc....
2. They offer to help.....I have been told on several occasions "would love to help give me a break, just let them know and they will take mom for a day" But everytime I am in need, they back out! I did actually do it once and it turned into a nitemare....they were calling me couple hours in saying had to come get her cuz something came up and they gotta go, was total BS...if u knew the details, Stressed me out so bad, had to cancel all my plans n go get her! So I haven't tried again!
Thanks for the vent!!!

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This site is so great whatever problem you are having usually some one else has gone through the same and can give advice and most importanly support I will never forget comming here over 4 yrs ago and finding such great people-it gave me the will to continue on the journey of caregiving with some hope that it would come out all right.
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No and and that is what i will recontact them and ask specifics on the "elderly waiver" I am so happy i found this site, the discussions have re-ignited my faith and motivation to Keep digging for get help! I had been so exhausted/burnt out /down/overwhelmed I lost my faith. I feel so much better just knowing I am not alone!! And I had really taken the abandonment so personal and now i can understand better! Yesterday, I actually had a to a friend in beauty school and she gave me a mani/pedifor the first time in 7 years, it felt wonderful, and refused to take any money! Thank you all and Keep the faith!!
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jujubean, I don't know how it works in Oregon, but here what the Elderly Waiver recipient is expected to pay for depends on income levels. My mother pays nothing. My husband pays up to a predetermined amount out of his SS check. Were you specifically looking into the Elderly Waiver program? Was the person who told you qualified to speak about that program?
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Jeanne Gibbs Thank u very much for the info but just to be clear. what I was told is that the cost to have someone come in our home n care for her would be deducted from her ssi income at an hourly rate. We barely get by on what we have ergo our dilemma...but yes i need to keep digging each new contact enlightens me to new info, thank you again!
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This is from an Oregon website:
"What are Medicaid Waivers? Medicaid pays for long term care services in nursing homes. For nursing home qualified persons that choose to live at home or in a residential community, Medicaid will pay for those services if they can be obtained at a lower cost. These are called Home and Community Based Services, Waiver Funded Services, Medicaid Waivers or simply Waivers."
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Jujubean, it sounds like you think that Medicaid is only for nursing home care. Not so. I applied for Medicaid when I thought my husband might need nursing home placement at any time. I've been able to keep him home for over 9 years now, and between Medicaid and the companion program whose purpose it is to help elder stay in their own homes (elderly waiver) we have gotten much help over the years. Dental care, hearing aids (both for my husband), a walker, a wheelchair, a bed rail, an adult day health program, and now that he cannot attend that, a personal care attendant, a homemaker for cleaning, and a medical alert system. Since his SS income is over the limit, we have a fairly high co-pay or deductible for these items. For us, these items and services are not free but much more affordable. My mother is also on Medicaid and Elderly Waiver, and since her SS income is very low, she has no deductible or spend-down amount.

I think it would be worth talking to a Social Services needs assessment worker about what benefits would be available if Mom went on Medicaid and DIDN'T go directly into a nursing home.

Good luck!
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Amen to that Jujubean! Seems like the people who truly need the help aren't getting it and the ones who don't really need it get it handed to them hand over fist. I'm generalizing though. It has to be so tough on you being alone. It is a perspective that I hadn't thought of since my extended family are there, but only one has been constructive to the situation while the others have been destructive. I think you're getting really good advice on here. I get through the day by faith in Christ and knowing that He won't put more on my shoulders than He thinks I can handle. It doesn't mean we don't have to help ourselves though too and it sounds like you are reaching out for help. Leave no stone unturned because there has to be something helpful going on where you are at. Keep us posted. You may discover something none of us have thought of.
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Yes Medicaid is an option,But in our current situation it is not feasible financially and it is a major perm change. We are looking into all options tho...Currently I must have a job prior to save up enough then once we transition i have to have a full time decent paying job close to home which is going to be nearly impossible in this lil tiny town we moved to. Or we wont be able to make the bills n mortage monthly as they will take all but $100 approx of our income to compensate for services!! But again it is an option to work at...Was just hoping for some respite...It seems it is all or nothing!!!! I will repeat myself tho cuz i am so frustrated. If it werent for me the state would have had the burden n $$ for her care the past 8 years! There is way more social services available to people/families who are irresponsiblly having kids they cant afford (pardon me not all are but there is quite a few) than there is for the elderly who have worked hard, paid their taxes n due's their whole life. so I digress...please tell me everything you know bout medicare/medicaiid/elderly waiver...It is like a pulling teeth to get information from some of these agencies!!! Thank you for your support!!!!
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Just what Suzmarie said probably is true the usuall reason people are turned down for medicaide is because they have more money is savings or what comes in for social security or in other forms-she probably does not want to spend her funds but she will never get medicaide until she reduces her funds to what the level of money a person is allowed to have before getting medicaide. I agree even if she protests use her money for home care to give you a break-some elders are very selfish with where their money goes mostly because they want to leave their money for their kids both the ones who care for them and the ones who are too busy to visit or help with their care.
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justawhim, I guess I dont understand. We used mom's money for her care, an in home caregiver. When her money was spent and gone we applied for medicaid. So I am wondering if she has too much money for medicaid, why can't that money be used to her care. I am confused?
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