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That leaves the spouse struggling just to survive.

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Did you fill out the community spouse allowance calculation? Sit down with the financial aid person and present your needs.
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That was not mentioned, although I did express my concern saying "how is the spouse supposed to pay the bills without going broke' There was no response to that question. I realize it Is expensive everywhere and will try to keep him home as long as possible. Very scary times. Thanks for the info, I will check that out.
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Contact your VA disability rep as soon as possible to file for Aid & Attendance to help with your living expenses. Do it ASAP because the process is a long one.
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I have been trying to get Aid & Attendance since 2011, have been my husbands caregiver over 20yrs, I am 81, my husband 86. He was a career man and is 100% disabled. I have a large file of avenues sort for help, it seems that since I am his spouse and still on two feet no help is available. He falls under the Vietnam era and should still considered under the WWII Vets Aid & Attendance. I hope you have better luck than me. Silver threads.
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MsPatS-I hear you sister! Both my husband and I are 57. He has Alzheimer's. I wonder this all the time. Yes, I got my assets protected, but I'm not sure that I will be able stay in my home without his pension and SS. Which of course he will need for his care. Basically we are f&*ked. After over a year of asking this question I finally got and answer from my doctor and the Alzheimer's association. Yes, people are selling their homes and moving to lower costing states, or out of the country all together. Not sure why the life of a person with dementia is more valuable than a working, contributing member of society, but evidently it is here in America. We are under 65, so there is really no help. Most assistance out there is for seniors. If you are over 65 you might have a better chance. I hope you find some help.
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To the people at the age of 57, if one of you has Alzheimer's you should call up Hospice and be evaluated. They will provide help. Even though you are not yet on Medicare, you are considered disabled and can speak to a lawyer about disability. SSI. I don't know much about this, but would suggest you seek an attorney's help or legal aide for your state, maybe see if AARP can help you.
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You do not need an attorney to get Social Security disability. All you need is a form filled out by your doctor stating you have a "terminal" illness and/or another disabling illness and can no longer work. Those persons under 65 are eligible. Talk to social security. I got it at 53 yrs.
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I know couples where the husband is in long term nursing with Medicaid. These women did not lose their homes. You need to talk to Social Services to see what ur husband is entitled to. Just a question, aren't VA homes free of charge for a vet?
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Without knowing your citizen and state and I can only offer very generic replies. First I would contact your local Dept for Aging and see if your loved one is eligible for assistance with any of the services for which I you are currently paying out of pocket. Second, contact your local elected representative and see if their office can make any suggestion.

Other resources that you may want to check are:

Hidden Heroes
https://hiddenheroes.org/resources

Rosalynn Carter Center for Caregiving
http://www.rosalynncarter.org/resources/

National Alliance for Caregiving
http://www.caregiving.org/resources/military-families/

Good Luck
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I'm going to take my dad to live in Thailand. He is currently in a VA long term facility and we will go in a few months. Maybe the first time will be short, but long term, it will be very cheap. I do have a plan for more....
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There are two types of VA long-term care facilities. State VA Nursing Homes and VA "Community Living Centers".

Admittance to Community Living Centers is usually reserved for those with service connected disabilities of between 60% and 70%. A co-pay may be required if the veteran's income is above a specified limit.

State Veteran Nursing Homes will generally accept veterans with non-service connected disabilities and will expect the veteran to pay all of their income to the facility with no dispensation for a spouse living at home.

It is for this reason that Medicaid is the preferable solution if there is a spouse who does not have adequate income of their own as Medicaid does provide relief for spouses of Medicaid recipients.
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Arlene21....
Social Security Disability (SSDI) can be applied for at any age. Once qualified, Medicare will be available two years later.
Medicaid is available to those under the age of 65 if deemed disabled by Social Security standards even if not receiving SSDI.
Your best bet is to contact your local Area Agency on Aging (aka Aging and Disability Resource Center). Every county in the US has one and they act as a "clearing house" of sorts for all federal, state, and local resources available for the aged and disabled. They will be able to direct you to various available benefit programs and their eligibility requirements.
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I am wondering why this was not investigated first. It is obvious that he cannot afford to be in the VA facility. Leaving his wife in proverty is not an option...so, this is not something that should have been done in the first place
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Appreciate the feedback. My husband has a good income and I am not complaining except that the VA is not considering the spouse at all. At 90% taken from all sources living on 10% the spouse would be lucky not to go thru all savings in a year. No break is given from state or Federal taxes, or the cost of staying in the home for the spouse. I am not sure how soon I will have to sell the house and find cheaper living conditions. If things were reversed would they just take 90% of my income - now that would be a bargain.
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MsPatS, then you have him apply for Medicaid. Medicaid will give you a CSA= community spouse allowance. There ARE tax breaks on property tax for disabled veterans AND your tax preparer will establish a large deduction on your federal tax return on Schedule A. PLEASE see and elder law attorney.
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The VA does lets you know that "income and net worth cannot equal or exceed $80,000 and b) countable income cannot exceed $11,180 annually." If you do not meet that than you pay the 90% of income from all sources for your care. It is expensive everywhere I just thought (wrongly) that for those who served in war time they might not have to pay so much.
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