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People seem to be able to get help with respite care from VA and the Area on Aging. VA here in Virginia says the only thing my husband and I qualify for is seven 6 hour days in a 90 day period of respite care. I got that help from VA last year from September to December. When that was finished, I reapplied and was told I must wait 90 days before I could get help again. At the end of 90 days wait, I tried again only to be told I would be put on a wait list and it has been 4 months and I'm still on the wait list. In addition, after the first 90 days in which I received the seven 6 hour days, I learned I had to pay a $15 copay for each days respite I had already received. I also learned the VA pays an agency $150 for each 6 hour day I received while the agency called Team Nurse pays its caregivers $7.75 an hour. Something is wrong with that picture. Also, when I had the scheduled respite with Team Nurse, I couldn't even depend that the caregivers they sent were there on time if at all. Twice I had scheduled appointments which had to be cancelled because no one showed up. even after I called Team Nurse the day before to advise the caregiver they must be on time. I'm not even talking about 5 or 10 minutes late but anywhere from 30 minutes to 1 1/2 hours late. I've also advised VA that I did not want Team Nurse again because they were not dependable. Honestly VA didn't seem that concerned and I find that concering especially considering Team Nurse gets $25 an hour while paying the caregiver minimum wage.


My husband and I are not rich but we do not qualify. They look at our income together, not just my husband's income. So how are people getting 10 hours a week and help from other places free?


We do not qualify as a couple for Medicaid either. Yet, there is no way I could pay for my husband to be in a nursing home. We own our home which is modest and 2 vehicles. Both of us worked all our lives and saved a little which is invested but liquid funds are mainly our Social Security and a little savings. I did consult an Elder Care Attorney and started the Medicaid process. This process is extensive and was hard. You are the ones that do all the work and the Elder Care Attorney we consulted wanted between $18,000 - $20,000. They wanted $9000 up front. So, I wonder if people who suggest Elder Care Attorneys know what they charge.


I guess my question is, are people getting help because laws in their state are different or what? There is just nothing out there for us. Family doesn't help, even the ones that could. They dont even visit or call. I've been at this several years and the last couple have been very confining for me as a caregiver but I'm managing. I wonder if there are others who relate to my situation...

Thanks to everyone who has weighed in on this. I have appreciated all your comments and concern. I want you all to know that I pray for all those that are caregivers out there, I know how hard it is and whether you're a believer or not, no offense, but I am and it's my way of caring and trying to help others.

To MeiMei, you bring up some interesting things for me. My husband served during Vietnam. He told me stories of flying in to pick up soldiers on the ground by helicopter but I have no proof of this. I didn't question him and now he doesn't remember anything. The VA, local office. did say if he was there even one day it counted but they said if you had more than $120,000. In assets you didn't qualify. If you're not already on disability, is there any need of trying to get him evaluated? Other than being hard of hearing, having a pacemaker, being short of breath, some problems getting around and of course, Alzheimers, maybe 6 or 7th stage, I can't say they are service connected disabilities. He did tell a story about having a reaction to penicillin while in service and that he could have taken disability but didn't want to get out and served 4 years.

I have not spoken to VA Affairs. We live in a small town and our only VA office is 45 mins to an hour away with a VA Care Center and Hospital an hour away. I recently took him for a check up 45 minutes away, only to be told his appointment was cancelled the day before. My home phone was out that day and even though they did not reach us, they would not see him. To make it worse, he didn't want to go and fought me the whole way there only to hear his appointment was cancelled. Since I've been told that I might get more help where the hospital is located so I'm trying to get an appointment but I'm told the other VA Clinic must transfer him and they are sending a form to initiate the transfer. Now I'm wondering about the things you said about Veteran Affairs.

The fee the Elder Care Attorney quoted was absurd, thats why I dropped out. What exactly did you go through LegalZoom for? I've reached so many dead ends. I did try Day Care through VA. He was approved but I wasn't impressed with them and he had a very bad experience there. He wasn't able to tell me what happened but he was really upset. He said things mainly about the other people there, not the staff. I didn't try to take him back.

Agency caregivers here are $25 an hour and the ones they send are not dependable. I've ask around for others who are willing to sit with people cheaper and have a CNA guy for $14. He did good the first time but since has also been unreliable.

Thank you and hopefully you can enlighten me in some of those areas I ask about. I keep praying there is something out there.
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Jazzy1349 Jul 27, 2019
Hi Sharon, thank you's to your hubby for his service. Now, if he was "on ground" for even one day during war time, and in Vietnam, ...he was more than likely exposed to "Agent Orange." 99.99.99% of everyone on ground was exposed to this. It is absorbed through the skin, into the pores, and it stays there forever. It will cause birth defects in the children these veterans father, and as the veteran ages, they will start developing "diseases" most simply think of as "getting older." Things like heart disease, or some form of cancer, or a pot load of other stuff. If possible, have him checked, via the VA, or at the least, get him listed as a victim of Agent Orange. Through the VA. And YES, the VA will give anyone the run around about anything. The trick to counter that is to harass the hell out of them. EVERY DAY, THREE TO FOUR TIMES A DAY, CALL THEM. ( maybe his form of dementia was caused by agent orange?) That stuff is nasty. It is also deadly. Take names of all you talk to, the time, date, etc.
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The VA guidelines are the same in all states. By chance has your husband been evaluated for any service related disabilities? You can go to www.va.gov and look at how to "file a claim for compensation", or ask for an updated review. I understand they have implemented a "fast track" review process . There is a ton of information available on that site.

I have been caregiving for my SF for the almost 5 years. First from over 5000 miles away flying back 3 x a year, moving him into an assisted living home, and finally bringing him here to live with us. Unfortunately we work full time his needs grew much too large for us to handle, not to mention getting caregiver burnout. We paid a friend $100 for 6 hours of respite time a week, until we found a lovely place that had a memory care unit which was paid using his retirement funds, SS, and VA disability income. He was still short $2500 a month.

After a couple incidents resulting in a three stays for nearly 2 weeks each time stays in the military hospital ( both Alaska and Hawaii are the only states that do not have a VA hospital, I enlisted the help of our state's office for Veterans Affairs, who were MUCH more helpful than the local VA office.
I provided my DPOA, his DD214 and we filled out a few pages of paperwork that permitted them to act on my behalf. I began the process in Oct. 2018 and after 6-8 evaluations with a host of doctors in April 2019 he was awarded 100% service related disability. He has CKD, CAD, level 7 "Dementia/Alzheimers", incontinence and is deaf.

The higher the service related disability, the more benefits are afforded you. "Boots on the ground" in Vietnam has a whole spectrum of possible disabilities he might qualify for such as Dementia from agent orange - known to cause Parkinson's disease.
He is now in a VA contracted SNF, all of his medicine, incontinence supplies and transportation to the doctor appointments are covered.
When I began he was at 60% for tinnitus and loss of hearing - which most veterans will have to some degree, however he had not been re-evaluated since 2003!
I had to spend a lot of time researching and calling the Elder Care services, Council on Aging, non-profit community service groups in our state. There are day care programs for the aging that might be of some relief for you, some churches have people that will come in to provide respite care for a few hours a day for free.

An elder care attorney can help you with what steps you can take to protect or spend down assets. Our consultation was free, as she billed as pro bono for the VA - we were stunned. Her fee to help US plan for our soon to be golden years was under $2,000. The fees you were quoted are absurdly high. I used "LegalZoom" to create all necessary paperwork applicable to the state he was living in.

Navigating the minefields of the VA system is long and torturous,. You have to be steadfast and demanding. I hope that I was able to help direct you in any small way. God bless you both.
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Reply to MeiMei
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Sharonheart1942 Jul 24, 2019
I replied to you under the question about VA that you answered. Thank you so much for your input and I hope to learn more if you have any more insight for me after reading the post.

You have done amazing for your person especially having to deal with so much and flying back and forth to handle things and check on him. He is blessed in that respect. I just wish there was a cure rather than medicine that mainly prolongs Altzheimers or helps them stay in the home longer. I just don't feel enough is being done for Alzheimers which is rapidly affecting so many.

Thank you again for your help!
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Sharon, what a bugger of a situation. I am sorry that you are having a hard time getting any respite.

Have you considered hospice for your hubby. I don't know what is wrong with him other than Alzheimer's or dementia, which a caring doctor can use to get you palliative care or hospice and every bit helps.

Next, I would contact your county council on aging and get resources from them.

Then I would contact every community charity in your area, catholic charities to jewish services and everyone else that offers community services.

The more resources you have and are utilizing the more help you will receive.

I am floored by the prices from these attorneys, one good thing is the cost is countable for the spend down.

I would use www.nelf.org to find all of the certified elder law attorneys in your area and interview everyone of them that offers a free consultation. I found that not all attorneys that say they are elder law attorneys are really and the clients pay for their education, someone doing it all the time doesn't cost as much because they know what they are doing. Also, ask them if there is work you could do that would lower the bill. Most are happy to have you involved and doing time consuming tasks.

I don't know anything about the VA but they should be able to direct you to a website that can help you understand what is available. I believe that serving during war time gets you different benefits then peace time service.

I hope you find assistance, I know it is frustrating but ask everyone you speak with if they have any recommendations for help, sometimes your local interactions will give ideas about local resources.
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Reply to Isthisrealyreal
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If you were injured in the service, they help...if not you pay for Veterans Nursing home. We paid over $11,000 a month for my Dad in veterans nursing home....
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worriedinCali Jul 15, 2019
This isn’t correct. my FIL wasn’t injured in the service and the VA paid for his nursing home. He paid a copay to the VA of $120 per month.
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When there is a spouse and assets involved, you actually kinda do need a lawyer to help with the Medicaid process. Assets don’t always have to be split in half either.
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You do not have to have an attorney to get Medicaid. Your county social service office have reps who will help you apply for Medicaid and their services are free. It’s a slow process. The Medicaid process does not require an attorney.
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Reply to Becky04473
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I don't know that much about the VA but I do know you are more likely to get help if you served during wartime. I think it all depends on time served. An Officer who retired after 20 yrs is more likely to get help than a person that served 4. VA is not by state. Its guidelines are federal.

Have you really looked into Medicaid in ur state. You woukd be considered a community spouse. Basically, your assets would be split. His would have to be spent down then he could get Medicaid. There is more to this because each case is different. You will be able to stay in the house and have a car. You will not be made impoverished. Your local Office of Aging maybe able to help.
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DesertCatlady Jul 17, 2019
serving during combat times does matter, for instance, hubby was serving during viet nam war, but in europe. but you pretty much have to be disabled FROM COMBAT and it has to be well documented to get any of the big help from the VA regarding long term care, and of course, where you live will determine the kind of LTC youll get...we have nice place and total dumps here in tucson, az. you dont get a choice. once you are in the system ,they make the choice of where you go and how much you are required to pay. it was about 1000.00 a month copay for a local disabled vet we knew and he sat in a shitty diaper all day until family could get there after work...not a damn thing could be done about it. i hope it is better in other places.
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