A newbie on the Alz Assoc Caregivers discussion forums is in trouble. Her husband, not yet 60 years old, was fired from his job, they have no insurance, and she's apparently having a terrible time getting a formal diagnosis of AD to enable them to sign up for aid programs. She's been encouraged to post over here, but I don't see anything from her yet. The full thread is titled:
Please Help! Need Advice!
Can anyone here help?
Here are excerpts from her posts:
I am 53 yrs. old. My husband Steve, will be 60 in July.
He has been having memory problems that I am aware off since he was 52. Four rounds of neuropsychological testing have revealed nothing but a severe cognitive decline. The memory clinic diagnosed him with severe dementia. Our family doctor has put him on Aricept, and in the last 5 years he has been off of work for 2 years on short term medical disability while further tests were done, spinal tap, CT scan, etc...He was just fired from his job for getting 'written up' twice within 1 year for forgetting to do something on the job.
...I feel the medical community he has had contact with has failed him terribly. Like he is slipping through the cracks... His counselor and myself both feel very strongly that he does indeed have AD. Why are the doctor's who matter, ie. his neurologist, and psychiatrist, so reluctant to name this monster that is stealing him away from us? Any ideas would be greatly appreciated. Our children are so frightened and so much help is unavailable without a diagnosis. The neuropsyc testing has been a total waste of time. I feel the memory clinic was most helpful so far in saying he has severe dementia.
...Once again, any advice on how to get a diagnosis or a test that is foolproof would be invaluable! I am aware of the PET scans, but we have no health insurance right now and that is not an option. Please, help!!
...COBRA is very pricey indeed and we currently have NO income. So, needless to say, COBRA is not an opion. Does anyone know anything about AARP insurance? Also, he is a veteran of the 'Vietnam War." He did not serve in Nam, he was in Hawaii, but nonetheless he is a veteran. I have been wondering about VA assistance. I don't think there is any in my area.
...Due to being fired, we are still awaiting a decision on his eligibilty for unemployment benefits.
...our family doctor put him on Aricept twice. He took the samples from the doc, and then said he knew it was for AD and refused to take it. That was 3 years ago. I have a strong feeling our family physicain knows exactly what is going ago, but then the age factor steps in, and they hesitate to give it a name.
...Someone asked if he had an MRI, yes he did. He has also had a carotid artery ultrasound looking for blockages as well as full pulmonary functioning, to see if there was a lack of 02 to his brain. He also had a full toxicology blood study done at my request to rule out any type of toxidity in his body. I honestly can't think of a test that has not been done except for a PET scan which was never ordered and is now no longer within reach. I fear when asking our family physician if this is EOAD, he will simply say, "it could be." I will be no farther along than I am now. Time is of the essence here in getting him help!
...My husband was indeed fired for job performance. He forgot to turn off a machine while working in the Brass department of Kohler Co. Upon his return a year ago, they were given strict conditions for his return, as well as his job restrictions. His job was to require no more than 2-3 steps to complete. That never happened! Also, his counselor requested as part of his restrictions, to be kept informed at least monthly or sooner of any problems or concerns his superiors may have noticied. In a years time, he received not one single written report regarding my husband. He was put off of work again on medical disability on April 14, and had requested vacation prior to that as we were going to FL to visit my ailing mother. While in FL, our daughter received a certified letter from his job. They fired him on April 21, one week after he was put on short term medical disability!!! He forgot to turn the machine off on the night of April 10th. Now how do you fire someone who has been put on short term medical disability??
Thanks also for the link on the VA benefits. I am on the phone first thing Tuesday morning for sure! He does have an appt. with our family physician that day as well. I am going to ask him why they are stalling with a diagnosis.
I have e-mailed Sandie D. alerting her to these boards, and have given her the following advice -
But right now, you have some immediate practical issues that have to be dealt with.
1. Definitive AD diagnosis - "Dementia" is a symptom. Dementia has many causes - stoke; head injury; vascular; but 70% of dementia is caused by Alzheimer's Disease. We have had many, including myself, who have gone through nightmares of incorrect diagnoses for their spouses. It is essential that your husband be evaluated by a specialized Memory Disorder Clinic. Click this link to find a Memory Disorder Clinic in your area - http://www.wisconline.com/counties/WI_memory_clinics.html
2.Call the Social Security Office in your area and tell them your situation. Ask about SS disabiliy and Medicaid. With no income, you should be eligible for Medicaid. But MAKE AN APPOINTMENT to speak with someone face to face.
3. Call the VA and explain your situation - that you need help with medical bills.
I have also e-mailed "Jane" and asked her to look at Sandie's situation. She always has excellent information in regards to Social Security Disability.
If anyone else has any ideas, please post. Thanks very much.
Thanks, Joan. I get so upset when I see someone with problems like this, and don't know what to do to help.
My immediate reaction to Sandie's Alz Assoc post was to get her in touch with Jane ... and then I saw your post that you hadn't heard from Jane since mid-April and her email wasn't functional any more.
Ok here goes nothing. I will do my best to tell you what I would tell a family member of mine to do in a case like this. First and foremost, get the Social Security Disability paper work in process. The amount he is finally awarded will be determined by the first date you apply. Do this NOW, even though you do not have a definite diagnosis. Then after that is in place, go back to the Memory Clinic Doctor. (She did see a Doctor there didn't she?) These Doctors are experts in the field of Dementia. A severe dementia diagnosis may well be enough for the Social Security Disabilty award. They will go by the testing scores etc. Tell the Doctor at the Memory Clinic you will be applying for disability and ask if they will support this decision.
As far as Medicaid goes, the rules are quite different when you are not in Long Term Care as far as the asset rules go. You also as far as I know,are not able to get Medicaid Health Insurance without first having the Social Security Disability, this is what I call a Stink in the system, but that is how it works. They work together.
As for the VA benefits. The Medical problem has to be service connected or else you have to go through a means test. This means that you have to meet certain income guidelines in order to have a priority placement.
For the year 2008 the Net Worth assets cannot be more than $80,000. The annual income is as follows.
0 Dependents no more than $11,181 1 dependent no more than $14,643 2 dependents no more than 16,552 3 dependents no more than 18,461 4 dependents no more than 20,370
You will need to add 1,909 for each additional dependent.
I gave all the above just in case someone else needed this information also.
Again I say to Sadie, Start with the Social Security Disability paper work, it is your most important step right now, the rest will fall in place as you go along.
Oh how horrible, if it were me i'd be looking for a NEW physician instead of the one you are seeing now and request all his medical info/reports for testing be forwared to a new dr. not all doctors are so reluctant to help give a diagnosis or FREE sample meds to start things going. it doesnt have to be a specific name like alzheimers or vascular dementia, i would think ANY form of dementia qualifying as 'severe' should be enough for help,my best to you, Divvi
Divvi is correct, as I said in my post, Severe Dementia, can and will be considered in a Social Security Disability filing.
I am also posting again as I have thought about this off and on all day today. If he files for Un-employment payment, in order to get un-employment payments you must be willing and able to work, that would disqualify him right off the bat for Social Security Disability. Social Security will say if he is able to work then he does not qualify for disability. If he is not willing and able to work then he will be denied un-employment benefits. The system is against him for any of this. I also feel he should tell his primary physician with whom he has been seeing that he plans to file for the Social Security Disability, have all the Doctors understand this and have them help support the claim.
He is definitely not able to work so don't go the route of trying to get him un-employment, if he has filed that he is looking for work then the disability will be out of the question.
Sorry to bear the bad news but it is something they should know.
Jane.
Again Sunshyne, have your friend immediatley file the paper work for Social Security Disability. That is the best option for right now. It seems we are on our own when we are down and out, the paper work is un-real and endless it seems but in the end it will all work out, you just have to be able to wait it out.
I am so sorry to hog the board, but I keep thinking of things. Not knowing the income status it is hard to cover everything that he might be eligible for but with the VA there is what they call the Veterans Pension. In order to be eligible for this you cannot be receiving a service-connected pension. This is called a non-service connected pension. In order to qualify you again have to have been discharged from service under conditions that are not dishonorable, You have to have served at least 90 days of active military service where at least 1 day of that service was during a war time period. If you entered active duty after Sept 7, 1980 you must have served at least 24 months or the full period for which called or ordered to active duty.
Again the income rule will apply for this also. Also in order to qualify for this pension you must be at least 65 years of age or permanently and totally disabled. (anytime they say totally and permanently disabled they are speaking in terms of Social Security Disability rulings or VA rulings. ) SO IT ALL COMES DOWN TO GETTING THE SOCIAL SECURITY RULING AND THEN THE OTHER THINGS COME IN TO PLACE, I CAN'T STRESS THIS ENOUGH.
So many times when people read that they have to be permanently and totally disabled they feel it means just what it says, Not so, It has to be according to Social Security rules. ( Employment disability is completely different, but generally after 2 years even employment disability will require the Social Security ruling.)
Jane has said it well and definitely I agree that filing for Social Security is the first thing you must do. Having a diagnosis is not necessary to file. My husband was having trouble staying awake and he was unable to concentrate. Eventually he had to sell his business, and still we didn't have a diagnosis. His disability was turned down at first but he was later awarded disability and was paid back benefits. There is currently a large backlog of disability cases and it may take time to work its way through the system, but by that time a definite diagnosis should be made.
Jane is also right that you can not file for unemployment and Social Security Disability at the same time.. One sort of cancels the other out ...
Sunshyne, please tell Sandie to long on to this website. There is so much more help we could give if she were here to help us help her. If there is no income in the household that would be above the threshold, in the case of the VETERAN'S PENSION the net worth does not count, as it does when trying to get the medical benefit so her husband could very well qualify for the Veteran's pension if the service time is in line. The net worth in the case of the pension benefit will be determined by each individual case, if VA feels it is sufficiently large enough that the person cuold live off the assets for a reasonable amount of time then of course they would not qualify. It all depends on Sandie D and her answers to these questions.
Oh and one more thing, if the Social Security disability does not come about then once he turns 65 and meets the financial criteria, then he CAN get Medicaid Health care but only after he is 65 or awarded the disability with Social Security and again consult an Elder Law Attorney BEFORE applying.
I will sign off this subject now. Hope some of what I had to offer helps in some small way.
You are not hogging. Your advice is invaluable. We have all benfited it from it. (Sid is getting almost $200 a month more in disability than he got from retirement thanks to your advice!)
I have e-mailed Sandie - I hope she logs on here to take advantage of not only your advice, but all of the information and support for spouses.
I could have gone on with the post for help to Sandie regarding the ability for Va aid and attendance help but you first have to qualify for the VA pension in order to be eligible for the Aid and Attendance and Housebound benefits. If she would only post on our forum here we could ask her question and would know what would apply in her case and what would not. Her husband at this point would not qualify for aid and attendance because he would have to be requiring assistance in everyday living, such as bathing, feeding, dressing and such and I do not think this is true at this point but could be some time in the future and it would also be something good for her to know. Can't really help much if she does not check in here.
My prayers are with you Sun. One correction in the comments, if I understood the message correctly, to you regarding the VA. They do treat AD...my husband has had all his test done by them and is getting his medications free from the VA. He was in Nam and his AD is not service related. He is seen by a PA with vast experience in this area every two months and she is wonderful...she gave us this number to call her with any questions or problems and she always calls us back the same day. If he wanted to my DH could be going to group meetings, but he doesn't want to go.
I "think" but, I am not sure... In order to get VA benefits you have to have served on active duty during wartime. I don't know if your DH would qualify or not, but check it out if you can. My husband was in the service for 4 years and he also has been treated by the VA for other conditions that were not service related.
Judith You misunderstood my post if you understood that the Va does not treat dementia or AD. My post says that if your condition is service connected you are allowed treatment no matter what your income level is. They go by certain assets and household income in order to allow treatment for anything not service connected. I DID NOT SAY that they did not treat conditions non-service connected, I said you have to go through a means testing. Meaning the houselhold income has to be at a certain level to qualify and the Gross net worth also cannot be more than a stated amount.
There are many variables that come in to play when getting the VA benefits. One size does not fit all.
Sorry Jane I misunderstood what you were saying. However, neither my husband or I had to be means tested nor were any questions asked about our financial means. My husband had gone to a neurologist and didn't like him so he decided he would go to the VA and that is where they did all the testing and prescribed him medication. The VA hospital here in California at Loma Linda is suppose to be very good. No questions were asked and he just showed them his Vet card. He also has black lung and they send him medications for that. They also told him if we got a report from his heart doctor stating why the medication he is taking is required because of his heart condition he could also get his heart medication from the VA. They have been very very cooperative with us.
My husband has a very small 10% VA pension. He is not sure if that is why he gets to go to the VA medical center or not.
Judith, There is absolutely no need ever to apologize, we are all here to learn from each other. I am also learning from people here on the board as well as from you. The only thing I can think that would have caused you not to be required to disclose income information would be that your husband would have been a combat veteran. Combat veterans do not have to disclose income information.Also, You do not have to have served in war time to receive VA benefits. The rules are different for different folks with VA, they are placed in what the VA calls a priority group according to the service, the income and such. In fact, a combat veteran can if they wish to disclose income information if they feel it would place them in a higher priority.
As I said before, never feel you need to apologize, always add your input and help us all to learn. That way we can all help each other. The reason it is hard to help Sandie without her being on the board to ask is just such things as you have posted here. Is her husband a combat veteran, is he not, etc.
Thank you Jane for those kind words. Yes, my husband was in combat. And, he told me after my last message on here that it probably helped that he had Blue Cross and medicare that would help offset the charges from the VA. I feel so sorry for Sandie and wish her the best.