Hi my name is Karie. I am 35 and my husband is 48 and has been diagnosed with dementia possible EOAD. He has had to go on unpaid medical leave because he wasnt able to continue at the normal capacity of his job. I had to resign from my job in order to take care of him (basically everything) because he cannot recall information and doesn't drive. We are in the process of a short term disability claim, but thats not going too well. I am not sure where to go from here ... doctors aren't very cooperative and if I don't find some sort of financial solution we could possibly lose everything. My husbands grandfather and mother both passed of this. I don't see why its taking so long for a resolution ... diagnosis. He's had blood work, MRI's CAT scans not sure what to do at this point. in addition I'm trying to help my daughter 15 who has an illness herself. As my husbands disease progresses its getting even trickier. If you know of anything that can help please let me know. Thank god for this website. I thought that I was all alone.
I'm new to this process as well but have a few questions for you. Is your husband a vet? If so, the Veterans Administration may be able to help. If he has active duty, they may be able to do more than if he didn't. http://veteranaid.org/ OR http://www.veteranaid.org/apply.php
Have you talked with an elder care attorney. You may be able to qualify for medicaid. Many attorneys charge by the hour and can get expensive. Others don't, it is a one time charge. It varies based on your location. http://www.naela.com/
The Alzheimer's Organization has a 24 hour hotline. They are a wealth of knowledge and help. You can call them on 1-800-272-3900.
Lotsa Helping Hands has folks who can work together to get help they need. You can find more information at http://www.alz.org/we_can_help_lotsa_helping_hands.asp
You can get information on the alzheimer's chat rooms at http://alzheimers.infopop.cc/eve/ubb.x. Click on the chat room at the top. I find that people tend to get online between 6-7:30 PST.
There are many web sites out there that have information. This is a great forum and I know others will come through with ideas for you.
Welcome to my website. You will find a lot of support and information here. The beginning IS overwhelming, but we have a lot of resources to help you. Please log onto the home page of this website -www.thealzheimerspouse.com- and look to the left side. There are three topics I suggest you begin with - #1 - Newly diagnosed/New to this site; #2 Early Onset Alzheimer's Disease; #3 Finances; and #4- Understanding the Dementia Experience. When you get a chance, scroll through the "previous blog" section. There will be many topics you can relate to.
You can also go to the top of the page of this forum, click "search", and type in "social security", making sure the "topic" circle is filled in. There are 3 or 4 topics on social security disability. You can also do a search for EOAD (early onset Alzheimer's Disease), and quite few topics will come up.
I am sorry you have to be here, but very glad you found us. Please be sure to check in to the main page of the website - www.thealzheimerspouse.com - as it is updated with new blogs, news updates, and other important information every day.
Karie, it was such a joy for all of us to find this site. Joan has done a wonderful job. There are many people on this site who can give you information about Social Security Disability. I recall that one member was able to complete the paperwork herself quickly and painlessly. Over the next few hours, you will probably get a wealth of information from many men and women who have been through or are currently going through what you are. There are also a few very young people like you. Find the "what are your ages" site, and scan these. Then you can direct questions specific about young families to these people.
Karie, I'm no pro, but I have done the Social Security Disability Application process for myself, my Hubby and coached a Sister-in-law for her husband. From what I understand they have streamlined the processing so an answer comes through quicker, but there is still a 6 month wait from the date of application before payments begin. They will do some of the application over the phone. They will ask for "releases" to get records from the Drs., etc. The 2 key things I can tell you are: 1. Give them every stitch of information and documentation you have for as far back as possible and 2. Do not miss any deadlines they set. Turn around every request for documents, information, signatures on 'release' papers as fast as you can. If you miss a deadline, you have to start over and you lose the starting date from your original application. If for any reason you were to get a Denial, you can appeal, and everything still hangs on that original date, including payments as soon as he's qualified. Oh, and one other thing, the Soc. Sec. Admin. will likely set up his checks to come to you for him and you'll have to report each year on the use of the funds (not a big deal). My Hubby's checks are direct deposited to a savings account in his name, which I co-own. I transfer the funds to the checking to pay the bills. I explained to him that they have so many people to make checks for who have retardation, or mental illness, or other thinking trouble that they can't sit there and decide that this one can handle his own money and tht one can't, so they do all the checks for those people the same. Get on this ASAP if not sooner.
Karie, Do any of your husband's relatives have EOAD? You may want to have your husband tested for the early onset ALZ genes of PSNI, PSN2 or APP. If he has a gene, it will make it easier to get disability.
Hello again, Karie ... I've been busily answering you under the "EOAD Issues" thread, until Mary in Montana told me to get over here. Check for my earlier posts on getting a diagnosis there.
Re the finances, what I'd done so far is:
Did you or your husband serve in the armed forces? There are a number of programs for veterans and their dependents. See the tail end of the thread "PTSD and AD" which is pretty near the top.
We also talked about several different financial support programs on the thread "Any Suggestions", which I've brought to the top for you.
On another thread, Jane said this regarding a spouse in a situation similar to yours:
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 to the Memory Clinic Doctor. 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 ... as far as I know, you 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.
...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.
Anita41 responded:
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 ...
Welcome Karie, I am so sorry you have the need at such a young age, however, as everyone has mentioned you will find valuable information here. I had a phone interview first, then completed the papers myself. As others have mentioned don't miss any deadlines, also my husband was required to have a medical & mental evaluation even with all the medical records from Primary physician & Neurologist. He was approved on our first try.
My husband is retired military. Yes, he's had neurological testing. He's also postive for the gene. Both his grandfather and mother both died of Alz. 70's, 60's respectively. Yes, its terrible to have this issue at our ages but somehow we'll make it we always do. I love him very much and hopeful I can ease his pain somehow in the process. Thankfully I've worked with many alz. patients and can deal with the day to day issues. Its just the financial issues that worry me. Not sure I can do much right now because he is on FMLA from work at the present awaiting a decision on his STD. I hate being in limbo. I hope there's someone else out there thats young who I can relate to .. maybe we could go through this together. I did look in the ages category ... I think I saw one name ... I believe it was Catherine. Let me know if someone wants to talk. I love someone to chat to about this.
Karie, you are about the youngest member we have, BUT there are caregivers here with small children who are dealing with very similar issues to the ones you deal with.
You are free to just chat. Believe it or not even a caregiver dealing with an LO in their 80s will not just understand, but will also be able to offer good advice.
Some of the legal and financial issues are things you need to do NOW. Make sure you've got wills, durable powers of attorney, patient advocacy paperwork done and out of the way. You need that for both of you, which might make getting him to the lawyer's office easier.
In addition you should get power's of attorney from the bank done now. In addition get paperwork from all the insurance companies done so you can talk to them and do those now. If he is on Medicare get their paperwork done now as well.
When you get more settled on his work issues, that is the time you need to work on financial issues. Some of them can't be worked on for a very long time, but others should be done ASAP.
Feel free to vent. Venting is good. This is a safe place to do it. And make sure you take care of yourself as well.
I am new to this, too. My husband has EOAD and was approved for SSDI within 60 days of our application...no appeals, no attorneys. It is not a difficult process, but can be frustrating. I have a background in social services and have worked for the government, so I understand and speak the language of "government-ese". I recommend you apply on-line, but print every page...you will have to print each page as you complete it. Don't worry about completing the application in one seating. They will give you a security code to return to where you left off as often as you need. The biggest, most important thing to remember when completing the application is to write as much detail as possible about every question with an emphasis on how the AD affects your husband's ability to function in the work place, at home, in society, his self-care, etc... Don't worry if he doesn't have deficits in some of these areas. The reason most people get denied the first time is because they haven't used the special language Social Security Administration wants to hear...how the disease affects his ability to function. I did this not only through the application questions, but through a diary I kept about his progress. The first few pages summarized what I could remember from the previous 3 years prior to diagnosis. Mostly behaviors that I could tie to a specific date or event. I picked up the diary from the time it really clicked something was terribly wrong and we needed to pursue medical help and through the date of his diagnosis. Since the diagnosis I tried to make at least weekly entries, daily when possible. My husband was still able to work at his job for several more months after his diagnosis, but when he could no longer work full time, I submitted the application. I know everyone says hurry up and submit the application, but I took a little more time, gathered a lot of evidence and the diary. While I submitted the application on-line, I made an appointment with our local office to bring in the supporting documentation (medical records, signed releases, diary, letter from his employer, etc...). I think all of this contributed to his rather quick approval. Someone I met through professional contacts had helped people get approved in 45 days. She wrote up a guide for quick approval that she shared with me and has given me permission to share it with anyone. If anyone needs this info, please contact me through Joan. It is good info, easy to follow and makes a big difference.
I forgot to add that AD is considered an "automatic qualifiying disorder" according to the SSA's Redbook. These are disorders/diseases that will disable a person for a period of at least 12 months or is considered a terminal disease/disorder. Despite this classification, you still need to prove his AD affects his ability to function. It is not good enough to simply say they have an automatic qualifying disorder. For example, Cancer is an automatic qualifier, but not all people who have cancer are disabled. So much depends on the type of cancer a person has and how they react to their treatment. Thank God not all cancers are terminal any more. Some people can even have uneventful chemotherapy treatments where they don't get the horrible disabling side-effects. I have a close friend who never missed a day of work throughout her chemo and radiation. Others, as we know, are not so fortunate. That's why SSA wants to know how the disease affects the person. I am sure the rest of you feel much the same as I do...AD affects a persons ability to function in so many ways...I just wanted to scream..."Well, DUH!!!!!!" But, I held my temper, jumped through the hoops, spoke the language and it paid off.
Karie, Since you are in OK, check out Baylor College of Medicine in Houston. My BIL, who also has EFad, saw Dr. Rachelle Doody for a number of years. He still goes to Baylor but has been seeing one of her colleagues who my SIL really likes. Dr. Doody is one of the top scientists in the AD field. The Baylor Medical Center are experts in EOAD. The below link has the clinic on it.
I thought I was young (42) dealing with my FTD husband who is 58. I have been inhaling and exhaling since February ( the diagnosis) because my husband is a retired vet we have filed for benefits there. Because he is a state employee Long Term Disability will cover him until age 70 70% of his annual income. Right now he has had over 1 year of sick pay and vacation pay so that is what we are living on now, once that runs out his job has a pool of donating their time to him, which most people if they can't use the time to take off and will lose it if it goes in the next fiscal year,they are allowed to donate to him ( this is 180 days/6months limit) This indeed has been a blessing last but not least his employer is keeping not only him covered under the insurance policy but me also. Today I received a call that it is open enrollment and they encourage me to add my daughter who is a teenager on. I have been offered employement after looking for 9 months, I have no idea how long I can work since I was told the same thing my husband needs a 24 hour caregiver. I faxed his LTD froms last week and I rec'd a call yesterday from the rep. ( Prudential) they are fast responding and since I sent over 100 pages of medical/lab documents she only has 1 more form for me to sign getting certain docs from the psychiatrist, she stated that the HIPPA form doesn't cover psychiatry a separate form has to be completed for those records. Check out HR where he worked you be surprised of what is out there for help in this situation. Good Luck
I'm sorry you need to be here but glad you found us. I thought I was one of the youngest here at 44. My Dh is 54, diagnosed 2 years ago. I have 3 young boys (10, 8 and almost 3). It's so hard with LO's so young, and children too. I was lucky with SS benefits, quick diagnosis. I applied and got accepted right away. I can't imagine with the 3 kids and working full time how it would be if I had to fight for benefits. Senior Services pays for DH'S day program and my insurance is covering a care worker for 2 hours a day. I feel fortunate for that.
lately, I question whether DH would be better off in a NH, although it's pointless. I can't afford that and make too much salary to qualify for Medicaid. Monday was a holiday (Columbus day) and there was no one to care for him. New job and I have no more sick/vacation time left. Fortunately, my sisters could watch the kids, but I had to leave DH alone. He has become bowel incontinent in the last few months and had a pretty gross "episode" in the morning (I had to work 11:30-8). I helped him in the morning, gave him Immodium and thankfully, no more episodes during the day. But it made me realize that he might actually be better off at a facility. They could care for him 24/7. I cannot. But it's pointless to obsess on that, I guess, since I could not afford it.
Anyways, I wanted to welcome you and let you know you are definitely not alone. AD is definitely not an "old person's" illness (no offense to the older folks among us). I hope that the medical community and society at large will gain a fuller understanding of the scope of this horrible disease in the coming years. I recently heard of a man diagnosed in his thirties, and I know one of our members lost his wife in her early forties.
I hope you'll keep in touch. Please know that you're not alone.
FTD, since it is open enrollement, I would add the daughter. you are going to need the health insurance to continue if she is not covered under your TRICARE Prime. It will be impossible to get insurance later on. Also you might need to get the COBRA payments up if they are not covered under the LTD...you have found a great website here. everyone is great and sometimes you need to vent to someone who understands. Phyllis
.. and keep up the immodium. It helps. And read up on incontinence, with us and with Bigtreemurphy.com. Not what you want to deal with before you go out for 8 hours of work, but you do what you have to do.
Welcome Again Karie, If you have not noticed I keep the stats on both ages of loved ones & caregivers. If you feel comfortable you can add your ages, if not, that is perfectly okay.
Hi Karie, I am 45 and have been living this night mare for about 3 years now but my husband was only diagnosed this summer and we are still going through the process of neurology appointments, tests etc. If you want to talk please feel free to email me. ukgrl08@lycos.com