Charlie, thank you for the update. I'm glad to hear that your wife is now back at home. It really is a good thing that you are able to retire soon. As you said, being a caretaker for someone with major health problems is a full time job. Incidentally, the term for an endocrine specialist is endocrinologist (no "t" after the "c.") You had me thrown there for a second.
Is your wife currently being seen at a transplant center and has she been listed? (Forgive me if you mentioned this in previous posts, but with so many new members it's hard to remember everyone's details.)
Sleeping/fatigue is normal for anyone with liver disease. I am not end-stage, but still require about 12 hours of sleep to be able to get anything done...and could sleep longer if I let myself.
Our thoughts are with you and your wife. Please continue to keep us posted.
I understand your frustration. You have a lot of company here with that. Everything is based on the MELD score instead of how the person is actually feeling. There are some events/diagnoses that will raise the score...but of course the patient is desperately ill, too.
I had to apply for SS Disability at 60. I had only been able to work P/T since '93. It took them 2 yrs. to approve me. Meanwhile, my aunt supported me for over a year. I had to return to work the 6 mos. or so before I was approved, as she didn't think I would ever be approved, and it was incredibly difficult. Between the fatigue and pain, my focus simply wasn't there. Your wife is indeed fortunate to have medical insurance that will continue. Has she applied for SS Disability? Since she is a transplant patient, she most certainly would be approved. I understand that end-stage patients are now fast-tracked, too. Quoting from Child4's recent post regarding this:
" I was told from a financial advocate that on SSD applications if the individual that is applying is terminally ill, to put in the comments section at the end of the application "This person is a Teri case", and it usually gets the application processed more quickly. They will probably request a letter from the MD stating they have a terminal conditon."
Post Edited (hep93) : 10/18/2009 4:49:04 PM (GMT-6)
Charlie, I believe that being on the transplant list will fast track her. That's considered end-stage liver disease; i.e., terminal. Without a new liver, she will die.
I know that government rules change all the time, but when I applied, the criteria was "condition expected to last for at least 12 mos." That didn't mean that you had to be out of work for 12 mos. before applying, but rather that your illness was going to prevent you from working for at least that length of time going forward. I went back to work P/T while my case was being considered, and it did not affect my case at all. If a person does not make a "living wage," they are considered unable to work. However, since you are married, your income might be considered, too, so that may affect her case if she continued working. It would be best for her to retire. There is some loophole about being married with too much income. I know PG and her husband were penalized for this.
You can get the application going by phone. Then they will send you paperwork to be completed. TIP: Make copies of everything, including completed forms, before sending to SS. They will send even more forms before it's over and you will have copies to refer to. If they DO deny her, immediately get an attorney. I actually feel certain that she will be approved the first time around, as she is a transplant candidate.
Thanks for the information, if I am interpreting their website correctly she has to call and make an appointment for the adult disability interview, and our paperwork needs to be in order for the interview process. I have downloaded the check-list of documents to have available. She is simply not able to work now, even part time, so retirement is her only option in order to keep you health insurance. Once I retire to social security and a gov annunity the 1st of the year, hopefully our income won't get her penalized. I fully understand the importance of hiring an attorney immediately, if she is denied. Her liver specialist has even suggested she retire, so I know she will be on our side regarding her health concerning disability benefits. The following was cut and pasted from the SS website frequent questions link:
Why is there a five-month waiting period for Social Security disability benefits?
The five month waiting period ensures that during the early months of disability, we do not pay benefits to persons who do not have long-term disabilities. Social Security disability benefits can be paid only after you have been disabled continuously throughout a period of five full calendar months. Therefore, Social Security disability benefits will be paid beginning with the sixth full month after the date your disability began. You are not entitled to benefits for any month in the waiting period.
The only thing we know to do is apply and see what happens, at this point we really have nothing to loose.
Charlie, it's not necessary to have the medical records for the phone interview, if you know the dates and places of hospitalization and the reasons. However, it does speed things up if you can send them the medical records with the written forms. Just be sure to make copies for yourself. Also, she will be assigned a caseworker with SS and all info should go to him/her.
Charlie, thank you for the update! I'm so glad that they are expediting her application!