I am currently caring for my husband in his 7th year of dementia. I don't think I can do this much longer. He is out of it most of the time, getting violent and not sleeping well. They believe he has Lewy Body?? Cannot take antiphysicotics or sleeping aids (they have the opposite effect). I am considering placement soon. No one on these boards talks about how they have handled this financially. How do you live, pay your bills etc. In NY medicaid takes so much of what we have worked for. I am at a loss
Gann, sorry you have gotten to this point. We are starting 9th year since diagnosis this month and I can also say I am tired of it and my husband is not having the problems your's is. I have not but others have. Each state is different but I have heard that they leave you enough for basic bills, not much more. But others seem to do better. I am sure they will be along soon and share their experiences.
Have you contacted Aging and Long Term Care? I have a case manager that I am hoping can help me through some of the maze/red tape. Also, if you can afford it, some say an attorney experienced in Medicaid can really be helpful.
Gann, welcome! I had an elder care attorney that we worked with for 4 years prior to placement. We had everything transferred into my name only while he was still able to agree and sign. Once placement was imminent they had a Medicaid specialist on staff that walked me through the process step by step. I had to do a spend down and used it to pay off our home (car was already paid off) which was perfectly legal. Once that was done he qualified. I honestly don't know how folks do it w/o the kind of help I had. It cost a lot but I cashed in one of his retirement plans to pay for it early on. It was the best investment we ever made. And his money would have been used for his care had we not cashed it in several years before. You need qualified people to hold your hand and walk you through the process. There are horror stories but in my case, it was not painful at all.
Gann, I'm so sorry you are having to deal with this. You don't say where you are in NY, but my suggestion would be to talk with Office for the Aging to get some advice, and also with a lawyer well-versed and up to date in Medicaid. I worked for almost 20 years in Dutchess County as a public health nurse with a caseload that was all Medicaid-billed. So while I'm not a Medicaid case manager, I had to know a lot about Medicaid in NY. We used to tell people that if they had any assets at all, not to go down to DSS without being lawyered up. It is complex, and the interpretations of the regs. can vary county to county...and Manhattan and the boroughs seem to function differently, too.( Go figure.) Your goal is going to be to get him the care without impoverishing yourself, and that is going to be tricky. Many of the folks here have gone through this, and I'm sure will be posting to help. Keep us updated about how it's going, and I'm sure many here will be chiming in with support and advice. Unfortunately, it is a common situation for an Alzheimer's spouse, and you are not alone.
Welcome to my website. It is very late, and I should have been asleep hours ago, so I will answer you more in depth tomorrow. However, for now, let me say that financial issues related to paying for nursing homes have been discussed at length on these boards. I will do some digging to bring the topics up for you to read. My own experience with Medicaid has been well documented in my blogs and on these boards. You have come to the right place for answers and support - while I am digging, I am sure others will come on to welcome you and give good advice.
Hi Gann, I looked for previous posts on this board about Medicaid and found that here are almost thirty threads that have "Medicaid" in the title. (To find them, go to the "Search" function at the top of this page and then search for "Medicaid" in the "Topic".) If the comments on those threads don't seem to answer your question, why don't you post a more specific question here. For example, are you asking for advice on which assets to spend down or are you asking for advice on how to live on a small amount of money? Many people on this site have gone the Medicaid route an I'll bet that they can offer some tips.
Gann, I live in PA,last year I had to apply for medicaid,I had already paid the NH over 300,000.Medicaid allowed me 110,000 in assets,they determined how much I supposedly could live on per month.Medical ins. and bills had to come out of my 110,000,also lawn care,snow removal,upkeep,misc.,and when you're 80+ they add up. And I had 4 hospital stays and 2 ER.visits,and a 900. bill for boarding my dog,and a really poor Med.Adv. ins. plan,your assets get a bid chunk out of them. These are thing to watch out for before you apply on medicare.We had to verify 5yrs. bank statements,any expenditures over 500.,utility bills for the past year,and on and on..Good luck.My husband still gets the good care he got before medicaid.Let us know how you make out.
Remember, everybody, Medicare and Medicaid are two very different animals.
More than one middle-class wife with a nice three-bedroom house and a late model car has told me that it is difficult to maintain that lifestyle on what Medicaid will leave you. You may have heard the gallows humor lawyer's joke about Medicaid, "The good news is that you can keep your house. The bad news is that you can't afford the bills, taxes, and upkeep." When going on Medicaid, it is really time to study up on frugality. I know that people do sometimes downsize...they try to lead a very minimal lifestyle. (Yeah right, easier said than done.)
Definitely see an eldercare attorney who practices in NY. Medicaid laws are different in every state and the laws change every year. You need an expert. In looking at approaches to keeping your estate I saw ideas I never knew about and wouldn't try without a lawyer. Such as spending down by getting a Medicaid approved annuity that pays off in less than a year. As a general rule, as a well spouse you get to keep 1 car, the house you live in and $X dollars (I suspect that amount is $109,000 in NY, some states allow for much lower amounts). But you can spend down by buying a new car, paying down mortgage, fixing up your house or making improvements. But you want legal guidance so you don't mess up.
Gann sorry I have no solution for you. I saw elder lawyer and have assets In fairly trust. ( thanks to this board) We are almost 2 yrs into our journey. My husband was dx at 57 w Lewy body w Parkinsonism. Please post on the board I'm feeling lost I don't know how many others on board are dealings Lewy body. Take are and hoping you find solution .
My husband had Lewy Body. He was misdiagnosed as EOAD for the first few years. I always told everyone he had AD even after dx was corrected just to avoid all the explainations since no one had ever heard of Lewy. Just one of those things that was easier for me.