And So it continues...

We are so frustrated right now!!!!

The minimal amount that Bill is receiving from Social Security each month is not enough to pay for an assisted living place. Not to mention that it will not pay for an apartment and allow him to eat each day, too. 

So, it was recommended that we try for Medicaid because that will cover the additional costs for an assisted living place. Sounds easy enough. But guess what! There is more than one type of Medicaid. He is covered under the first type that helps to cover additional medical expenses but not the second type that helps to pay for an assisted living facility.  Based on the initial assessment done over the phone, Bill doesn't qualify for this type of Medicaid. The bright spot is that they have agreed to send someone out to personally assess him and see if they feel he might really qualify.

So, an interview has been set up. But how are these people going to come out and assess him in about an hour? It isn't that he needs constant monitoring but he does need some coaching to do things like shower and brush his teeth each day as well as some assistance in eating something more than a tv dinner from the microwave. I mean, he burns his frozen waffles when he puts the in  the toaster more often than not and he has burned his eggs and bacon on more than one occasion. So eating is something that he needs help with and Robert and I cannot be here all day to make sure that he is eating well and not burning the house down while he trys to make it. But, nobody can make this determination by spending a few minutes with him. It takes a day or longer to really see and understand what all of his issues are. 

We have already gone through this whole thing with Social Security where they have determined that because of his physical as well as cognitive issues, he cannot keep a job. So, why is it so hard to determine that he needs the assistance as well? A big part of the reason that he is still with us is because he cannot live on his own by himself. He needs somebody around that can check on him each day and make sure that he is okay. And be reminded to change his clothes each day. But it is stressful for Robert to have him with us day after day. Especially when he follows Robert around like a lost puppy and doesn't seem to like it if Robert wants to spend time with me and not him. And Robert doesn't need the additional stress in his life. Robert has the same disease as Bill and the stress can make it worse. So, he needs to go. But finding that place is getting more and more frustrating each and every day.

I expected a long and drawn out process when we started all of this, but we are nearing the two year mark since we began this whole process. To me, that seems a bit excessive. And gets more and more frustrating by the day since we cannot seem to find the solution to this problem. Because, if we are honest about, even Bill is tired of living with us and wants to be out on his own. Even though he understands that assisted living means that he will not be totally on his own, he feels he will have more independence than he does here. 

But again, we have to wait on somenone else to make a determination about Bill's condition when that person really has no understand of the disease that he has and how it affects him. If the people making the decisions about the type of care a person with HD needed, then we wouldn't have to jump through this million and one hoops to get him the support and care that he needs. Understanding the disease and how it affects those living with the disease should make the decision that much easier. So, again we are waiting and praying that another person will make the decision we want them to make - the decision that will help Bill get the care he needs.

I'm Confused

Can I just say that this whole Social Security thing is one of the most confusing things in the world?!?!?

It seems that every other day we are getting a letter in the mail about a change in some way to the original benefits that have been awarded to Bill. And each more confusing than the next. One day, we get a letter that says he is getting a certain amount of money and so much in back pay for the next year. We think great! This amount will be enough to afford a place that costs this amount and make a plan to look for something in that price range. But wait! Two days later, there is another letter saying the amount that he is going to get is actually more so we look for a little nicer place. But then a few days after that, there is another letter that says they are reducing the amount for one reason or another and now he is getting less than what they originally told us. No joke!

Then, for every letter that they send, we get two. One addressed to Robert in regards to Bill and one addressed to Bill. Considering they are sent to the same address, why not save a few trees and send only one? Plus, make up their minds and decide on the actual amount they will be paying him and send only one letter instead of a different one every other day.

As of right now, we cannot make plans for his future because we don't really know what his incoming money will be each month. It is very hard to make plans about where to live when you don't know what you will have to live on each month. Plus, to make matters worse, he is supposed to spend all the money in the account every month and not have more than just a few dollars left in the account at the end of it. But, on the other hand, he needs to save some money up as extra so that he will have money for all of his needs beyond the roof over his head. I mean, he does need to eat and take a shower on occasion, right?

It is getting to the point where we are almost afraid to even check the mail because we are worried we are going to get a letter saying the SSA has changed their minds again and they aren't giving him anything. After all, one of the letters they sent us said they had reduced his back pay because they show he received income up until July 2012. Unless he is walking to a job when we are not around, I don't know where that came from. The people at Social Security say it has to do with the fact that part of the money comes from disability income and some it comes from supplemental income. They both work together to pay so much each month and the share of each seems to change frequently. Bill gets very confused by all of it. We get confused by it, too. Robert has made several calls to the social security office for explanations. Some days, he hangs up and understands it all, but he may be confused by what he hears the next day. If it wasn't for Robert being here to help, I am not sure Bill would really know or understand what is going on. If we are confused by it, imagine how it is for someone who is not of complete sound mind and doesn't have family to help muddle through it all.

And, that doesn't even cover the whole Medicare/Supplemental Insurance and Medicaid side of things.  We are still trying to figure that one out as well.

I guess the  bright side is that learning all of this now will be good for a few years down the road when we have to start this process for Robert. But today, I am quite confused,