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.
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