Saturday, July 21, 2012
Outwit, outlast, survive...
I should have expected that something weird would happen on Friday the 13th. But, I’ve always ignored the connotations of bad luck and simply gone on about my business. I didn’t see why this Friday the 13th would be any different. In fact, I had planned the first ever public OARS meeting for that day. I figured that it might be a bad day for caretakers of end-stage alcoholics and that they might need some extra support. I was not prepared for how my day would go from a personal point of view.
The day before 13th, I had received a phone call from the hospice nurse informing me that Riley was going to be removed from the hospice program because he appeared, physically, to be improving. In order for him to stay in the program, there had to be a decline in his condition. There was none. However, hospice does not do lab tests. So they really could not determine that Riley was dying from end-stage liver disease. All they knew was that he was not as yellow, eating well, and generally had a good attitude.
I asked what that meant to me. What would happen next? I was informed that Riley would stay in the nursing home. Nothing really would change except he would no longer be under VA’s hospice care program. OK. That was acceptable to me. I didn’t see a problem.
On Friday the 13th I received a call from the business office of the nursing home. A very pleasant young lady wanted to know how they should proceed with the billing of Riley’s account since VA would no longer be paying for him being a patient. The daily cost will be $250/day which comes to more than $7,000 per month. I was a little taken back, because I thought VA or Medicare would be paying for his continued stay. No. VA doesn’t pay for any custodial care. Neither does Medicare nor TriCare. The only way to keep Riley in the nursing home was for him to be admitted to the hospital for three days. Upon his hospital discharge he could go directly back to the nursing home. The only problem is that there is no viable reason for Riley to be admitted to the hospital.
I explained that I am not physically capable to taking care of him. What would happen if I just didn’t come get him? The answer was that they would keep him, but they would start billing me for the $7K each month plus incidentals.
There had to be some other options. People have elderly family members put into nursing homes all the time. How did they do it?
I was advised to apply to Medicaid to try to get some assistance. But, I’m sure I make too much money for that type of aid. Then I was told that if I used the Medicaid option, all of Riley’s income would go toward the nursing home. I would be left with only income that I had separate from Riley. Well… since I’ve retired, that would leave me with only my Social Security. While I know that people live on less, I didn’t see how I would be able to pay my $1100 rent and my utilities with my $1200 per month. This did not seem like a viable option.
My next step, in the panic of realizing that Riley may in fact be coming home, was to start making phone calls. I tried everywhere in the Veterans Administration but it was Friday and all my calls were going to voicemail. I tried Medicare. I got a real person but the info provided was what I already knew. I called Medicaid and again there was no new discovery there. This Friday the 13th was not turning out very well for me.
Images of me trying to get Riley into the van, out of the van, up the steps and into the house was more like a slap-stick comedy. Then there was the issue of not having a bed for him since I had gotten rid of the feces and urine saturated bedding long ago. How would I tend to his personal needs and still keep myself safe? I wasn’t sure and no one had any answers.
Late in the afternoon the hospice nurse called to tell me that they had decided not to discharge Riley until Friday of the following week. I breathed a huge sigh of relief. I had a week reprieve. Maybe I could get some help from someone.
I walked around the country house and saw all the boxes I had packed in anticipation of moving closer to the kids. I beat myself up over not listening to my gut instincts. I knew deep down that Riley is immortal. I didn’t truly believe that he was never coming home no matter how many times I had been told those words over and over again. Even when I gave my landlady notice, I had a little twinge in my stomach that something was just not right. I went ahead and made plans and proceeded to act on them. I convinced myself that I could trust the medical community and move forward in my life. After all, more than five med pros had told me that Riley would be in a nursing home for the rest of his life.The following Monday I was back on the phone again. I talked to the head of the VA hospice program for our area and even she was confused as to what had happened. She requested his records so she could review the decision. In the meantime, she told me to prepare for his homecoming but that she would not allow him to be discharged until the last day of July. I told her that if he comes home there is a good chance that I will die before him. I asked her what would happen to him then? She had no answer. I mumbled something about how irritating it was that my life is expendable in order to save his – a life that he clearly did not want.
I’ve called the Senator’s office again and they are trying to rush through Riley’s disability application in order for me to have the funds I need to hire a personal care aide. The VA has provided me with a hospital bed and wheel chair. I just found out I can also get other items I will need, like ramps into the house and van.
Today I will send an e-mail to my landlady and ask if I can stay another 30 days at this house. My plan was to stay with the kids for a while, but there isn’t enough room for both me and Riley. And I don’t want Riley around the small children. If my landlady does not agree – I don’t know where we will be living. If I can stay, I’ll have 30 days to find a place suitable for the two of us in the same town as the kids. It will have to be a cheap place because the cost of an aide will quickly empty what is left of our shrinking bank account.
As with every difficulty in my life, I always find a way to accomplish what needs to be done. Sometimes the way isn’t pleasant or what I want – but I survive. I know that the odds are against me right now. I know my health is not where it should be to take on the task of caretaking Riley. I know I’m in danger. Knowing all that means I must do everything I can to make sure that Riley does not outlast me. I am digging through all the packed boxes and looking for my “survivor hat.” I know it is in here somewhere…
at 7:21 AM