Why does it have to be so hard...

Sara has actually had a pretty good day. Nurses reported that she was a lot more attentive today and communicating easily with them. I know it makes their job easier when she works with them. The only thing that concerned them today was her heart rate jumped up this evening and she seemed to be in pain. She wasn't, though. Just needed to go to poop... Don went up and saw Sara today for me, as I have had an extremely hard couple of days.

That's where the title of the post comes in...

As I've said here, I'm trying to bring Sara home. There is so much stuff to do for me to even see if that is feasible and more to do still to make it happen. I mentioned the program from MediCAL that would pay for 24 hour nursing care. Well, on thursday last week I got a call from a Kaiser discharge planner and notified that I had to find a nursing service to work with. She faxed me two pages filled with services to call. I started calling right away. I also jumped onto Craigs list and started looking for a house. Yesterday I got a call from the same discharge planner, being quite terse with me that I had not picked a service yet so I could bring Sara home. I told the planner that I still wasn't sure we were going to be able to do that, and I'd need to move too (which I told her on Thursday last week, also.) Well, she let me know that she was "doing me a favor" by even faxing me a list to work from and that she needed me to pick an agency by the end of today. That threw me into a tizzy, as I have been calling agencies. I think the potential nurses to care for my daughter ought to take a little more than a dartboard selection... But, regardless, I left work yesterday afternoon and looked at a couple of houses and firmed up an appointment to meet with one of two possible agencies today.

The house is proving to be a bit challenging - and its going to roast me financially for deposit and moving expenses, and clearing this apartment. And I have to explain about my newly disabled daughter...and then about the dogs...yadda yadda. I've been playing phone tag with a property manager that has three potential properties. And, my credit worries me. Well, it doesn't worry me - I know it sucks. How a property manager would regard my credit is what worries me... ugh. Decent income - bad credit. Hmm. No negative comments from the peanut gallery on who caused what, blah blah blah... I'm venting my thoughts...

Well, today, in the midst of interviewing a nursing agency I get a call from the discharge planner. She was quite displeased that I had not called her yet, at 1020 in the morning, to give me the agency that was going to care for my daughters nursing. She threatened me with a denial letter if I did not provide a name for her by 4pm today. A denial for what, I did not know at the time. But I was shocked that this woman was being so rude with me. The person I was interviewing could hear her from my phone and was also shocked.

After completing my meeting I drove home in tears, scared about what was going on, overwhelmed that I was feeling harassed by this woman, and so uncertain about how to handle everything on my plate. I pulled into the driveway and nearly passed out. In the driveway was a car, identical to Sara's, parked where she always parked. For a split second a flood of disbelief and then relief washed over me "good, its all been a bad dream. Sara's home. I have to tell her about this..." I pulled into the garage and shut off the car. When i got out I walked over to the station wagon and then it was obvious it was not Sara's. It could have been so easily. Identical car. That's when I knew that the universe was just trying to mess with me. And I felt dizzy and tired, my head hurt, my heart hurt, and all I could do was go inside and go to bed.

I walked up the stairs and the tears started to flow. Why does it have to be so hard to try and take care of Sara? Why does it have to be so hard to get through a day? I can take the mechanics of how to care for her traech, stretching her, working with communications, even all the body care. That doesn't phase me, actually. I can take the uncertainty of how to get her around. I can even take the fear of something unforseen going wrong and needing help. What I can't take is when someone with a limited view of the big picture takes the frustration of their job, or their idea of what I am or am not doing to help them do it, and delivers it back to me with threats and rudeness. I just don't understand that. I'm not that kind of person and I just don't understand that.

I called the ICU and asked them to page the social worker assigned to Sara's case. When I finally got a call back from her I opened up and told her everything that was going on. I didn't "open up" as in a can of whoop ass, it was emotional. I went to tears again and kept apologizing to her for crying, but I was just overwhelmed. I told her what the last 24 hours have been like and what my perception of all this is. She listened and offered some explanation, with a promise to work on a solution and call me back. She did answer my question as to what kind of denial such a person could issue. Apparently, if there is a viable care alternative for Sara, and I refuse it, then they can issue a denial letter and basically void the authorization for her hospital stay. That would make the family financially responsible for her care and then her insurance could be terminated. Well, I told the social worker that there wasn't a viable care alternative offered or refused, and I didn't understand why this woman felt there was. Apparently, when they told me of a possible program with MediCAL, this woman decided that this was the only thing to work on and stopped looking for a subacute bed for Sara. I told the social worker that they never should have stopped looking. Hell, they never should have made ME look for a subacute bed for Sara in the first place. That is what started this whole MediCAL and home thing in the first place. The discharge planner faxed me a list of subacute facilities contracted with Kaiser and told me to find one with a bed. That is her job. But, I called them all and ended up calling the social worker frantic that there was no room for her anywhere.

So, she told me that if Sara going to subacute was the primary discharge goal (which it should have been all along - THEY changed that) then Kaiser could not issue a denial letter, unless I refused to allow her transfer to a facility they found. I told her I wouldn't do that, unless it truly was inappropriate care for her. I told her also that now I feared that the discharge planner would retailiate against us and put Sara in the first nursing home bed she could find as far away from home just to get rid of her. I was assured that no retailiation would be coming, but she did understand my fears in that regard.

This is turning me into one big physical and emotional knot. I am totally willing to do whatever I have to for my daughter. And YES, I want to bring her home. Its all I think about sometimes. It is the only way I can get her access to the only treatment which MAY help change her outcome. She's not ready for intensive rehab, so why have her languish in a nursing home with old stroke and dementia patients until she is? I'm fully intending on setting up a therapy room in the house so we can rehab her at home until she can withstand inpatient rehab. And she would still be able to rejoin her social group, and be surrounded by her family and have access to her animals. All these things are important. Just like with everything else, it takes time to put it all together.

Meanwhile I'm working full-time, consulting on the side, making phone calls working on all this stuff, driving two hours each way to Sacramento to go see her, leaning on my boyfriend for moral support and the occasional kick in the ass, spending 2-3 hours with her and coming home, sleeping for a few hours, waking up, spending 30 minutes or so with her brother getting coffee and taking him to school, and repeating the cycle. I'm not sharing this for sympathy. I'm actually proud of myself for being able to handle all this as well as I have. (and grateful and thankful for my job - where I get to actually fix things and help others)

I'm just having one of those unfortunate days where it all comes crashing in on me. My depression gives way and the hard stuff pulls me under the surface, and the lump in my throat is holding the tears in and the water out... I can't breathe... so I close my eyes and sleep...