As the world turns...

So, for those of you that haven't read my other two posts, my wife is currently in a Long Term Acute Care (LTAC) facility. At this time, she is medically stable but not progressing mentally. She has Locked-In Syndrome and is unable to move or communicate verbally, but she is able to communicate through a series of blinks or up and down eye movements. These eye movements are not always consistent and she does fatigue quickly. In October, she went into renal failure because of an inability to urinate. She had to have dialysis to keep her from dying. Since October, she has had to be cathetered every 6 hours to keep from having kidney damage. In November, she refused to continue her communication therapy. I asked the hospital if anyone had told her the prognosis, none had. On a very sad day in November I had to tell her that she was not going to have a meaningful recovery. She relayed that she understood. She also relayed that she didn't want to continue like this and that she wanted me to let her go.

Here we are a couple of months later, her friend has flown in from HI to say goodbye and to help me determine whether or not I am interpreting things correctly. I know my wife, but there is something about inseparable best friends that warranted consulting. My thoughts were confirmed that she did not want to live this way, and even if she hadn't been able to communicate it to me, this still was the right decision.

My wife is medically stable now (even though they still have to catheter her), but her mental capacity is not progressing. Because she is medically stable, the LTAC has done their job and it is time for her to be moved to another facility. To honor my wife's wishes, I have spoke to hospice about the possibilities of taking her to a hospice house. Unfortunately, the hospice house is for temporary acute care. The thoughts are if the facility stops cathetering her, she'll go into renal failure and pass within the week, but if she doesn't we need a fall back plan to send her to a skilled nursing facility.

So, the LTAC is still looking for placement at a skilled nursing facility. This search has been ongoing for the past month and a half. No facilities will take her without insurance or Medicaid. She can't apply for Medicaid without being in a skilled nursing facility. All I want is for her to be able to pass in peace with dignity. I have retained a special needs lawyer to help in the process, but even he has come up dry. This is frustrating beyond bounds.... I expect to have a call from them to tell me to come pick her up in my van....