Thursday, April 2, 2009


Trying to be more reactive than proactive lately. Trying to stay calm when I feel like screaming. Every time I intervene, things become more contorted and confused. Dealing with institutions is insane. They roll in their own fashion.

Alas, the craziness continues. The medicaid qualification (so that the state pays costs) that I busted my butt and stressed over collecting the paperwork, dispursing assets and working so damn hard to get, ended-- when I sold her house. The money from the house became an asset according to the state. We knew that would happen, keeping it was costing too much in taxes, utilities, etc. Renting it out made it an asset too. You get screwed no matter what you do.....

So, now I'm not sure how much the bills are mounting up, who is paying for what, what is happening. The new nursing home doesn't seem to even be aware that she is self pay again... hmmm.... or is she? Is medicare covering her again? Sure wish I knew that..... before I get a bill for $20,000.00 in the mail.

We still don't know whether she was ever evaluated and deemed mentally incompetent, like the doctors agreed they would do when she was just in the hospital. Believe me, she is not capable of making her own decisions. No one seems to know if the medical power of attorney is enacted and is now in my hands or not. We don't even really know what that all means. We hope there are no negative ramifications!

Not sure how anything really works at the new place, how doctor's appointments are handled, who her primary nurse contact is, who anyone is. The social worker handles over 100 patients and seems to have more on her plate than she can handle.

I've been asked to make decisions that I don't know enough about, like is hospice is the right move at this point? The doctors said yes, then the home cancelled the orders... Hospice does not employ physical therapy and some medications which I feel are still beneficial. I received a call stating physical therapy made a decision to not treat her, although I am informed when I visit that she is still a participant.

I don't know how much she is eating, what medications she is on, what her days are like.... it is frightening.

While the new nursing home seems to be taking better care of her (cleanliness, treating her with more kindness, etc) than the last, the communication issue and the distance I must travel to get there (no longer a stop on the way home from work) are huge downfalls.

I asked today if there is a pamphlet, some form of instructions, procedures. I was told they don't have it? So, still in the dark, despite attempts to gain information. Maddening. A care plan meeting was held this week without anyone notifying the family; a note was stuck to her bulletin board but we didn't see it in time. My brother is supposed to be calling to get a meeting with someone who can answer some of these questions.

I'm concerned they are using a heavier hand with pain medication than what is in her best interest. She seems totally out of it at times and on one visit, began yelling out for help like a child, stating that is the only way they will come (not true) She didn't seem to have a grasp on reality and how to ring the bell for assistance. Why the change? Is she too medicated? Not enough oxygen? Blood chemistry gone awry? Who knows????

I'm not sure if she knows that I have been around. It is HARD to stay around. When she is awake, it is disheartening to hear her being so unhappy and dillusional. It is also pretty depressing and solitary to sit there in a silent room while she sleeps and gasps for air.

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