[Managed Long Term Care: This is not private pay care; it is a system, eg., the state, that delivers services so that the chronically ill or disabled can stay in their homes]

I keep thinking about yesterday, rolling the conversation over in my mind; as a result, I initially I went through hours of guilt. I feel, I perceive that I wasn’t a “good girl,” that I was  disrespectful, out-of-line, inappropriate.

I was angry and frustrated.

I had run out of ammo.

I was assuming that the voice of reason would step in and smooth this all out, tell me not to worry, that everything would be OK. My expectations were not met. I was dealing with my mother’s case “manager,” Victoria, on an emotional level. SHE was dealing with me on a purely intellectual level. I was the child, with expectations. She was the adult, the unyielding parent. She was protecting her stance, she knows that whatever happens with the government and its playing with healthcare, can lead to catastrophe. She surely has been told not to be generous, not to dole out hours to those who need help. There must be “medical necessity.”  This is her job. Yet, the social worker who called me from this agency did relate on an emotional level; she was kind, open and most of all  she listened. In fact she heard me.

Victoria, the case manager, was reading from a script. When she went silent, when she couldn’t respond, it was likely due to the fact that she wasn’t prepared. When I mentioned that the agency that supplies my mother with aides was not training the women adequately and sending them in without knowing how to bathe or cook, Elizabeth asked if my mother was “picky.” If being bathed and having someone make your breakfast, both listed on her care sheet, makes my mother picky, then I guess she is. The aides invariably do not meet expectations. The verdict: Victoria turned statements around to illustrate that the victim was at fault. Knowing my mother, she has taught each and every aide to wear gloves when they handle her food, that they set her little table with the proper utensils, that they wash plates and utensils with hot water. That the garbage be removed. My mother insists that she is the “patient” and that the care giver be pleasant. It goes on and on. The world according to my mother. And she is correct.

I got tripped up during that phone call with Victoria, because I didn’t stick to my script. I didn’t present all intellectual, hard-nosed facts. Instead, I allowed emotion to get in the way. When I began to lapse and list the litany of what I deal with daily with each of my family members–not just my mother, Elizabeth shut me down, said she can’t listen nor could she help me with any one but my mother. But as she wasn’t doing that, I spilled the guilt trip.

Imagine being told that I should/could be at my mother’s for mealtimes. I might as well move in. A totally unprofessional response considering that this is what an aide does; therefore, she was admitting that my mother needed more help.

This woman, whom I wished I could talk to in a more warm and fuzzy mode, didn’t want to hear me. (She wanted to bolt, to get to the next person, to hear the next person’s complaints and check the calls off her to-do list.) She did NOT hear me, she did not listen, she didn’t have her facts straight. I believe her reference to a denial to more time was in reference to the previous event with the previous care giver. The fact that she didn’t remember why she called me last week was telling. She claims she asked for another hour and it was denied; I received nothing in writing. She mentioned that they would not pay for an hour for an aide to be available to go down and correct any dinner-order errors, THAT was not a medical necessity.

But here is the deal: I faxed medical forms in on June 30 to update information. My mother had LOST weight. It was indicated. It was not mentioned in the call. I reminded her that the hour I was asking for was to have an aid in attendance to warm up the food and cut it and serve it. [weight loss is a medical issue. My mother pays extra to have her meals delivered to her room, it is her right and she pays for it. If she were to eat in a large dining room she would not have any help eating.]

Victoria seemed puzzled by my request to have the food “cut.” What, she can’t cut her food?’

“NO!” and … when the meal is over she is readied for bed. This was completely glossed over. That $600 hour from 6:00-7:00 pm.

One of the first things I said to Victoria before I spilled my seemingly disjointed facts was “God help us when we are so old.”

There was no response.

Stuff like that isn’t in her script.

This series starts here:
Part 1: And The Band Played On … a mother’s life, a daughter’s journey

The previous post is here 

The next post is here