Wednesday, March 30, 2011

Evil Nurse, Bad Help, Despair

I've been 'buked and I've been scorned as the song goes. And i had to take it. I have no recourse. The letter in progress:

Nurse S. invited me to send a letter to the Board of Directors. As she said this twice during the rancorous and upsetting visit she made to my home.

The nurse insulted, demeaned and threatened me. This after she asked if i had any concerns and i told her how i was left without food at Christmas time. My aid's car broke down, allgedly just before she was to come for me. HHS did not offer me any other aid or any assistance. If i had a private relationship with my aid, then i could have rescheduled or found some other time. As my relationship is with HHS - it was from HHS I sought a replacement. HHS did offered no apology, accommodation, orassistance.

She told me tersely (insultingly) that it is my responsibility to care for myself.
She told me that if I did not like HHS, then perhaps our relationship should be terminated. She said she felt uncomfortable about me using the services. That HHS has 300 clients and there are others who are in wheelchairs (I didn't understand what this was supposed to indicate.)

This conversation took place while my HHS aide was out shopping for me. I've said nothing but praise for my aide, which i reiterated.

Well how could I like my aide yet not like HHS, she asked? I reminded her that she had solicited my concerns, I had not begun the conversation.

I guess it was foolish to answer the trick question. I was invited to express concerns
and then brow beaten, insulted, demeaned and punished for it.

I was told that the reason no accommodation would be sought for me was because
all the other aides were "too stupid". These are not words that I have ever used.
I've expressed frustration that my shopping list for Wegmans, a computer print out with pictures as well as words , indicating amounts and with a running total
could not be followed by several of the substitute people sent.

One woman brought back two bananas when the list said 4 pounds. The total dollar amount
for this was around $2. This signified she understood little of what was explained to her about the list, the money before she went shopping. I described this as "functional illiteracy."

Another aide could not complete the list (about $70 worth of groceries and a mere 15 items) in the two hours allotted -- a task which takes my usual aide about an hour.

I don't understand why there is so much victim blaming in her and your organization's point of view. I use you because I need help. I am paralyzed and in a wheelchair. If I could shop for myself, I would. I used to in Rochester where there was paratransit and here, for the few months that a once-a-week bus was available, but as there is no paratransit in Corning and no grocery delivery services, I cannot. There are things I can't reach, light bulbs that need changing. This is the help I need for which I use HHS.

When I asked about the other aide for whom I had praise -- S -- she told me that S has left HHS.

That's where i left the letter, which i will not send until or unless I can find someone else to shop for me or if they dump me.

I thought i was picking my battles. I've never ever ever complained about my aide -- though she's left me up shit's creek without a paddle more than once. But she is the BEST of a crap pile. This woman went off on me because I DARED to say anything was wrong.

Bad Nurse said the problem was that the only day i was available was Monday! I said I've NEVER said that, in fact I hate Mondays, I always lose service because of holidays and three day weekends.

I've only said I can only do afternoons. She said well that's my problem. And i replied - you cant grind me down any smaller than i am, I am already ground small.
I am disabled and can't be dressed and ready any faster than I can empty my bladder, do my bowel routine, change my diapers, and empty my urine bag. If that wasn't the case, then I wouldn't need to use your services.

WHEN I told her she was insulting and demeaning I would no longer speak to her -- and stopped talking. Totally. You think I'm stupid, she said. I said nothing.

She freaked and started apologizing. I told her she had the power and was oppressing me and then she got cute -- i don't have power, she said. I reminded her how she just got through telling me that if I was SO UNHAPPY With them, then perhaps i should go elsewhere.

Then she repeated it, in a babying voice, as if to fix or recast or reframe the threat and insult.

This was horrible and sickening. I stopped talking and started praying and chanting to myself,

I talked to her again the next day -- turns out she was supposed to get my current financial information -- to see if I still qualified for the subsidy that makes their inflated costs bearable, enabling me to pay $25 a week on top of groceries vs. $50 a week on top of groceries.

All this abuse and it's not for free!

So she called from the office to do what her visit was about. And if i'm still with them, I'll see her in 6 months when she comes to watch B in my house-- which is what i thought she was here for yesterday.

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