The fearless girl sculpture facing the bull at Wall Street, NYC

During the week I did a mini blog on facebook about my day, I posted the above photo. I awakened on that day and told myself that nothing was going to get in the way of solving an issue with my mother. That issue is small in comparison to what I face now. I feel like I am constantly being shot at with laser-bullets that are filled with problems. Just when I think I can breathe I can’t catch my breath. This is what is being shot at me as I hurtle through space:

1. My mother’s rent checks which I usually hand deliver to her building were mailed on a stormy day: they never made it to the proper place and we began receiving late fees. Two checks were stopped and had to be reissued; the originals are lost in space.

2. My mother’s re-certification papers were also lost in space. The packet contained about forty pages of personal documents and were down to the wire as the original request had never made it to me! I ended up collecting copies and hand delivering them. I thought all was well after speaking to the entitlement department.

3. My mother must have Ensure; I was told that she had a Rx for same that covered her through June. Well, guess what? She hadn’t received a delivery since December. After a week on the phone trying to track down the order, getting hung up on, and getting very disheartened, I ordered a dozen Ensure from the pharmacy and had it delivered, resigned to pay out of pocket. THIS stuff is expensive…

4. On International Women’s Day, I saw this statue of the little girl staring down the bull and decided, “I can do that!” I was on the phone from 10:00 in the morning until after 5:00 pm: I made call after call and untangled a mess of details and procedures with suppliers and the medical case manager, who, I might add, I believed misled me initially and sent me in the wrong direction. I think I may have resolved the issue and in doing so, found a new supplier that I feel will be an asset. THIS should not have happened.

5. But, another ray was fired at me…my mother’s private long term care insurance, for which she had been paying thousands of dollars over many years, and which ultimately, provided her with $60/day in care — enough for three hours of help (but I only took two hours to stretch out the coverage), is DONE. As of next month, my mother will not have anyone there to help her with her evening meal, clean up and get her ready for bed, unless of course, I pay that $40/day out of pocket. Doesn’t sound like a lot but add it up.
I had prepared early by asking the case manager to please re-evaluate my mother for more hours. A nurse came, wrote the report and the decision was “NO.” They didn’t feel there was any change to warrant the additional time. She is already covered eight hours and that’s it. They never took into account that someone else was helping her in the evening and she was paying for it, and, please consider the fact that she is visually impaired due to macular degeneration, is frail (well, where is the Ensure, she is only 84 pounds?) can’t stand for more than a minute let alone walk without assistance and can’t even reach the microwave to warm her meal. On and on. But we got the answer…NO.

6. Well, take THAT! I am going ahead with a hearing! AND I have a alerted her physician via a fax on Friday to fill out a report backing me AND to fill out an application for more VA benefits which will give her hours of coverage just in case. Now it is a matter of spending more time on the phone and getting people to do their job.

7. But, if that isn’t enough, the lasers got fired again. There was a load of mail at my mother’s and after picking it up, I was flabbergasted:  the application I had hand-delivered had been processed and the upshot is: my mother’s income is too high by over a thousand dollars which be considered overage and must be returned to her Long Term Care coverage. Mind you, the paper work was the same as last year and yet the “overage” went from a $6 spend down to over $1,000 spend down. WTH?? This is what covers the 8-hours of the aide. When I looked at the checking account there was about $800 after all the expenses that had been taken out. How does one pay for an almost $3,000 rent, household necessities, personal needs, Ensure, and now for care? It doesn’t add up. There I was on a Saturday night, my feet buried in piles of envelopes, folders, papers, scanning letters to the trust and having a primal scream. Of course no possible answers until Monday, another day of anxiety until then, leading me to …

8. …a hearing with another agency.

S O A P   B O X
THIS is how people without an advocate get beaten down and just plain GIVE UP, go without health care, rely on family, or rob banks.
THIS is how an advocate ends up working FULL TIME tracking every paper and following up with call after call. Essentially giving up a part of one’s life.
The little girl facing the bull, with the swinging ponytail looks like I did at age 8. She is made of bronze and can maintain her youth, her temerity to challenge: she never backs down. I try to keep her in my mind and heart, but, in my world, the world of paper and people and aging and reality, it is hard to remain tough as bronze.

My mother is about to be 99 years old.

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

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