XI. Alone

Wednesday morning, June 15, a young woman from our Hospice agency phoned me at 8:00 to inform me that my aide had a vacation day. (She may as well have said,Good morning, Samantha. Welcome to your day. This is how it will be. This is your mission. You have no choice but to accept it. We do not care if you might have plans of your own. We have to serve our own needs. You do not count.) Blown off again. Agency personnel have told me that these vacation days must be requested and approved in advance. I had made plans with a friend who had called me late the previous day, Tuesday, saying that finally he had a day free and could drive me around town, in exchange for my filling his gas tank, to shop for items I had been out of for months. Upon thought, utilizing my ingenuity and the kindness of others that Wednesday to plug the gap, I was able to get my other aide, coming from the healthcare services agency, to stay a little longer and the Hospice chaplain to come earlier and stay longer than she was scheduled. Her doing so meant that others of her patients had to patiently rearrange theirschedules. It’s that head domino effect – when the first one falls….

The day before, on Tuesday, my Hospice aide, a Certified Nursing Assistant, arrived at our home as scheduled at 10:30 a.m. The aide helps with Emma because Emma can do nothing for herself. For example, she may get confused using her walker and fall, or choke when she eats. As the aide walked through the front door, she told me that her superior had ordered her to leave our house no later than 11:45 to attend a mandatory CNA meeting at noon in their office 40 miles away.

Since my car quit running and I sold it for parts a few months ago, and since I am my mother’s sole caregiver, unpaid, and we have no family nearby, I must rely on the kindness of friends to drive me to the store. Too, I must be home unless an aide is here, to attend to Emma’s needs. Tuesday, a friend was coming at 11 a.m. to take me to the supermarket. We had made the appointment a week earlier. I had told my aide.

My friend is going to Hawaii for a while, so this is the last time she will be able to take me to the store for a month or two, and there is no one else available to drive me. Thus, I had to stock up. Besides, we were out of things we needed. My friend could have come earlier, she told me, as I eased into the tan leather seat of her top-down Sebring convertible. But I didn’t know she would need to, until 25 minutes before she was to arrive.

I gathered my groceries as quickly as possible, even had store personnel go around and find things for me to hasten the trip. And, then, pressed as I was, I couldn’t find the olive oil even though I had walked past it three times.

The aide’s duties at our house were to get Emma out of bed, bathed, dressed and fed breakfast. (Had she stayed her full time, she also would have given Emma range of motion exercises, and attended to her dental hygiene and toileting. I don’t know if any of these duties were executed.) Should Emma not finish eating breakfast before the aide left, the aide’s superior had instructed her to interrupt Emma’s breakfast, so she wouldn’t choke, and take her to the living room where she would leave Emma sitting on the couch with her little dog, Jetta.

When I arrived home at noon, the aide had gone. Emma and Jetta were alone, snoozing on the couch. They were all right. But Emma could have gotten up, used her walker, gotten confused and fallen.

This is the second time this Hospice agency has left my mother alone. The first incident occurred when I was out shopping at the Mall, 20 minutes away, a year or so ago. An aide from the healthcare services agency was at my house. She was a substitute, since my regular aide was out ill. This was her first visit to our home. She was to wait until the Hospice aide arrived. The Hospice aide called her office to say she would be late. I carry my cell phone with me. Hospice never called me, neither on my cell phone nor on my home phone.

The healthcare services aide left. She wrote me a note and signed her name, saying she had to go and what time she left. My mother was alone for two hours without my knowledge. When I arrived home, and called Hospice to find out where my aide was, they informed me that she had been at my house 10 minutes before I arrived home, trying to get in, but no one answered.

And, by the way, the state Division of Aging is of little help in these matters. They are nearly impossible to get through to, rarely returning my phone calls, and when I do get through, often misaddressing the issue – or artfully stepping around it as if they were in the middle of a cow pasture.

All the while, throughout these two days, the weather was award winning, sunny with temps in the 70s. An extended family of birds chirped and sang delightedly within the lush green leaves of the North American dogwood outside my upstairs bay window and the window of the adjoining room, my studio, like a tree house, where I write this blog.

I suspect I am not the lone caregiver experiencing these issues. While these are the only two incidents aides and agencies have left Emma alone in the three and a half years we have had help, there have been many occurrences when my regular aide – we have an aide or two in tandem come for up to three hours Monday through Friday – is off unexpectedly (to us, at least) and I have had to cancel my plans. Forget about planning a luncheon outing with friends. Even if the agency gives us a substitute aide for these hours, I must be here to show the aide where everything is and what needs to be done.

The failure of the White House and the Congress to extend the extra federal funding for Medicaid, effective July 1, does not help, either: Emma is number 17 on a slow moving state list (like, a spot opens when someone dies) for the state Attendant Services program, wherein funds are placed into an account to be paid the caregiver, whether it be me or someone I hire, for 30 hours a week. I would hire someone so that I can work to earn money to finance my future. Instead, I am working as a full-time caregiver unpaid, thus saving the taxpayers and the government, over the course of Emma’s declining life, hundreds of thousands of dollars, while I collect a little social security. I do not know what is going to become of me. I begin every day stepping into an abyss. As a result of these funding cuts, costs will rise in other areas of the healthcare system, according toThe New York Times. Moreover, when I receive the Medicare statements, I find it hard to wrap my mind around how much Medicare pays these agencies – billed in 15 minute increments, payments are approximately $200 per aide, $300 per nurse visit, and $600 per social worker visit. The statements do not show the cost of doctor’s visits.

Oh, and as it turned out, my Hospice aide was mandated to leave my mother alone to attend a party, a surprise party for CNAs.

–Samantha, June 18, 2011