Sunday, August 8, 2010

Remember Me?

Boy, I’m sure a flop at this, aren’t I? I know that fresh material should be added to blogs every day if you want to hold people’s interest and build “traffic”. I sure wish I could manage that but there seems to be a preordained schedule here that simply does not include time to blog. In fact, I’ve partially written two posts since I last published, both with different subject matters and both now old news.

A lot has happened since my last brief note when said I said Mother might be facing a trip to the hospital. She was experiencing a lot of stomach discomfort and since she has so many problems in that area, most of them related to Gerd/acid reflux, I was trying to associate all her pain with that problem, or the fact that she needs a feeding tube replacement. I asked the nurse practitioner to pay her a visit and she saw nothing that said hospital. In fact, Mom’s weight, blood work, and vitals have all improved since last November and they were excellent then. Then the evening of that very visit, Mom finally answered my prying questions when the pain hit again and it turned out to be her hips, which also causes pelvic pain when aggravated. Duh. In the course of one, or more, of the aide’s practice sessions, she’d been turned in the wrong way or pressure had been applied to her body in places it shouldn’t have. It’s always scary when it happens because I never know what or how much damage was done and only time will tell.

When it does happen, practice sessions cease and anything that involves turning her or moving her legs becomes my full responsibility, and by my choice. I learned how to do those things early on and have managed to protect her hips for three years now and since I know how to do it, I do it. That unfortunately means I never get a break from the physically demanding part of her care. She’s incontinent and is changed as many times a day as needed, and it’s draining to the person doing the job. It’s taken over a week now for the soreness to subside, which it gratefully did. I’m told the tissue around the hip area bruises, and only time and careful attention on my part helps her through it. I hate it for her but better bruised tissue than new fractures or dislocation of old ones.

At the onset of my assuming total responsibility for her, our four-day aide told me she was having long hoped for knee surgery. She had struggled with the physical stress of turning Mom from the beginning and I feared it would prove to be too much for her, so learning she was doing something to relieve her constant pain was a good thing. Mom and I both really like her. She’s very caring, has a good sense of humor, and added a bright spot to our day. She also understood us, and why it’s so important to keep Mom at home, which was more than a welcomed relief, so we will miss her. But it means we’re back to replacing aides, possibly even agencies, so I’m still in the same situation as I was when I started this blog. As I keep saying, it’s never-ending.

Mother’s difficult to care for, and in all ways. She’s strong as bull, both in body and attitude, and resists even the simplest thing that needs to be done for her if she’s of a mind to. You never know what side of her disposition or personality you’ll be dealing with each day, so you take what you get and do the best you can to deal with her. That’s confusing to most aides because her mental state dictates what you can do and when. For instance, it’s noon right now and I’m gulping down toast and writing this while waiting for her medication to calm her down so I can change her again. She demands attention from the time she opens her eyes in the morning and that continues straight through the evening, sometimes the night. The only possible break you might have is the three or four hours she naps in the afternoon…if she naps. Boy, do you pray she naps.

Her behavior, her personal care, and keeping her occupied rule the day here and is compounded by the fact that her hospital bed is in the middle of the living room so there’s no getting away from her, not for a second. We have been flooded no less than four times by our plumbing-challenged neighbor upstairs, the damage of which we’re still living with, and then once when a main building line cracked and chose our floor and our unit as the perfect location in which to do it. Mom’s bedroom and bathroom were soaked, one bedroom wall had to be cut out, pipes replaced, yada, yada, yada. She and her hospital bed were immediately pulled into the living room and there she has remained because I’ve had not the time, money, or energy to put her room back together. I managed to have it painted but that’s it. I’m one person with two hands, two feet, one bad back and one brain cell and I’m tired! She’s quite happy with the arrangement because she’s in the middle of everything and rules this small place with great satisfaction. The world is her oyster and she never lets you forget it. She’s a laughable, lovable, aggravating, maddening handful that I wouldn’t trade for anything in the world, but I do have to ask myself “Why me?”

And I’m alone in this. That’s where an even bigger “Why us?” comes to mind. My younger sister, who would give anything to be here helping with her mother, lives in Arizona and is in the sixth year of congestive heart failure. She has outlived statistics but is at a point where she can hardly do anything for herself. She and her young daughter are living on next to nothing and can’t come here because she can’t travel. We can do nothing to help each other except offer moral support. My son is in Houston and after losing his start-up business, plus most of what he owned later when Hurricane Ike hit Galveston, he started working, without experience, selling cars for a large Houston dealership. He loved the people he was working for and they liked him, and it seemed his life was on the mend. Guess what kind of new cars he was selling? Saturn. Yep, after his first four months there, GM announced they were no longer going to produce Saturn. The dealer consolidated three locations into one and Jeff has managed to survive the employee cuts, but he’s living on a small draw while the dealer negotiates with GM for a different franchise. He’s willing to do anything there so his hours are long, plus he’s trying to learn the ropes of working with an international investment firm in his off hours with the intention of saving both our behinds. In would be senseless for him to come here as our state’s unemployment rate is higher than most and he’d never find work. He’d also have no place to stay because he couldn’t hold down a job without sleep, which is a rare commodity here. There is no other family, except for Mom’s sister who hasn’t even inquired as to Mom’s health but maybe twice since last fall. But then, that’s her. So that’s it. I’m on my own and there’s nothing I can do but keep doing what I’m doing for as long as I can, which financially, is not much longer.

I’m not the only one though. There are millions of families out there who struggle just as hard or harder than I do. In fact, I’ve made two new Facebook friends, both young women who are single and taking care of their mothers, and for longer times than I have. My heart breaks for them when I read their posts because I know what a grip care giving has on their lives. Their situations are different from mine in the sense they manage to get away for a while, even to run errands or do something fun. That’s not the case here. Mom’s condition keeps me prisoner unless I have a competent, trustworthy aide, and you know that story.

They also both live in states that pay them for caring for their mothers, so they don’t seem to operate under the financial strain that I do nor live with the fear and stress of impending doom. Man, that’s tough to do. Over time I have checked with every state and Federal agency I could find and there only seems to be one option available here in Florida that I dismissed when I learned about it. I could be paid for a 40-hour week (does 24/7 care equal 40 hours? Hmmmm.), even though I’m told the pay is minimal. In return, I have to have an administrator who will be responsible for overseeing Mom’s state “budget”. That person will be responsible for placing all the services Mom has: feeding tube rental and supplies; oxygen concentrator; personal care products like pads and Depends; everything, and submitting those costs for payment each month. I cannot do those things because I would be considered an employee and that wouldn’t be kosher. Paleeze! I also would be faced with losing some of my hourly income if I had to split the time with an aide, which I would have to do. I can do everything for Mom for a while, but after a few weeks of it, I’m physically exhausted. Heck, I’m no spring chicken any more! Not only would I need a physical break, I need to be able to leave home long enough to go to the doctor or run an errand, even take a walk. What a refreshing thought! The administrator would have to hire the aide (personal hires are riskier than agency aids, God forbid) and would have to file all the necessary taxes and workman’s comp like any other employer. Isn’t that a crock? The biggest problem is the administrator has to be here and available for sit-downs with whomever. Oops! We have no one to fill the bill. See? Why us?

But I’m frustrated enough and tired enough and fed up enough and desperate enough that I’m ready to take on the Feds, or the state, or whomever because there has to be a solution for this. I even checked on state and Federal grants. Did you know that if I were involved in the study of West African elephants, I could apply for a Federal grant? Isn’t that a hoot?! Unfortunately, I’m not studying elephants; I’m just trying to take care of my mother for the time she has left. Golly, I guess that’s not as important as studying elephants, as wonderful as they are. What a screwed up world!

So tomorrow’s another day of As The World Turns…or ER…or House…or maybe Criminal Minds, even CSI. In fact, Dictionary.com’s word of the day is:

fantod \FAN-tod\, noun:
1. A state of extreme nervousness or restlessness (usually expressed in the plural.)
2. A sudden outpouring of anger, outrage, or a similar intense emotion.

I do believe that’s a sign. Stay tuned.

Till next time,
Sharon