Oh the Pain!

March, 2014

Even back in the mid-1970s, people who did not know my mother thought she was Joan Rivers. They had the same hair styles and color, wore the same things, basically. Like Rivers, my mother is perfect when she dresses. Unlike me, everything matches, basically New York Flash & Trash. My mother is not a celeb watcher. She never paid attention to the woman everyone said she resembled. The hair styles, over the years, became just plain uncanny. Going back through the past four years of photos, it is rough, how my mother has aged, primarily due to dealing with my father and the Alzheimer's.


My sister and I live in horror of medical proceedings. I think any normal human should, but, when you have a 90-year-old father with AD and an 84-year-old mother who has a serious cardiac condition, it is worse, trust me. My sister and I monitor everything going on with them. It is exhausting, annoying, and can make a person want to lose their temper on a regular basis, but it is necessary. I don't think I can stress how necessary this is. It is critical to anyone's survival, but when dealing with seniors, it is even more important. Now that the details about the incident leading to the death of Joan Rivers are finally becoming public, as the daughter of a woman her age, I am horrified.

I am also quite angry.  During the spring, when my mother began developing late stage signs of digoxin toxicity, and was placed in ICU, someone put a DNR bracelet on her. DNR = Do Not Resuscitate. They were also discussing the fact that she was in congestive heart failure. The ICU doctor said that she was having a heart attack. My mother was in a panic. When we discovered what was going on, I had to go total bitch on everyone to get the directive changed, including threatening legal action. That's the real problem, I think for anyone dealing with any medical crises, even when it isn't a crises. You must have someone with you who has emergency POA. (Power of Attorney). You need a medical directive. Depending on where someone is, you don't leave them.

We're dealing with a medical procedure on Oct 2. My mother has a serious back problem brought on by living, falling off a few horses, breaking a few things, and just life in general, along with osteoporosis and osteoarthritis. They will give her a local and inject something into a nerve on her spine, to deaden the pain. If it works, they go back in and do a more complicated procedure. It should not be a problem - if you don't have a pacemaker, or on blood thinners. Then, because of her age, and her medical history, we hold our breath.

I can't imagine allowing someone who was the age of Joan Rivers go into a medical procedure, where she is not being supervised by someone who has total control over where is going on. I can't imagine a physician taking it upon himself not to contact a family member to tell them what they are going to do. Sure, in a triage situation, we've been there and done that, but not for a biopsy. If I were Joan Rivers' daughter, I would be ready to destroy a few people. Knowing how angry I was after the home health care debacle on the Fourth of July, just compounding it by what she is going through, and I'd be highly litigious.

 I was reading about a physician who was sentenced to a major prison term, for scamming patients who were dealing with cancer. There are times when physicians are scamming, then there is incompetence. There are times when you wonder which is which. I'm still not sure if what we were dealing with this spring and early summer was incompetence or a scam. I am fairly certain we are looking at a Medicare scam. Home health care companies get something like $250 a pop when dealing with elderly patients - at home.

 The more visits they make, the more money they get. The more tests they give, the more money they get. They cannot do home health if a person is not confined to the home, as an invalid, so they were literally turning my mother into just that. We put a stop to it. Unfortunately, around here, we're dealing with an out of control corporation where the visiting nurse is ruining lives and families. I figured out what was going on and had my mother terminate them. When doing so, I discovered they were treating her for Congestive Heart Failure, only 1/2 of her heart working at all, and she was listed as terminal.

 One nurse wanted to have her to go bed, asked how she was going to "dispose" of my father, and would she allow the health care company to make end of life medical decisions for her. My mother was in a panic. Fortunately, she did a trip to her cardiologist a few days later. She has a-fib. She has a blood pressure problem and my mother, the ultimate food Nazi has high cholesterol.

She is NOT terminal. She is not in the final stages of congestive heart failure. When she has problems eliminating fluid, she can go into the early stages of CHF, but it is stopped by diuretics. The physician who assigned the home health care program lied about her condition. I think he did so in order to make more money.

 I know of a local family who is dealing with with what we are, a 90 year old man with AD. One daughter is the care giver, the other helps financially. Trust me, things get a little testy. I've screamed at my sister a few times. She's hung up on me. She's cried, I've had melt-downs. But - it's family. We do that. We also agree 90% of the time. It's that 10% which gets a little testy.

 This is what happened with the man's two daughters. The same home health care nurse who was turning my mother into an invalid, taking over her life, stepped in and sent social workers to the house, to take this man away from his daughters, who were being 'abusive'. They were horrified, and eventually kicked them out of the house. This is what is going on here. It is enough to make every family member beware and be terrified of home health care. The worst of it, is the fact that these people are paid by Medicare. BUT - those of us who have given up our lives, aren't allowed to get half of what these people get - we go broke. We lose our life savings. We put our lives and careers on hold. At least 65% of family care-givers in this country are women. I suspect if the numbers were the other way around, and 65% of the care givers were men, family care-givers would be eligible for a nice little stipend.

 That's my tale for today, and I'm sticking to it. On Tuesday, I was up until about 1AM doing a couple casseroles for the parents. I have a bad habit of cooking late in the evening. I didn't get to bed until around 4AM, and didn't fall asleep until around 6AM. The phone calls started Wednesday morning around 11AM, and continued until 2:30. I spent hours arguing with an idiot in a doctor's office, that basically took up about 4 hours of the day. By the time I finally reached the parents' home, it was nearly 8PM. We had dinner, then I watched Top Chef. It was after 11PM before I finally had the kitchen cleaned. I didn't even hit the blog until after midnight. I had an hour long nap around 7AM. Finally limped home about 1PM. Fell asleep at 3PM. Was up by 7PM.

I'm tired. I dare anyone to say I'm having a life. I'm not complaining, but, if the Feds are so willing to pay money grubbing, and cheating home health care professionals so darn much, why not give family members half of what the money grubbing corporations are paid, and let us truly care for the parents the way we know they need to be treated.

Anyone who thinks this is a poverty issue is wrong. If your parents are unable to afford a Medicare supplement and qualify for Medicaid,you can get a couple hundred dollars a week to care for them. If you have anything at all, and want to utilize a care facility, you cough up a fortune each month or must be declared destitute, losing everything to get into one.

If you are wealthy, no problem. This is a middle class problem - a middle America problem. You know - we're the ones who constantly get the shaft. It is so wrong that men and women who have worked hard, been the Greatest Generation, paid a fortune in taxes, and done what was right, must now suffer - because of the stupidity and draconian rules of the Feds. I don't expect it to change any time soon.

 All rights reserved, SJ Reidhead