First published on July 30, 2014.
A conundrum can be defined as an intricate and difficult problem. I know of no better word to describe what my family has been through since April. Back in April, my mother nearly died, suffering from toxicity created by having taken digoxin toxicity. Anyone who takes the medication for any length of time is, we discovered, at risk of what can be a long, lingering, and torturous death.
“...Digoxin toxicity is a poisoning that occurs when excess doses of digoxin (from foxglove plants of the genus Digitalis) are consumed acutely or over an extended period. The classic features of digoxin toxicity are nonspecific: fatigue, blurred vision, change in color vision (e.g. “yellow vision”), anorexia, nausea, vomiting, diarrhea, abdominal pain, headache, dizziness, confusion, delirium. It is also associated with characteristic cardiac arrhythmias…”
When someone consumes digoxin for a period of years, the toxicity can build up, very slowly. It is like gradually sucking the life out of someone, which it was doing to my mother. The problem is, we were thinking she was exhausted, dealing with my father’s Alzheimer’s Disease, and the fact that she is 84 years old with serious cardiac problems.
In early April, it reached the point where she could not breath, even with her oxygen. In the ER, they checked her pacemaker. She spent 6 hours in the ER, being stabilized. It was then that they picked up the fact that her digoxin level was toxic. While she was there, the ER doc worked directly with her cardiologist in Las Cruces and her primary care physician. By the time she was transferred to ICU, we knew exactly what was going on with her.
I had to run a couple errands, take my father back to San Patricio, and pick up a few things. By the time I returned, a physician I’d never seen was in her room, talking to her. She had, he told her, had a heart attack. He felt she was having one, which is why they had monitors on her. She had also put a DNR – Do Not Resuscitate – bracelet and orders on her chart. (I did not know this at the time). He kept telling her he was watching her condition, was changing her meds, and kept asking questions that did not make sense. He was putting her on a strict cardiac diet, stating that she should have been on one for years. I told him that she was not having a heart attack, that she monitored her sodium intake, and her cardiologist said a cardiac diet was a joke. He knew she was quite capable of looking after her own interests.
Implications were made that she was incapable of medicating herself or my father. The physician kept asking about medical directives. He was told that my sister and I have power of attorney and an advance directive, when needed for both parents. Anyone who had gone through digoxin toxicity knows that it causes a problem with oxygen saturation, strength, heart rate, and as it progresses, a person has a problem walking. It also mimics congestive heart failure.
By the time I left, he had returned, telling her she wasn’t having a heart attack. He also apologized for NOT reading her chart before terrifying her. That was it. He issued some orders and left. They brought a repulsive looking meal into her. She ate nothing. I told the nurse that she had a serious problem with a blood sugar drop to the point where she went into a coma, a few months earlier. She was to have sugar and protein, which were more important, according to her primary care and cardiologist than the damn cardiac diet.
Well, they would not feed her. My mother is the world’s pickiest eater. I know what she will and won’t eat. I was not allowed to go out and get a Sonic chicken sandwich, which she would eat, and would help her. Instead, they just let her go without. That’s what the idiot doctor wanted. Finally, two days later I was able to get them to understand she required food. That, though, was after we realized they had put a DNR on her, and the jerk doctor told her she was in the process of having a major heart attack – and he was going to stand there and let her die.
Oh, wait, it gets better, be patient.
My mother is allowed to go home on Sunday. She was exhausted. We had to borrow a friend’s wheelchair. She was having problems breathing. My sister and I were informed that she needed help at home. She would need someone staying over night. She would need day help. Home health care had been called in, with physical therapists, two different ones, social workers, and someone to come in several times a week to do vitals and check her medications.
My sister and I fell for it.
Cathy stayed for a week. I would drive out at least five times a week, stay over-night several times a week. Maggie can in to stay. We had an over-night nurse lined up. I let my sister handle things. We have a division of labor, she handles medical. I deal with everything else. I never even thought about it.
Then, the questions began.
Within three weeks my mother looked fantastic. She was feeling better than she had felt in years. Her cardiologist took her off all digoxin. Then, the racing heart – a-fib – began again. Her cardiologist was out of town. She was put back on digoxin. It takes two weeks to get into the system and two weeks to get out of the system. We’re pushing June by this time. It was decided to take her off the digoxin and increase the amount of cardizam she was taking.
We have a problem with cardizem. My sister and I, along with our mother, think that the fact she was given too much cardizen, nearly ten years ago, was the root cause behind the fact that her heart stopped, twice. She nearly died. I had the world’s worst temper tantrum to get her a pacemaker.
The comments about my mother’s mental capacity began. I spoke to the home health care nurse, who suggested the real problem was the fact that her memory is failing and she is incapable of handling her own medication. They would be glad to do it for us.
“…Atrial fibrillation (AF or A-fib) is the most common abnormal heart rhythm. It may cause no symptoms, but is often associated with palpitations, fainting, chest pain, or congestive heart failure….”
A-fib is hereditary. Both my grandparents had it. My grandfather had a heart-attack, when I was a little kid. My mother’s oldest sister had it. Her brother has it. My sister and I both have it. There is a major stress connection, which is what hits both my sister and I, and our mother.
Home health came in, would take weekly blood tests for the blood thinner my mother was taking.
These are the salient facts:
- My mother has been dealing with a-fib for at least 45 years.
- I was told that she needed to increase her cardizam dosage to help with the a-fib, which had increased after she no longer took digoxin to help control the problem.
- This is now around the middle of June.
- The cardiologist was out of town, again.
- My mother’s cardizem dosage was increased from 180mg/day to 360mg/day.
- I called the cardiologist’s office, about it. She should only be taking 180mg/day, and a 2nd if necessary, but they would rather not.
- Cardizem must be taken at the same time.
- By the 20th of June or so, my mother’s legs & ankles began swelling. If you deal with a-fib, this is one of the problems. It must be controlled by a low-sodium diet, and diuretics. Too much fluid can lead to Congestive Heart Failure (CHF).
- She was having a serious bladder infection
- My mother kept complaining.
- We were planning a surprise party for Maggie on June 28.
- On the 25th, the home health care nurse told my mother she had no real problems with her legs & feet swelling.
- By the 27th my mother is miserable.
- On the 28th we had the party. She could barely walk.
- I went to pick up the new prescription of cardizem at Walgreens.
- The process took 2 hours. The cardiologist did not know about the changes. His nurse did not know. The pharmacist allegedly filled prescriptions for 360mg of cardizen. I knew that was too much. I called the cardiologist office. Something was going on.
- I called the home health care nurse.
- Again, I am told that my mother is incapable of handling her medications. (Nothing can be farther from the truth).
- She has me call her office.
- Her office hangs up on me, tells me to call the Walgreens.
- The pharmacist at Walgreens is on the phone with the cardiologist office for nearly a half hour.
- The next morning, I suggested my mother stay off her feet.
- She calls at 1AM, tells me she needs to go to the ER.
- By the time I drive the 20 miles to her home, she’s being treated by EMS.
- In the ER, she’s told she is in congestive heart failure there is so much fluid in her system. She is put on extremely powerful diuretics.
- She spends 2 days in ICU, dealing with diuretics.
- She was put on high-powered antibiotics for the bladder infection.
- There are 2 additional days in a private room with the same thing.
- She was put on an extremely intensive cardiac diet, basically eating nothing.
- She did not have a bladder infection.
- She was having a reaction to the increased dosage of cardizem!
I call her cardiologist. No, they had not been consulted as to why she was there. Then, when her primary care physician finally takes charge, he consults with the cardiologist. She is given more intensive doses of diuretics, additional cardizen, and mega doses of potassium to counteract the effects of the diuretics. When I pick the meds up at Walgreens, the prescribing physician is neither her primary care physician or her cardiologist.
By this time it’s July 2. We have an appointment scheduled with her cardiologist on the following Tuesday. On the morning of July 4, a substitute health care nurse stops in to do vitals, etc. She proceeds to tell my mother:
- She is suffering from congestive heart failure, and in the final stages of it
- She is terminal
- Her heart muscle is so badly damaged less than 50% of it is properly working
- She could drop dead at any moment
- She is not to be left alone
- She needs to have a walker
- Does she had an end of live directive
- If my sister and I cannot be reached will she allow her physician to make an end of life medical call
- How does she plan on disposing of my father, if she is dead. Who will care for him.
- Has she made plans to put my father into a kennel for people suffering from Alzheimer’s
- Because her condition was so serious, she could not leave the house
- Her diet was to be monitored
- She was not capable of handling her meds, nor those of my father
- Because they were involved, she was not to go shopping, out for lunch, and her interaction with friends was to be limited
- No beauty shop
- No nothing – she was to sit there and wait to die
After the improvement that we had seen the first of May, home health had turned my mother into an invalid. She rarely dressed. They were in/out of the house, with various therapists, social workers telling her how to walk, how to clean, and what to eat. They told her she was to take up all the rugs in her house. She could only wear trashy non-skid shoes. She was to dump the Ferragamos, and do trash athletic shoes. They took over her life. They popped in for lunch. They had little meetings at her house, with the full court press.
You can imagine how well that went over, ruining what was not going to be an easy holiday. My mother went into a serious depression, terrified. It was Monday before I was able to get hold of her cardiologist’s nurse, who had been working with her for nearly 10 years. She explained that my mother had the following conditions:
- Cholesterol problems
There is no congestive heart failure. She was not dying, she was not terminal. Her cardiologist would deal with her the following day. He immediately lowered the dosage of the cardizem, telling her that the problems she was experiencing, swelling, breathing, water retention was due to the cardizem!
Oh, and – he had never assigned home health care. They were not there at his request. He had never spoken to anyone from this specific office. He worked directly with my mother. He wanted to know why they were handling her blood tests. He wanted my my mother dealing directly with the lab, and not home health. She was to call him if she had a problem. She was not dying. He thought it was funny, and then he was furious.
He changed her medication
First thing first – the leg swelling is gone. She’s breathing better. There was no bladder infection. She has though, managed to have a major flare up of a sciatic nerve and is in agony (but that’s a different story).
We’re now into the 2nd week of July. Her primary care physician’s nurse explained that home health had not been assigned by them. She made a smart ass remark that good luck getting rid of them. When they would call, to schedule a meeting, she would tell them she was busy. But – they told her, she was under their care.
We realized they were controlling her life. By this time, the mystery writer in moi, began to wonder about things. Just how far would these people go. What would they try getting her to sign. Fortunately, my mother was born 84 years ago, and not yesterday. She knew the game. I’d recently finished writing a murder mystery dealing with how seniors are separated from their families by people who want to wriggle in and see what they can steal. My parents’ home is filled with antiques. The contents are worth ten times what the crappy little house is worth. (I hate that house – a retirement down-sizer).
The new cardiac meds are working very well. She’s in agony with her back, but that too will eventually right itself. On Sunday, she had a call from her home health care nurse. If my mother did NOT allow her to come out on Monday, the 28th, she would be billed for everything, with nothing going to Medicare.
Yea, that’s unethical blackmail.
I was there when the nurse came out to sign her out of the program.
We started asking questions. The woman did a two-step around the meds screw-up, which was her fault. The punch-line, though was the fact that the person who assigned them was the physician who met with my mother for a grand total of 30 minutes! In her records he had written that she had suffered from congestive heart failure for over 40 years. He also basically stated that she was incompetent.
At least we know how it all began.
What I’ve learned is that home health is a Medicare scam. There are people who disparately need it, but, the scam is that it is very big money, a very big for profit business, and they use the nice sweet little hospice/home health care label. The company that was dealing with my mother has over 3600 employees, nationally. Every test is done for profit. They bill for every service. They are there to make money, not to help the person in need.
I am absolutely convinced something worse was going on. It is a two-edged sword. People need their help, but, you can’t go into the system without knowing what is going on, and fast. Like all family crises, the situation usually is fast, with things thrown at you. We never know the right questions to ask. We don’t even think about it. The whole process was easier for me, I’ll admit that. I thought they were helping the parents.
Little did I know, just the opposite was happening.
This is a cautionary tale. When my mother asked a question or two, she was told that her president was going to do away with home health care, and she would left without their assistance.
It’s a strange situation. I swear the whole idea is to create dependency in seniors in order to milk Medicare and insurance companies for all it’s worth.