My mom and dad took a cruise a few years ago, and someone stuck a microphone in my mom's face and asked her what she thought of marriage. Her reply, in front of the entire audience (and Dad), was that "the first 17 years are the hardest." To this day, no one knows what she meant, but I've always referred to it as "my Mom's curse."
CareGiving Kos is a community diary series posted generally on Sunday morning and Wednesday evening by volunteer diarists. This group & series is for those who are now (or have been) in the role of being a care-giver for a loved one. We want this space to be supportive and free of squabbles. Our only rule is to be kind to yourself and others who are going through a very difficult time. Please respect the concept of this group: No Politics Here.
Some background. I've written a bit on the healthcare journey my husband and I have been on since the mid-90's in this diary [http://www.dailykos.com/...]. And, I will try to not be too political for what I describe, but there is some politics in this. Everything I will describe after the squiggle has been since the apnea episode.
Once my husband's apnea had been dealt with, he got a good job with a computer company in Houston as a project engineer. He was very good at his job, and I think they were putting him on a "fast-track" to some kind of Fellow status at the company. I had a good job as a mechanical engineer, and we were finally seeing some way out of the financial disaster zone we'd been in since the apnea episode.
Then he got hit by a car.
He was sitting at a red light behind other cars. Someone not watching what she was doing drove into his car at ~45mph. Both he and she got out of their cars, along with the people in the car ahead, which my husband's car was now under, and exchanged insurance info. The police ruled it her fault.
However, my husband began to feel pain. It begins in the shoulder area and radiates. After much searching for something that would show up on an x-ray, the damage was discovered using MRI. It took a really good doctor listening to his description of the pain to determine what it was. The doc said where the damage would be found in the spine, and, sure enough, the MRI found it right there.
Not that the insurance companies accepted any of that.
They wanted a quick fix. Some kind of $20K surgery that would fix everything. Actually, since the woman who hit my husband was driving with a $20K policy, that could well be why. We spent the next 4-5 years in litigation. My husband lives with chronic intractable pain. Chronic means forever. Intractable means that "interventional" pain therapy won't work. Pain, well, most people here understand that.
He doesn't remember much of the two years following the accident. He spent that time in a pain ball, not able to interact with the world much at all. He lost his job because he couldn't work.
For me, it was like no longer being married. Once I got laid off, I took a job in New Mexico. We up and moved, and various friends came with us.
Moving to a new place, getting settled in, starting a new job took up much of my time. We lucked out in that our new family doctor, picked because we could find his office, recommended a pain specialist for my husband. THAT doctor was great. She got his pain under control and got him interactive with the world again. The first time he bent down to pet the cat, I logged that in my daytimer in bright pink. No joke, he was back! We could talk, and he would remember. She guided him back to life, and his psychologist was there every step of the way.
Think about it. He lost the ability to bend, lift and even to work. He's mourning all of these losses. Since he grew up on a farm, being able to lift stuff was a big thing for him. I've seen him try to lift a box of bagels and that nearly put him down.
His long-term disability company spent a lot of time trying to screw with him. The stuff they and other insurance reps did to him was abusive, plain and simple. They made him recount all of the stuff he could no longer do. Nothing was too personal for them. They sent him to a "doctor" who claimed that he could lift some larger number of pounds based on a QUESTIONNAIRE. They did everything they could to convince him he was crazy, and tried to drive him to suicide. He wrote the note, but rather than killing himself, he sent it to every government agency he could find online. The day I found that note, I was talking to my bosses boss or some such and could barely walk, I was in such shock and didn't know what I would come home to. Luckily, he was there at his computer. It took a couple of female friends (one who worked at a shelter, another who went to one) to get me to understand that the actions of the insurance companies were the same as those of an abuser. They try to isolate someone, then convince then that they are crazy/alone/not worthy/malingering/etc.
He couldn't handle any stress. He would sometimes just hide until whatever the stressor was would just go away. I spent a lot of time on the phone at work dealing with insurance companies, the lawyers, insurance boards, even the rental agency. It got to where I had to explain to my boss why I was spending so much time doing non-work things during work. My boss was the first one to say, as I described the actions of the insurance companies, that their actions constituted "attempted murder." Nowadays, that's called "murder by spreadsheet."
Once people started following me to and from work, and driving by the house to take pictures then run off when we approached, I had to go to the MIBs (men in black from various three-letter agencies) at work and talk with them. The one I worked most closely with said it was probably the insurance companies building their case, and gave me a set of actions to take.
I spent the next few years trying to suss out what the catastrophe of the day would be. I believe God spoke to me through the daily horoscope, trying to warn me to get ready for the day. Not that I took horoscopes seriously, but since I would read them for fun every day, that was a way to warn me. I spent those years praying that I wouldn't have to make a decision that would determine if someone in my family would live or die. Sometimes I didn't.
Eventually, Senator Bingaman issued a letter saying that the long-term "insurance" company's actions warranted a congressional inquiry due to the ongoing harassment of my husband. Our lawyer was eventually able to get every medical establishment we dealt with to remove the liens against everything we owned. The long term "insurance" company bailed on paying my husband, but at least they no longer harass him.
Social Security is the last man standing. They pay the disability stipend.
We are now stable. My husband and I have learned new ways to live. When it became clear that no one would hire a disabled guy (he was told that in interview), we decided to do the 1950's in reverse. Luckily, I have a good enough job that we can do that, and we still have friends living with us to help with expenses - and my husband - in case I'm not available. When my sister got terminal cancer and lost her job (her husband has to provide 24 hour care so he can't work), we were able to take them in. Our house is an odd mix of handicap placards and athletic gear. I walk with Team in Training to fight blood cancer (which my sister has). I have a psychologist on call. People at work know a lot of my situation since I decided that rather than comply with abusers' wishes, I would talk about it. We live day-to-day and hope the job and health insurance hold out.
My husband and I have been married 19 years now. We joke that we've survived my Mom's curse, and maybe it will be smooth sailing from now on. I hope so, but remain vigilant.