Saturday Saunter into Anger~ A Rant

I'm just irritated today. I read a post by Diane at The Pink House  on the Corner. She was asked to make a list of daily activities in the care of her husband who is total care after a stroke.

I did something similar couple of Sundays ago here. Although mine was a brush over my husband's care giving focusing on my schedule of what I can accomplish. Do the people that asks this question really understand what we do as caregivers 24/7? Do they think we sit on our hinny's doing nothing except for watching television and eating chocolates all day? I wish. Could they really afford to pay us? Not hardly, the bill would be outrageous!

By the same token, the powers that be wouldn't really hire someone when they can get it free. As caregivers, we give up the life we once knew. We say goodbye to a lot of things we used to have like sleep, vacations, and days off. To care for someone we love better than any nursing home could ever hope to, because we honestly care for them. I know because I did a short stint in those kinds of facilities. Not per a schedule of events, but as it is needed or wanted no matter what we have scheduled.

For years, I have scrimped, denied, and calculated every move I've made around my husband's needs. Scheduling and keeping appointments for fifteen doctors between Georgia and Maryland (just for him), medication lists as long as your arm and around the clock on-call care, monitors and alarms, and not to mention my own personal stuff or running a household. That's what being a caregiver is all about.

I've been his full-time caregiver since 2003. I sold my successful business consulting firm because I couldn't be traveling around the world anymore 75% of the year and care for him too. I took various part-time jobs as a culinary instructor, executive chef, writer and minister since then. Yes, it was my choice, but what alternative did I actually have? Could you see anyone else doing that job? For FREE or minimum wage?

I guess I could have had a live in college student. Room and board for exchange for services. And still, since my stroke I have been considering it again. We are honestly very private people and it would be another schedule to juggle. Is it honestly worth the hassle that might last twenty-four weeks if I'm lucky, before I'd have to go through finding someone else? Better to muddle through on my own. Believe me when I say I've searched for every angle and alternative.

Social Security has denied my petition again. The system is broke and no one know how to fix it. I don't mean to get political on this blog, but its the bureaucracy I'm fighting and I'm fighting mad.

They will willingly pay someone money per hour to care for my husband, but when I do it...forget about how much money I'm SAVING them. Don't forget I'm an RN too with 40 years experience! They couldn't afford me even part-time. Does it count for anything? Nope, not even a kiss my grits. All because I'm the loving wife. It doesn't keep my benefits intact. Mine have been slowly dwindling down to almost nonexistent with my husband's illness. I've checked into assisted living and nursing homes, and the cost is twice as much as we can afford short of selling everything we own. That would only care for us for a decade.

 When I broke my back, had a hip and knee replacement, and had to retire from my nursing career I had applied for disability and was denied then too. That's okay, I scrimped, saved, and went back to college to learn to do something else in my life. Screw 'em.  I thought, after my husband passes away there will be time to build it back up. I didn't count on a stroke disabling me. It seems I'm always saying screw 'em, I'll do it on my own except this time I can't and won't.

When does being a wife, mother, and full-time caregiver become a second class citizen? I've paid into Social Security for decades, but now they tell me..."Sorry we spent it all and you aren't qualified by today's standards." I would have been better off putting my money in a savings account. Earning simple interest I would have earned even more. If I continue fighting the system, I'll be eligible for retirement before its all said and done. Oh, wait. It will have gone bankrupt by then, or I won't have the quarters needed to draw funds because I've taken responsibility for the care of myself and my husband.

What is wrong with a society that allows this to happen? We are not building a self suficient life style but a dependent one. When hard working citizens get the shaft for doing what is right but not profitable. When it is easier to depend and lie to get what we want rather than what we worked for. When is it easier to step on the needs of others to make the almighty dollar to pay for a government already too big for their britches. Where it is easier to tow the line than to fight. It's okay Mrs. Murphey. Yes, you have worked hard all your life, but there's nothing available to you because you fall in between the cracks. To quote Howard Beale from the movie Network, "I'm mad as hell and I'm not going to take it anymore!"

Anyone know where a hemiplegic, who can't speak clearly with a husband that's dying can get a job? Oh, right I'm an indie author who might have another book published in the next two years. There's only a half a million of us out there to choose from. It only takes me half day to compose this blog. It only looks like it is effortless.

I feel my clock winding down and no help in sight. Have I got this last fight against the powers that be left in me? Only time will tell.