Saturday, February 2, 2013

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.

8 comments:

S.P. Bowers said...

I'm so so sorry for the difficulties you're experiencing. I knew the system was broken but it takes on a whole new light when a friend is suffering because of it. We'll be praying for you.

J.L. Murphey said...

I'll take all the prayers I can get to meet the goals I set for this month in B&W forum. This was the first two. LOL Now you know the rest of the story.

Zan Marie said...

Jo,
My prayer and thoughts and {{{{hugs}}}} are with you and your husband. I've been the care giver for elderly parents since I retired. And I'm slowly being drained of all my ablility to do the job, too. I know the problem. I don't have an answer.

J.L. Murphey said...

Thanks Zan Marie,
I don't know the answer either short of leaving the care of my husband and myself to someone else. That just won't do. I've spent the last ten years with my husband's parents and my husband. I wouldn't have traded that valuable time spent with them for anything. I know I need a vacation from it all, but now it would have to be an out of body experience too.

oc1dean said...

My only comment is from my former senator/vice president.
"The moral test of government is how it treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadow of life . . . the sick . . . the needy . . . and the disabled."
-- Hubert Humphrey
As someone from Australia asked me about health care reform in the US. My reply was;
The people shouting the loudest hate it but I really think they just want complete anarchy. Survival of the fittest and all, and since I no longer am in that category I should probably just reduce myself as part of the surplus population.

J.L. Murphey said...

Dean,
I understand. I don't want complete anarchy. I love this country and chose this country for my own. There are just some elements that I can't stand like jumping through hoops when you do what is right because others have abused the system. Never downgrade yourself to the surplus masses. You've paid your dues as I have.

As far as the health care reforms, I feel that people like us are on the losing end...totally against Hubert Humphrey's belief. I grew up knowing that families take care of their own like Diane takes care of Bob and I took care of my in-laws and my husband. I'm not asking for a free hand out. I've earned every penny.

Lara said...

I'm so sorry, Jo. I wish there was some way I could snap my fingers and fix this for you and your husband. For what it's worth, I'll keep you both in my thoughts. (((hugs)))

J.L. Murphey said...

Lara,
Thank you. I wish a finger snap would do it too, but this is a trial that we have to go through.