Having been born with a life-threatening disorder (SMAS) that nearly killed me when I was 13 years old, I received life-saving surgery back in 1974 that enabled me to not merely survive but to flourish, despite some serious complications that required 60+ surgical procedures since that time for a wide variety of side effects (including kidney stones, intestinal bleeding, hernias, etc.).
The condition pretty much bankrupted me and my family; I received generous assistance from caring friends and relatives, but it’s taken a lifetime to get out of debt.
For those who don’t know, there is a serious problem with healthcare in this country. Now is not the time to get into what needs to be done to even slightly improve the systemic problems that have plagued the medical professions and the health insurance industry. Suffice it to say, when you are considered “too well off” according to the government to receive any kind of sustained assistance, but not well off enough to afford long-term care, you’re put in a position of trying to come up with a practical patchwork plan that will carry you to the next level up, rather than six feet under.
As I have written recently, I have become the primary caregiver for my sister, who suffered a life-threatening episode in mid-November that kept her in the hospital for a solid month. Both of us have been familiar with the role of caregiver: We both cared for my mother who battled small cell lung cancer for five years before succumbing to the disease back in 1995. My sister has also been by my side for most of those 60+ surgical procedures, and anytime she’s been sick, I’ve been right there for her.
Having recovered from four surgical procedures myself within a three-month period ending the first week of November, I was prepared to go face-to-face with all of my sister’s caring doctors when she was hospitalized on November 13th. When she came home, I knew that I would have to summon the strength to take care of her the best way I knew how. Fortunately, upon her discharge, she was to get both physical and occupational therapy, and I was told that she’d be getting a home health aide for four hours a day, three days a week.
Well.
The first week, the home health aide services kicked in a little late. She started on Friday, December 18th and was a nice enough person that we decided to keep her on. She returned on Monday, December 21st. But we were told she couldn’t make it on Wednesday, December 23rd, so she returned on Christmas Eve for four hours.
Last week, she came on Monday, December 28th. Wednesday the 30th came and… no aide showed up. I called to complain, and I was told that the aide would return on December 31st; they hadn’t heard from her and couldn’t imagine why she didn’t show up.
New Year’s Eve came and no aide showed up again. I was told that the aide would return on New Year’s Day. New Year’s Day came and nobody showed up.
Well. Having been raised in a Brooklyn household with a mother of Greek descent and a father of Sicilian descent, I learned all the Greek prayers and all the Sicilian curses growing up. All I can say is that every Sicilian curse I knew came flying out of my mouth and every permutation of the F-word was screamed loud and clear as I ranted for about a half hour trying to get a hold of a real live human being on New Year’s Day wondering WTF was going on! Finally reaching somebody, the dialogue ensued:
Me: I was told that we were going to get a home health aide three days a week for four hours a day. The first week, she shows up once. The second week, she shows up twice, but she does not show up the third day. This week, she showed up once, and I was told she was going to be here on the 30th, then the 31st, and then the 1st. Nobody has shown up. What the hell is going on here? My sister needs help!
I take a breath.
Me: This is not directed at you personally, but do you understand: My sister needs help! I am a 60-year old guy who takes care of her but I have my own disability issues; I’ve got a brother and sister-in-law up the block but they are older than me! At some point, something’s gotta give!
Representative: We’re sorry for the inconvenience, sir.
Me: Inconvenience? This is absolutely outrageous! It is unacceptable!
Representative: Yes, I know, it is unacceptable and we will try to get a replacement for you today.
Me: Yeah, right, on New Year’s Day you’re going to find somebody on the fly to come here and to help take care of my sister! What are you kidding me?
Representative: We know that your sister requires assistance and she is going to get it!
Me: Well, right now, my sister is getting stugotz!
Representative: [not knowing what “stugotz” means] … Okay, well, we’ll try to get her some assistance today!
The home health aide never showed up on New Year’s Day. We have been promised a new home health aide today. We’ll see if the new aide shows up or if my sister ends up with stugotz again!
