Arthur’s note: The following is a guest post from my Wise and Wonderful Wife, Karen. And she’s not stupid at all.
Throughout my life, I have always prided myself on being a smart person. I was the kid in school who always sat near the front, paid attention and got A’s on my papers (plus extra credit.) If I didn’t know or I didn’t understand, I asked questions. I think the Internet was invented so I could look up stuff I don’t know or can’t remember. People count on me for knowledge and advice. I was even smart enough to marry a smart man (at least the second time), who makes me smarter.
But now I feel more incompetent than I have in my almost half-century on this planet. My mother is dying, and I have no freakin’ idea what to do.
I am trying to navigate a sea of financial, medical and legal matters, from nearly 600 miles away. I am trying to do it in tandem with my sister, who lives 300 miles away from Mom and me, and who works ridiculous hours at a retail job she hates. I am trying to do this while juggling a full-time, high-stress job, while I juggle the needs of four children, several of my own medical issues, and the stress of a talented writer husband diligently looking for permanent work.
I worked in a nursing home while I was in college. At the time, it wasn’t a bad gig. I made a dollar more than minimum, worked 7-3 so I still had a social life, and worked with some fun people who made the time a little more interesting. For years later, my parents and sister would still tease me about some of my patients, repeating stories and keeping me updated on who passed.
Even though this was the “luxury” nursing home in the area, I vowed that I would never put my parents in one of these places. I’m sure many people have promised the same.
Despite an extensive history of medical problems, my family members have been fairly fortunate in their deaths. My mom’s mom passed away while I was in high school, after a few months of complications from a lifetime of diabetes. My dad’s mom suffered cancer, but we were blessed that she died just 5 days after her second diagnosis, painlessly, when a blood clot traveled to her lung. My dad’s dad suffered a stroke and died 2 days later. My mom’s dad, unfortunately, had lung cancer and ended up in the county home for about 6 months. My dad died instantly from a massive heart attack at 56.
So when my mom suffered a heart attack at 54 and a worse one at 56 that resulted in triple bypass, I felt some sense of relief knowing that she would likely never suffer from a slow, lingering disease. I was certain that at some point, she would suffer another heart attack and she would be gone. I never dreamed she would survive a third heart attack, a week before her 72nd birthday last year. And this time, there was nothing that could be fixed. The clock started.
Since then, she has lived the life of a cat – running wildly like a teenager when she had the energy, and then crashing hard as payment for playing too hard. I alternately worried about her constantly, and then dismissed her as not needing my concern, depending on her actions. (I refuse to discuss the negative effects of the so-called boyfriend on the situation.) We have known she was slipping, but she is a stubborn, independent woman and we allowed her to do for herself with a little outside help. In November, her physicians recommended she enter into Hospice care, which by definition is a diagnosis of a life expectancy of 6 months or less. The clock was now moving faster.
I don’t know what happened at this point, whether she began to give up, or her multitude of health issues began to complicate each other. The Hospice care team is awesome, keeping us acutely aware of even small changes. But she started to spiral out of control, selectively choosing her medications, eating little, sleeping constantly, and losing touch with reality.
When her blood sugar dropped to 28, it was time to take immediate action. My sister and I worked diligently to find the right assisted living facility for her new home. We found a good home for Abby the pug, her constant companion. We figured out the logistics of getting her moved, thanks to the kindness of hired strangers and one crazy stalker. We prayed we were done for a while, except for cleaning and selling her home.
But after a week’s stay in the inpatient Hospice unit, we’re back to figuring it all out again. They want to discharge her into the care of a full-service nursing home. No doubt she needs it, but financially, this is a whole new ball game. From what I have learned, the government doesn’t like to give you money if you have some. Assisted living is private paid, whereas nursing home care is often funded by Medicare. And if Medicare pays, they want to make sure they get it back from you, in the form of your home, your assets and if need be, your first born child.
So I am stupid right now. I don’t know how all of this works. I can’t get answers fast enough from an attorney, and I’ve learned not to believe much I read on the Internet. I don’t want to be a grown-up. I don’t want to be in charge. I want my mom to figure this out and make everything better.
But she can’t. And I can’t stop the clock.