My grandma is a bad ass. She’s also quite fragile. We have this in common, my grandma and I, this mix of tough and weak, strong and broken.
She’s not a saint and I don’t idolize her, but I admire her and love her in this big, surprising way.
She’s a survivor. Born in eastern Kansas in 1922, she grew up in the heart of the dust bowl. (Don’t know much about the dust bowl? Read this.) Her mother died when she was still quite young, while my dad and my aunt were kids. My aunt, her youngest child, took her own life in 1979, a horror that no parent should ever endure. When my grandpa died a dozen years ago she grabbed my dad by his ear, got right in his face and said, “I am next. Do you understand?”
She’s a total smart ass, which is my favorite thing about her. It’s good to know that I come by it honest. She didn’t go to college (It was the 1940s, after all.), but she is fiercely intelligent and well-read. She and my grandpa worked hard, were careful with their money, and built a sizable estate to ensure a comfortable retirement. She was opinionated, stubborn, and most of all, a woman who was not willing to take shit from anyone. She is, in some ways, all of those things even now, but time has taken a toll.
So when the people at the facility where she lives treat her like an idiot or a child, or she is unsafe, or she is forced to live in such a way that she is unable to maintain her dignity? I get angry. Like, Mama Bear angry. Furious.
(Before I continue, you should know that we are actively seeking a new facility and will move her to the best place we can find as soon as possible, and yes, we will be making reports and filing complaints with every applicable agency.)
My grandma has lived for over two years at The Montebello, most of that in independent living. Things were fine there; she required more of an assisted living arrangement and with my sister, Erin, as her primary caregiver, that’s what she got. We did see some problems. When Erin was out of town, they insisted on giving my grandma her meds on their schedule, rather than the one prescribed by the doctor, but it wasn’t a big deal and we assumed we were catching some attitude from one crabby nurse.
She fell out of bed a few weeks ago and the day that happened, the alarm bells started ringing and they haven’t stopped since. For her part, my grandma was wearing her LifeAlert bracelet when she fell but didn’t remember and never pushed it. Fortunately her downstairs neighbors heard her banging on the floor and someone went to check on her. They proceeded to make some poor choices.
- They called my sister, as the chart indicates they are supposed to do, but she was out of town and they didn’t get an answer. So far, so good.
- They called my mom next and again got no answer. This is the next thing they are supposed to do but as my folks live in Maryland, it’s more of an information sharing endeavor than anything. But still, it’s all good.
- They said they called my dad. Now, I don’t know about your cell phone but mine tells me about every call I receive, whether I answer it or not. No such call was made. So that’s one lie.
- They never called me, even though the instructions in her chart indicate that they should call all four of us. I was 3 miles away from the Montebello, asleep with my cell phone right next to my damn head, while my grandma was alone and in pain in an ER downtown. She was there for over 8 hours before I got to her.
- We have promised her that she’ll never have to go to the hospital again, that we will keep her comfortable at home. She doesn’t want to be here on planet earth anymore and there’s not much point in taking her to the hospital when she’s ready to die. The Montebello would have no choice but to call 911 in a situation in which there was no family member available to take over, but there was. I could have been there in 10 minutes. Also? The reason they sent her to the hospital was to make sure that her left hip wasn’t broken, that hip was replaced 3 years ago and could not have been broken. If they had called me, I could have told them that tiny but oh-so-important piece of information and spared a lot of people a whole lot of trouble, especially my grandma.
- She fell out of bed again. This time, she remembered about the button, but she wasn’t wearing her LifeAlert (no need, right?), so she tried to push the nurse call button. It was on the bed, clipped to her pillow, and she couldn’t reach it. She lay on the floor for (as near as we can tell) about 6 hours before anyone came to check on her. Can you imagine how that felt to Erin and I, both of us asleep and cozy in our beds just a few minutes away while she was cold and uncomfortable for 6 hours? I almost lost my mind when I found out about that.
- The staff’s response to the call button is hit-or-miss. When they were leaving one evening early this week, my parents (who are in town to help us fix this disaster) saw six call-lights on in the hall where my grandma’s room is, and no staff in the hall, in any of the rooms, or even at the nurse’s station Sometimes, if she presses the call-light because she needs help getting to the bathroom, no one comes and she is forced to soil herself. How’s that for some slam-dunk end-of-life dignity preservation?
- The staff scold and nag. They bug her endlessly to eat more (more on that in a minute), walk more (which she’s not supposed to do without help, which is not readily available), come out of her room more, blah blah blah. They wake her up in the morning by throwing on the lights and tossing clothes at her, like she’s in fucking drug rehab or prison or something, instead of an elderly adult who has reached a stage of life during which she needs more help than before.
- Her weight is very low, no doubt about that. It’s hovered in the low to mid 80s for several years. When she was admitted to the health care unit, they wrote down her weight as 71 pounds. She hasn’t had a moment’s peace about that since she got there – eat eat eat! (They harp on it constantly with us, too.) Honestly, does anyone respond well to nagging? Or there’s the scolding – some actually cluck their tongues at her…tsk tsk tsk, Marjery, you didn’t eat enough! Are they trying to make her afraid that she’ll be punished if she doesn’t eat? Also, that 71 pounds? Complete bullshit. When they weighed her earlier this week, she was 88 pounds and someone changed the chart so that the last weight was 76 pounds (still wrong, but a little less wrong) instead of admitting that the scale was mis-calibrated. I am all joyful at the prospect of reporting chart falsification to the state licensing authority.
That’s the tip of the iceberg, but I’m sure you get the idea.
My parents and I arrived at The Montebello last night while my grandma was eating dinner. That dining room is so unbearably, stiflingly hot I almost can’t bear to be in there, but the chairs are comfortable and the coffee is surprisingly un-terrible. We chatted and she complained again about the constant comings-and-goings in her room, in particular someone she called “some kind of manager” who had been in her room for many hours. When we walked over to her room, we found a paper titled “reminders,” which was more nagging in written form: eat more, exercise more, press the call button if you need help.
Bear in mind, we have not only complained about these things amongst ourselves. We’ve talked to quite a few people, both over the phone (my parents) and in person (Erin and I), making it very clear that she is not to be told to eat or exercise (Erin and I can, surprisingly, always get her to eat and exercise. I suspect this has something to do with the fact that we are nice to her.), not to be bothered with a bunch of therapies, and above all, not to be scolded. Basically, we want them to provide for her safety (which they are not capable of doing), administer her medications (which are often late), and otherwise leave her the hell alone and let us, her family, worry about the rest. Again and again, they don’t listen.
Oh, and by the way, none of this would be OK no matter the cost, but this place costs a shit load of money.
My mom took that nagging, scolding piece of blue paper down to the nurse’s station and asked which manager wrote it, and the nurse said, hey, you’re in luck, he’s still here! So she called him, and he came, and wow what a bad idea. For the sake of the story, I’ll call the man by his first initial, A. It pains me not to use his real name, but I’d like to walk away from all this knowing that I took the high road.
First, he didn’t want to talk to us for fear that he would violate HIPAA. My mom asked my grandma, “Margery, is it OK with you if he discusses your medical records with us?” which, as a hospice nurse for many years, my mom knows is entirely legal, but A. has apparently not sought to trouble himself with such esoteric and useless information. After all, he only deals with HIPAA a few times a day. Why clutter up the old nut, huh? He claims he can only discuss health information with her power of attorney, who is my dad, so my folks head upstairs to my grandma’s apartment to find the POA paperwork.
A. begins shuffling through the POA paperwork, actually reading it, and that was perplexing and frustrating (he was a hemming and hawing kind of guy, anyway), and I tried to tell my parents that A. was not the guy we wanted, and I snapped at A. that it was a basic POA and let’s move on, and my mom was being abrasive and then my dad got so angry he yelled at A. and had to leave the room. (If you have the feeling that I am sliding past a few things here, you are correct, but remember that I once confirmed that, while I highly value honest communication, there are lines over which I hope not to step.)
You know what it all reminds me of? It reminds me of trying like hell to get help for Carter and hitting one brick wall after another. It reminds me of being in the hospital after surgery, delirious from pain, and being told to stop crying. I need to know: where is the compassion? What has happened to our culture that we treat young, sick, elderly, disabled, or otherwise in-need people so badly? (I actually know the answer to this question and it makes me boil: $$$) Somehow, leaving an 86 year old woman on the floor, shivering, for 6 hours is OK. The staff were all very sorry, but really? If they actually gave a shit, it wouldn’t have happened. They would have made their rounds and helped her back to bed long before dawn. (I suspect they skip nighttime rounds until it’s almost time for day shift to come on.). If the people who earn a profit from The Montebello had any compassion, they would hire more staff and pay more to get better qualified people. Profit is fine with me, but profit at the expense of the comfort and safety of people? No. No no no.
By then it was plenty obvious that the problems were not things that we could solve with more phone calls and meetings and as A. blah blah blah’d in the background, my mom and I mouthed at each other that we were going to move her. We finally managed to usher A. out of the room, thank goodness, because I was just about to stand up and flat-out tell him to leave. Some people do not know how to read social cues (and I was doing everything but flashing a giant “go away” sign at him), and how that kind of person ended up in that job is a mystery to me.
I can’t help thinking, too, that if a family as well educated as mine, with as many resources as we have, cannot access good care, what the hell is happening to the lower-middle-class, working-class, and poor when they reach the age at which they need a great deal of care? I shudder to think of it. Worse, my grandma has the four of us, plus Brian and my sister’s partner, caring about her and actively advocating for the best care. What is happening to the people who are alone? Is living to an old age a prison sentence? What sin did she commit that she deserves this?
I realize this is a very long, ranty post and I’m grateful that you read this far. Two anecdotes so you’ll know the amazing Margery Mae Jones a little better, and then I’ll be finished.
When we got her moved into her private room down in the health care unit, there was a tiny TV that she couldn’t see, but her giant tube TV wouldn’t fit. My sister called my dad who told her to go buy the largest flat-screen TV that would fit into the available space. Off she went to Costco and I arrived as Erin, her partner, and a friend of theirs were getting it out of the box. They lifted this behemoth of a TV onto the vanity and my grandma said, “Now that’s what I’m talking about!”
Last night, describing her many hours with A. and all his constant nagging and scolding, she said, “It gets a little old after the first hour or so.”