Marian

Sometimes it is possible for one's heart to break very quickly.

Tonight we had to go to a meeting at the assisted living where my grandmother lives. There was reason to believe from conversations that my father had had with the director that something was afoot - specifically, that she would be asked to leave the place where she has lived for almost seven years. And this is indeed what transpired tonight. I attended this meeting with my father, my mother, and my uncle. We were all quite awkward and quietly overemotional in our own particular ways. This was kicked off by the fact that the meeting was at 5:30 this evening, which is just about specifically my grandmother's dinner time. And just as we all entered the hallway outside the director's office,my grandmother came wheeling around the corner in her chair, sunglasses on per usual. She quickly ascertained that something was amiss, because four of us were there at a time when we're never there, and we were all meeting with the director instead of hanging out with her. Why they didn't divert her attention, or plan ahead for this, I don't know, and I really don't think that I'll ever find the need to forgive them for it. It was thoughtless and caused my family more stress than we needed on top of an already stressful situation. I've never particularly cared for Margaret, the director. It's not that I don't think she's nice, although I perceive it as more cloying, or even that I think she's particularly fake. She's just too much of something that I can't quite put my finger on.

Margaret - mealy-mouthed, sugary-sweet - listed off lots of reasons why this dismissal was happening, and repeated multiple times that she and the staff "love my grandmother". I didn't tell her what I could've told her, which is that she and the staff do not, not really. In order to love my grandmother, you have to be a lot more tuned in than they are. You kind of have to have an image of her cooking a pound of bacon, smoking one of her formerly endless cigarettes, or hanging clothes on a clothesline on a hill in Langley Park, wearing a faded smock (or housecoat. God, do you remember housecoats? Do they even make housecoats anymore?) because she never bought new clothes and never, ever threw anything away. You have to remember things like looking at her through the screen on the back door, because you were a weird little kid who didn't go outside a whole lot even though she really wanted you to and incessantly encouraged you to "get some air", and instead did weird-kid things like sit on the cold tile by the screen door, tracing the designs on and between it with your fingers, and looking out occasionally at your grandmother hanging clothes on the line. And maybe also occasionally you'd go out and run up and down the hill so people would leave you the hell alone about not getting any (smog-laden, DC summer) air, tripping on the tree roots that had grown out so many feet into the grass in all directions. Sometimes rolling down the hill was fun too, and that got you a "You're going to bust your head open on the picnic table," which was a brick red, peeling-paint affair with huge metal legs, but you never did.

I don't think Margaret the assisted living director ever saw or did any of that, so I can't say that she effectively loves my grandmother, and also I don't really want to share that status with her. I'm fundamentally opposed to the word "love" being thrown around sloppily, also, so maybe that's my problem. Love, to me, is most important, useful, and genuine when it's a verb for real, instead of the form it can take that more aptly resembles an intention or a wish. When it is real, it's something you actively, consistently, and effectively do, in spite of many challenges to the contrary - because it also isn't easy when you get past the Hallmark version. So in some current, thrice-removed way, the staff there do care about her, but it's very specific and contained, and I'm still really reluctant to share the love - as it were - with them.

Tonight, after Margaret clumsily and sugar-sweetly listed off all the reasons why my grandmother needed to move, I interrupted her and asked her some questions, because I used to be a senior services social worker and still wear that particular street cred proudly. I don't think she knew this about me, because to tell the truth I haven 't really been actively involved in my grandmother's care beyond regular visits. I leave that to my parents, because I don't think it's my place to go barging in when there are several competent adults involved. But my dad asked me to go to this meeting, and I did. And because I didn't want to sit there just breathing the air and I am not only inherently bossy and assertive but also conditioned to make myself useful, I went straight for the tough questions like I was representing a client, which I haven't done in a very long time but I was glad to see that I hadn't really forgotten anything. I don't think she knew that I could throw around terms like "continuing care retirement community" and "mini-mental status examination" and "activities of daily living" and "chronic obstructive pulmonary disease" along with their attendant acronyms without a whole lot of trouble, and not just to be pretentious, either. When she told me that my grandmother scored a 53 on the "assessment", I asked her if it was the mini-mental, remembering that I didn't think the scores on the MMSE went up that high. And she kind of blinked at me like "How the hell do you know what the mini-mental is?" and I didn't tell her for a few minutes because I can be bitchy that way and I was so angry about how they'd handled this whole little shindig that I wasn't interested in easing the path for her, to be truthful - ESPECIALLY when she started going on about how difficult her job is and how this whole eviction thing is her least favorite part of it. I hate giving Fs to students, too, but I have to, and if it started to really break me down I'd go back to waiting tables. First rule of the helping professions - do not transfer your own issues to your clients, please, which is kind of what my family was in this circumstance. Ick. And when I asked her when Victory Housing - a Catholic chain of assisted living homes - was going to get itself together and provide the "Level 3 care" that she says my grandmother needs so elders who benefit from a Catholic facility won't have to relocate into a secular home at their most frail, she gave me some bogus answer about how they don't want to get into dementia care, and how the staff would need training (um, that's a good idea anyway), because, you know, people with Alzheimer's disease are challenging to care for, and then you need a LOCKED unit, and the staff would get HIT by these rageful memory impaired people.

So I slid in there, again, very nicely, because I know it's ignorance and nothing more, that (a senior housing administrator!!!!!) perpetuating the myth that all people with Alzheimer's are prone to violence is unhelpful and inaccurate, and often when people with Alzheimer's strike out, there's something else going on - usually the caregiver's approach, although lots of people really don't want to deal with that because then it makes it their supposedly lucid fault. And I know this because I've provided and observed this care, both good and bad, and because I've walked the halls of many a dementia unit, including one that housed a 43 year old woman with early-onset Alzheimer's who had to wear a helmet, for God's sake. And lots of times when my interactions with people with dementia went wrong, it was something I did or said, sometimes because I didn't know any better. So I kind of know what I'm talking about with this woman who says she loves my grandmother. I almost wish I didn't, because it would make things much easier to be uninformed. I could take so much more at face value, and I wouldn't feel the stubborn need to go head to head with her for no reason other than my own grief and protectiveness, added to a stubborn dislike for letting things pass that I know to be mistatements or untruths, and a raging internal need to advocate for the elderly and others who don't have the voice to do so for themselves. I'm SUCH a pain in the ass.

Somewhere in the middle of this talk, my mother left the room in tears. She came back down to say that my grandmother was quite upset and confused, and that she had to go tend to her own mother, and something else about "boundaries" and telling her not being her place, and then she left again, clearly needing to cry some more. So I was left in a room with my father and my uncle, two people I love just about most on this planet, and this woman who I didn't love at all ever and at that moment really despised. And by the time the conversation was over, Margaret had handed my father a sealed envelope with "the offical notice, just because we need something on paper" that my grandmother's time at the facility had drawn to a close. She whispered this like some people say "cancer" when they don't want to risk saying it aloud and in the process make it even more obvious, just like she whispered "Alzheimer's" and "HIT". And she told us that we'd bought time, because she wasn't going to kick her out before this past Christmas, which really warmed my heart. And that her skin was at risk of breaking down, and that the girls try to wake her up to go to the bathroom at 10 p.m., but it doesn't always work and sometimes she's still wet in the morning. And that she doesn't really eat that much, but they can't weigh her there anymore because she can't stand on the scale. And how she really doesn't GET the purpose of the life call button around her neck, because sometimes she rings it a few times, when she's been TOLD repeatedly that it takes the girls several minutes to get to her, and she only needs to ring it once.

And although this all sounded very rational and reasonable to me, and I knew that it was true and that if her care needs couldn't be met there that it was our responsibility to work out a place where they could be regardless of how much we didn't want to do it, it was still right around this time that I wanted to reach across the desk and rip this woman's face off. I hated her tone, and the way she kept referring to my grandmother with her full name that no one in the family ever uses, and how I knew we all really just wanted the conversation to be over, so why didn't she just end it? But that really wasn't acceptable, so I steered the conversation to tangibles - things we could do and places we could go to help my grandmother, and the whole time I just wanted to say, "Cut this bullshit, lady." But I really need to watch myself when I get like that, especially when I'm a generation removed and my father and my uncle are really in charge, although I seem to naturally assume this role of de facto sibling, which is a weird thing in and of itself. The whole thing degenerated into a discussion of when we should tell my grandmother about her eviction. She's a pretty mouthy lady, and the words that came out of Margaret's mouth were all about how she herself was "thick-skinned, you can't be in this business without being thick-skinned," in a way that made me understand that she was indeed quite thin-skinned, and was somehow afraid of my 90 pound grandma going nuts when hearing the news, and running amok in the facility, turning her remaining 29 days into a rage against the administrative machine. I won't lie and say I thought this would be an entirely bad and not at all funny thing. We sort of left it open-ended, said we'd see how she was doing upstairs. My mother in her boundaried state hadn't told her anything definitive, but I knew already that she'd know, because she's really kind of insightful like that, mini-mental be damned.

And indeed, when we went upstairs to check on her before we left, she sat there half-crying, and then completely crying after we came in, asking what she'd "done wrong" and why, when she'd been the one to do it, they'd talked to US and not HER. And this is why I'll hesitate to ever forgive them (not that that will have any impact on anyone at all whatsoever, so really, what's the point?) for not diverting her attention when they knew we were coming at 5:30, which would have been really easy, even with the numbers of people they have to contend with. We were the only family there.

I didn't know at all how to respond to this situation. This is the type of thing that brought the term "flying blind" into the lexicon, because every word that came out of my mouth felt wrong and terrible, but I couldn't say nothing. So I told her that she didn't do anything wrong, and that it was no one's fault, and it all sucked, but we would take care of her. And my dad and my uncle tried to say reassuring things, and to buck her up, and to try to make lemonade out of a really, really lemony situation. And she said over and over again, "I don't care," although she totally does. She was embarrassed, and afraid. She never thought that the director would ask her to leave, and with diminished abilities to reason, it was just impossible for her to figure out why. I think when you have so few things left in your physical situation - when you can't take yourself anywhere or make yourself a sandwich, even - you must rely on those few things and people a whole lot more.

The truth is that we wanted her to die in this place, for it to be the last place she ever had to move. She loves it. She can navigate it in her wheelchair, and she can go to mass a couple of times a week. She hates the food, but she'd hate the food anywhere. She doesn't understand how it's a bad thing that the girls are helping her now that she needs a lot more assistance with getting into the bathroom, because they seem so happy to do it. Since they've provided her with the Depends, she figures that it's okay that she relies on them more than she did before, and the inability to get to the bathroom is a big reason why she needs to leave. Ten years since her stroke have dulled a ton of her thoughts and feelings and judgments about how to get from point a to point b. Tonight I pointed out that she does need more help getting out of bed, and that "transferring" is a big deal - one of the criteria that these assisted living type places use to determine whether you qualify for the price of admission.

"The girls help me stand by the bed," she whimpered, "because I'm afraid to do it myself. I can DO IT. I'm just AFRAID."

And this was one of the many times I had to look away because I was afraid I'd cry, although I didn't. I'm able to dig pretty deep for this lady. It's hard, though. She really doesn't understand, because she can't. She's gotten worse so incrementally, and they've filled in the blanks in the care quite well, so she really hasn't noticed, almost. She just scoots along, day by day.

She asked me time and time again where she will go, and why they didn't tell her she was bad, and how she knows she can get from the chair to the bed, and from the bed to the toilet, but even she seems to agree that figuring out she's got to go is a bit of a stretch at this point. "The message isn't getting from your brain to tell you to go," I say, and she nods in agreement. "They don't MIND helping me. They change me every time," she says, and I tell her that the girls don't mind. It's not them. It's assisted living rules and licensing and being rated a 53 that makes you a level three in a level two world. You're moving up the ladder on the island of misfit toys, in a sense. And it occurs to me that what we are telling her is that her physical self is failing, and her mental self too, to a point, and how do you tell someone that? How do you process that information about YOURSELF? We're trying to help her come to terms with this, and while I hear myself saying these things it appears that I'm helping myself realize it too. And it sucks. I told my uncle and my father on the way up to the room that when I'm 75 I just want to eat a big bowl of ice cream with a few too many pills in it, so I can nod off and avoid this whole disintegration thing. I don't think I could handle it with the grace that's required not to drive other people totally insane.

My father and my uncle left when I got up from the chair and picked her nightgown up off the bed. I wanted to get her out of the pants that had a bloodstain on them from where she banged into something or the other because her skin is so thin. They kissed her goodbye, and I busied myself folding and refolding the nightgown. She asked me what I was doing and I told her we were getting her ready for bed. She went to the bathroom, and an aide came in with breathing treatments and quickly leaves, not offering to help with the diaper or nightgown change. I wondered if the news had been shared with them, because it appeared she was letting me handle the bedtime detail on my own - something I'd never done before.

After my grandmother finished up in the bathroom, I switched up her day clothes with the nightgown. I asked her if she wanted to watch Jeopardy, and she said yes. And so we sat like we have countless times before, and watch the show, and she calmed down. I was completely out of my mind internally, but managed to stay chill on the surface, even pretending to agree when she said, "Boy, that Alex stays good looking, doesn't he?" Things got back to normal when she saw Secretary of Education Margaret Spellings in a video clue, and said, "Boy, she's busty."

Nuts. Life is so nuts.

She was tired then and I needed to get her into the Depends that she sleeps in. I laid it on the bed, and hoisted her on the mattress, because her paralysis on one side makes it tough to work anything out when she's sitting, and of course she can't stand. After she was flat, I tried to fasten the thing, and even though she's so frail I had trouble getting it closed, due more to my clumsiness than anything to do with her. And we laughed because I don't have a damned clue what I'm doing, and that broke the tension for a minute. Meanwhile, as I pulled the nightgown down over her skinny legs, and pulled the blanket up so she'd be warm, she looked up at me and smiled and something else broke off inside of me.

I am running out of pieces to break off, and I wonder why there is so much loss in my life. Old dogs, dying people, my own gray hair - no babies, nothing really growing except for a daily sense of being so tired lately that everything new that happens is just another brick in this particular wall. I didn't ever want to carry the mantle of "caregiver" because I don't think I'm particularly good at it, or certainly not "martyr", but in this case I know that I would do absolutely anything that this woman needed from me. I don't often buy into the concept of "owing" anyone, but if there's anyone that word applies to in my life besides my parents, it's her.

Driving home from this nightmare the other night, into an evening that would only get worse but thank God I didn't know that then, it occurred to me that it is a good idea to do everything you want to do, now - to soak up the joy, because later on it'll be good to have even more of a reserve to carry you through the pain that's bound to come eventually. So you just, really just, should do it now.

Comments

[joanna]

Oh god, you have described what it is like for all of us. This should be published somewhere or many somewheres because it shows the exhaustion, the confusion, the insensitivity --the whole world of being a caregiver and a caregiven.

[Jen]

Stay strong, sister, but if you need to let it out some more I am here for you. Wow. I don't think you could have done any better. You are a good friend and a great family member, kid. You do what you do because you're smart enough to know how. Any man who doesn't try to snap you up and make that long-awaited baby should go ahead and eat that big bowl of pill-laden ice cream himself.

[Kathy]

Laurie, This is a wonderful essay, full of great details. Hope you don't think me presumptuous, but I think you should bring it (or some version of it) as your next submission for class. -Kathy from your essay workshop