Friday, July 20, 2012

I have a pill stuck in my throat, in that awkward way that happens every once in a while.  I sip from my water and realize I'm holding back tears... it isn't just a pill that's stuck there, but all of my feelings. 

I've just come from yet another late night heart to heart with the woman my grandmother sometimes has become.  This woman is sad: not just sad, but heartbroken, morose, devastated.  She has lost her children, and doesn't know why.  She's alone in a house she doesn't recognize with people who used to be her family and now feel "worse than strangers, because they're SUPPOSED to love me."  Her long-deceased siblings visit her often, but instead of comfort, they taunt her with their silences at the atrocities she's faced: she is sure someone has stolen her two little boys.  Not just stolen them, but given them away, without her having a say so, without so much as an explanation... and it's those supposed loved ones who allowed it - perhaps enabled it - to happen, and she can't forgive them for that. 

As one hour slips into two, we're still at a stalemate: I tell her that those of us who love her are out here in the dark searching for her with flashlights, unable to reach her, but continuously shining the light of our love in her direction, hoping against hope that she feels it, however briefly, and knows that she is safe.  "They aren't searching for me anymore," she responds, "They've all found other people to love, and I guess it's only natural that there would have to be a loser, but I'm not glad it's me."

I would do anything for you, I tell her.  All of us would.  "There is an empty doorbell that says you are lying," she tells me.  "An old TV I can't see that sits in the living room mocking me, stairs that I can't climb yet have no lift like I've asked for repeatedly, and my boys are gone.  All of that shows me more than the words you say." 

I can't argue with the last - the boys are missing, and no matter how I try to word it, to make her understand, it is always our fault that they are gone, if not by active trickery, then at the very least through passively allowing it to occur.  I can't even defend the defensible position - that the television isn't broken, it's her eyes - because she already knows the facts of that, but it doesn't matter.  As to the others, I can't help but agree: there is no reason that my uncle's aversion to the 'mess'' of the stair lift should outweigh her sense of dignity and ability to shower regularly, but it does.  (I know that part of his reluctance is due to his thinking that this is not a permanent state of health for my grandmother, or that the life would be just as dangerous to her as the stairs, but I'm not sure I agree.)  And the silent doorbell (/telephone) is a two sided coin - there are some who are close enough, yet do (in my mind) too little, and some who are too far away to do much.  Then there are others who want to help, but know that too many people - and at times 1 extra person is too many people - amps up her anxiety and backfires instead of helping.  So, it's complicated, but she can't understand that right now.

Right now, all she knows is that it's three o'clock in the morning, and she can't sleep.  Because she's never been "more alone in her life", even though I am sitting right there.  Even though I am always sitting right there. 

If I leave for the afternoon to take a shower, I leave 70-80% of my brain here, spinning about what might happen while I am gone, and who I will find when I come back.  If she's in a good way when I'm leaving, I hate to go because she might not be alert and focused when I return; if she's having a bad day, I hate to leave because sometimes I'm the only one who can get through to her.  When I come home I might find the lady I've always known, who asks me about the people I've seen while I was gone and seems glad to know that the shower helped my neck so much, or I could find the silent starer, who slides little digs in about how "I thought you'd forgotten I'd existed" because I've been AWOL for less than 10 hours. 

Back in college, I was going home every weekend out of sheer exhaustion - it was one of the concessions I might to my chronic illnesses, because the dorm would be too noisy, that I'd go home to sleep and shower every weekend, and come back on Sunday nights.   During my miserable freshman year, the year I was so depressed I nearly dropped out, when my roommate and I could not have been more poorly matched and my classes were overwhelming, and I couldn't figure out how you're supposed to make friends as an adult (still don't get this, btw), somewhere around Sunday afternoon, I would start to get a feeling in the pit of my stomach that would make me slightly nauseous.  It would build during the hours I spent getting ready to go back, and all of the stress I'd washed away in the shower would come crushing back down on me.  That anxiety, that sense of dread, was one of the worst feelings I've ever experienced - it was more than just 'back to work blues', it was utter despair some days - but I would face it and get on with my week, and my work, no matter that all I wanted to do was to give up, tell my mother to turn the car around and go home. 

I feel some of that same anxious dread so often now, and find myself wishing that I could just walk (RUN) away and let things happen as they will, without me.  Why do I have to be here, listening to her heartbreak, while she breaks my heart?  Why do I have to be the one she can spill out all her worries too, when I don't have any of the solutions she's looking for?  Why does no one else see that her feet need to be up, that her hearing aids aren't in, that she's mixed up and you're just confusing her more by giving her all those options?  How can I sit here and be both her "most trusted helper/the best nurse on this ward" and "obviously plotting against me, or at the very least not telling the whole truth"?  Why are all the people I need to support me actively making this harder? 

I just want to disappear, but ... I can't.  At the same time I want to be the person she can depend on, I feel completely undependable, as if I'm trying to be a pillar, but I'm standing on pillows.  I don't feel up to the task, definitely.  All the areas I am most confident in - I can organize these appointments and medications and nurses visits and bath times like crazy, y'all! - feel inadequate, because there's so much that I can't do.  On a good day, I can listen and empathize and search for non-existent prayer cards for three hours, and on a bad day, I find myself thinking that it's a good thing I'm not a parent yet, because this getting up at 3 in the morning to make the first of three breakfasts or balance the checkbook for the 24th time this week is bullshit.  On a good day, we sit on the porch, and even though she's not herself, the pure unedited joy I can read in her face as the cool breeze finally reaches us is more reward than I could ever ask for; on a bad day, I mutter sarcastic answers under my breath to every little dig and jibe she aims at me, even though I know that whispering and sarcasm just antagonize her.  (I do try to keep it under my breath, but really, sometimes you just want to be like: Yes, yes Grandmother, I do want to "end our relationship", which you can obviously see by the way I'm making you yet another cup of tea, because you completely ignored the first two I brewed for you and let them get cold.  That's why I've given up showering more than twice a week during the hottest days of the decade, because I "hate" you so much. Grumble grumble grumble.)

There are no answers to be found here, really: she's not going to magically wake up tomorrow and remember that we've always and only done our best for her because we love her, and I'm not magically going to be able to ignore her little poison darts when they're aimed at my heart.  It's not ok, but it is what is.  It is our reality right now, and I'm going to live through it.  (Now I just have to keep repeating that to myself until I believe it.)

On a more positive note, I can not thank you all enough for your kind words on my previous post (or any of the posts concerning our current situation, for that matter): I think it's obvious that I am having a hard time here, and I hate to be continuously on and on about it, but it's pretty much all I have time to think about right now. I am humbled by and so grateful for all of your supportive comments ~ knowing that so many of you have been through this/similar issues is both tragic and heartening: I am sorry for you and your loved ones, but so glad that I'm not on my own here. Whenever I think about closing down this blog, because, let's face it, I don't utilize it as much as I could/should, and sometimes it's a pain in the ass to even think about posting, I always come back to this: so many of you are here when I need you, when (almost) no one else is. Whenever I think that I am most alone, when I am sure that no one at all will understand a word I am saying, you somehow manage to make me feel as if the things I say matter to you, as if I am part of the 'real world' again. As if all the crazy I am feeling might somehow be a little bit normal. So, thanks for that. (And all of your suggestions: you can be sure I am taking them all to heart.)  A thousand thanks, NTE

Thursday, July 12, 2012

Damn, this is hard.

Things are so much better - and so much worse - than I expected.  I don't know what I expected, really: all of the literature the hospice people give you sort of makes it seem like there's a straight line of decline to follow right through their showing up until she passes away.  But that's not the way it's going at all, which is excellent, of course, because she's still here, and not excellent, of course, because sometimes she suffers so much.

The hospice people say (over and over again) that their goal is to ease her suffering and to support us.  I know they are trying, but I'm not always sure they're meeting those goals.  Of major import to me is her suffering - if it were from physical pain (and they warn us that that is likely still to come), it'd be easy to address*, as they've given us all sorts of happy drugs and the lessons on how to administer them should she want them.**  But it's a mental sort of suffering that's affecting her, and all of us, the most.

She forgets who I am now.  Just a few weeks ago that would have been unthinkable.  Now I am my mother, my 2nd cousin, her sister, my sister, her daughter, the nurse, the hotel concierge, a random office worker, the social worker, the hair dresser, the lady who comes to give her a bath.  Some of these are quite reasonable - I have a similar look/manner as my mom, I have given her a bath in the past, etc - but if you're telling the woman in front of you (who is sitting in a wheelchair) about your granddaughter who is in a wheelchair, and who visits you sometimes, then all is not well. 

Worse than the forgetting though, is the paranoia.  The feeling that we're teaming up against her, and the repercussions of that.  This morning she woke with the idea that we were going to her mother's funeral.  Her mother has been buried for 90 years, and while they say to agree as much as possible, I couldn't very well take her to New Jersey for a funeral that occurred 6 decades before I was born.  I can see now, with hindsight, that I should have just kept going with it, for as long as possible, but sometimes that comes back to bite me in the ass too, so I don't know where to put my feet, most of the time. (Also, in my defense, it was 4:30 in the morning.  And I had gotten less than 1 hour total of sleep since 4:30 the previous morning.)

Usually, I will just play along until it is either time for her to nap (which is every hour or two, most often) - in which case she may forget what her previous plan for the day was - or distract her enough that we can move on to other things.  But this morning, distraction accomplished nothing - she wanted to clean the house for the post-funeral visitors (at 4:30 am), not eat breakfast or have coffee.  After having to tell her no for numerous activities that she claimed to want to do next - stuff she or I can not physically accomplish, like climbing the stairs or hanging tablecloths out on the line - I could tell I was getting into trouble.  Worse, she showed no signs of slowing down or needing a nap, and now there were only two hours for her to get to her actual plan for the day - a necessary doctor's appointment.  (And it takes that long, with breaks built in, for her to get ready for things.)

So now I have to tell her that she's got to get dressed, and that she has to go to the doctor's. 

"Do you think I'd choose a doctor over my own mother??" 

"No Ma'am, but that mass isn't this morning - we don't have any mass this morning to go to."

Cue horrified look, as if I have just personally, stripped her dead mother bare for the world to see.  "She's in the coffin two rooms away, and I'm supposed to just leave her there?" 

"But she's not in the coffin, Grandmother, at least not in the house, right now. She died a long time ago, and was buried then.  She's not here right now, so we're not disrespecting her."

"Do you take pleasure in reminding me that I've been motherless for most of my life.  Do you think I don't know that? "

"No, ma'am.  I'm just saying that it's ok to get ready for your appointment, because... that's what we're doing today."

"Well, it's not what I'm doing."

This back and forth only got worse, as every sentence was another foot in my mouth.  Eventually she was sitting and (quite pathetically) trying to straighten out her bed with her one injured arm and her other hand full with her cane, on a footstool next to the bed.

"Here, Grandmother, let me help you up from there: it's too low to work from."

"That's not the only thing that's low today."

That's the thing: my Grandmother has a viper's tongue, when provoked.  And I've only done it twice in my life, really, and both of those times have been in the past week, and have occurred when I was trying to be helpful.

The other night's episode had me fleeing to the front porch so I could burst in to tears, call my mother, and burst into tears again.  She was upset with my uncle (who is her main caretaker, and thus, her main target when paranoia or delusions strike), and was convinced that he had sold her two youngest children away.

 This is a common theme when she's delusional - the hospice people told us that usually, people see their departed loved ones and it's all "hooray and glorious and sweetly sentimental".  Not for my grandmother.  For her, it's people who've been dead for 70 years showing up and standing in the corner, refusing to speak to her.  It's little boys (she had seven) disappearing and nobody helping her find them.  It's wondering over and over and over again why you can't find this one or that one, or why they would walk through the house without saying anything to you.

So heartfelt reunions, she's had a few, but mostly, her hallucinations are upsetting to her, and leave her stressed and confused.  As happened the other night, when her delusions and viperous tongue reached out and spit at me for the first time.

She was against my uncle, which means he can't even go in the room to give her her meds without raising her blood pressure (which, since she has congestive heart failure, is not optimal). So I went in to get her dinner dishes, and she starts telling me that I need to tell her the truth. (Here's the thing: telling her the truth is actually the WORST thing to do, all the professionals warn me.) And when I say that I don't know what she's talking about, I am all of the sudden 'picking sides' and 'making living here unbearable.'

'Grandmother: I don't know what you need, tell me how to help you.'

'I just hope your conscience is clear, NTE, because if you think about it, there are some horrible things happening here, and I hope you're not a party to them.'

'No, ma'am.  I'm not a party to anything I'm ashamed of.  I'm only here to help you, if I can.'

'I hope that's true.'

20 minutes later, as I'm giving her a kiss goodnight... 'You know Judas kissed Jesus before he betrayed him, right?'


So her memory may not be up to snuff, but her pointed tongue is still as finely sharpened as ever. (And all my aunts and uncles, and the sister who lived here as a teenager, are feeling just the teensiest bit justified by my experiences: not that they want her to hurt my feelings, but "I told you she wasn't always so sweet" has been spoken more than once.)

Hospice doesn't prepare you for decapitation or slow bleeding, however.  They just say things like "try to play along, if you can", and "she shouldn't be upset, if possible" without realizing that those are two contradictory pieces of advice.  And while I know she doesn't really, in the scheme of things and our relationship and lifespan together, believe that I am a Judas who won't let her go to her own mother's funeral... she believes it right then, and it's hard for me not to take that personally.  The only thing that kept me from running home the other day after the Judas comment was that I knew she wouldn't remember it when she woke up, which was less than an hour later, which I was completely right about, but I must have suffered as much as Judas waiting for the cock to crow, knowing I was hurting someone I loved, even if I didn't mean to. 

Damn this is hard. 

*and what an irony that is to me, the chronic pain patient: if you're dying, we can ease your physical pain; if you're not, you're pretty much out of luck.  Good system, everybody!

**Irony part 2: she hates taking medicine, and will not take it at the first sign of pain. Or the second.  Or until a part of her anatomy is in danger of falling off. 

Wednesday, July 04, 2012

She always liked the Snoopy one

I've been trying for weeks to write coherently about where I am and what I'm doing.  And all I keep coming back to is this: I am living on my grandmother's couch, from which I can see my grandmother's hospital bed at all times.  I am making three breakfasts a day, when necessary, and sleeping in 10- 25 minute bursts (finally, a practical use for my painsomnia!) and talking about what happened 75 years ago as if it were happening right now.  And I am doing all of those things because my grandmother is dying.

Or she's not.  (It depends on the day, really.)

And it's happening both too quickly and too slowly; too tenderly and too angrily; too neatly and too messily.  And the rest of my life right now makes about as much sense as that previous sentence. 


About two months ago, I started to get more worried than usual about my grandmother, because during our weekly visits and phone calls, she was saying things that made very little sense, her voice would get whispery or slurred, she'd go off on tangents about subjects we'd not been discussing, and, eventually she stopped being up for visits, and was ending our phone calls rather abruptly  ~ sometimes in the middle of a sentence, she'd say "Well, give my love to everyone: talk to you next week", and hang up the phone.  Now she's never been particularly skilled at using the phone (especially the newfangled cordless 'doohickey' my uncle installed for her a few years back), so this was strange, but not completely out of character.  When I'd ask my uncle how she was, he'd say things that sort of glossed over my concerns - not addressing them so much as giving me a blanket "oh, it's been a bad day/week" and moving past it. 

But enough things were happening that I was majorly concerned, so when he started ignoring my calls 3 times out of 5, and she stopped being available for even the slightest phone call, I decided it was serendipitous that the upstairs bathroom needed re-tiling at the exact moment that I needed to get into the house, and asked my uncle for refuge from the smells, hoping it would get my foot in the door here.   I got that far in, and - aside from Tuesdays with the kids and a shower at home, and my own doctor's appointments - I haven't left since.

Because she wasn't just not feeling well: she was decidedly different.  Failing.  Stumbling over sharp edges and corners in conversations that should have gone smoothly.  Sleeping all hours of the day, and getting her days and nights confused.  Asking for dinner at 6:45 in the morning, demanding to know why we were starving her, even though she'd just eaten at midnight. 

Her confusion is a live wire of a thing: you never know which Grandmother is going to wake up.  The one who remembers who you are and how she used to lay you down to sleep on a quilt in the den while your mother went to school, or the one who thinks this place, the house she's lived in for 50 years and raised 9 children in, is a hotel or a hospital that you work in and that she'd like to check out of thank you very much.  She could take a nap at noon and wake up around three, ready to sweep the porch and sit out in her rocker.  Or she could stay awake till 4 in the morning, moaning because you've just told her that four of her sons are dead and she thinks it just happened right now. 

"Humor her as much as possible" the hospice people say: If she tells you she sees her dead sister bustling around in her socks and assigning chores, play along if you can.  If she thinks she's the charge nurse and is waiting for doctor's orders, let her wait till she gets tired and moves on.  That's all good in theory, but in practice, it's having her call you a traitor because you knew that her brothers weren't really dead and you've been letting them hide here all this time and now won't bring them out to her.  It's her giving you a dead-eyed stare for 30 minutes because she's sure that you've allowed her "little boys" to be sent away without her consent.  It's handing her her purse 4 times in an hour, and helping her count and recount the same $197 dollars in cash she's had in there since May.  It's eating steak and baked potatoes at 11:30 a m because she insists it's time for dinner.

Some of those things are doable, and others - because even in her confusion, she's no dope - are not.  If she tells you she say a dog in the kitchen last night, and you play along, she wants to know who is feeding the dog, and where it is staying right now, and who allowed a dog in her kitchen in the first place, and aren't you allergic to dogs?  And here is where my poor lying skills are put to the test, and where she sees through all my attempts to talk around the subject, and where, inevitably, one of us will wind up upset. 

At first, my uncle assumed that this was a complication of one of the medications she was given for her fall down the stairs - she is particularly sensitive to pain meds, and the oxycodone made her hallucinate enough that the doctor took her off it immediately - but now she's been off those meds for months, and she is not improving.  And we're remembering little things: like that fall down the stairs - what was she doing up, getting ready for church at 3:30 in the morning in the first place?  Like all the conversations we've had to repeat because she didn't remember what we were talking about at all.  Like how she seemed to forget that her son and nephew had both died last year, and we'd all assumed that it was just how she was grieving this time - that, having so much heaviness to bear, her brain had decided to remember it only when necessary, and to spare her most of the time.  How even last year, maybe two years ago, our visits were getting shorter, and she was going less places, and sleeping more, and participating less, and all of the little things that seemed like just "oh my goodness she's going to be 95 years old, if she wants to go slower, cut her a break!" and now seem like "how did we miss that?" 

I think he still assumes that the "confusion" will clear up, at least some - I'm the only one using the word dementia, and when I brought it up the first time, I might as well have punched myself in the face, for the look he gave me.  But we both know - this is not normal, this is not getting better, this is not going away. 

The hospice people were called in when her aftercare for the fall ran out: she still wasn't able to shower by herself or even get up the stairs very much, and her congestive heart failure was progressing to the point where she needed oxygen some of the time.  So the hospice people came in, and keep coming in to help us, but they aren't here to stop anything from happening - just to make it easier on her - and us, I suppose - as it happens. 

Her bed's been in the downstairs dining room since the fall (and by fall I mean both the tumble down the stairs and the season which it occurred), but now it's a hospital bed, and the room still has the look of a temporary, make-do space.  Her clothes - the housecoats she wears everyday - are stacked on chairs and on the buffet, she doesn't have even a drawer down here she can call her own.  I want to have things brought down, things she can recognize as part of her room, pictures or a bedside table, or something,  but she still thinks she'll make it back upstairs, and my uncle sides with her (and is the only one of the three of us who can climb the stairs), so I am outnumbered. 

I know I'm making some progress with him - he's started telling his brothers and sisters more of the truth when they call.  Grandmother is good at pretending - on the phone or when the doctor/nurse/hospice person is here - that she's holding it together pretty well.  And sometimes she is.  But those times are getting fewer, and the times when she is not are getting more severe, and to say anything else at this point is straight out lying.

I've been avoiding cousins calls for weeks now, knowing that I have to say the truth, and not wanting the words to have to come out of my mouth.  My brother knows now, my sisters: telling them was impossible - what do I say?  She is not doing well, except for when she is fine.  She needs the oxygen every day now, but sometimes it makes things so much better you wonder if it isn't fairy dust.  Other times the cannula might as well be blocked, for all the good it does as you sit and watch her chest heave, hoping she catches the next breath.  How do you explain that things are routine and desperate all at the same time?  How do you get them to see that it is urgent, but not critical today, and that that may change by the time we finish our conversation?

I put such a look of fear on my brother's face, and I know that I feel it as well - The end is coming, and I can't stop it but at the same time, it's just an ordinary Tuesday here, with Grandmother lamenting the state of her curtains ("they never got washed for Christmas, and here it's Easter all ready" "No Grandmother: it's the 4th of July"  "That's what I said: didn't I?" "Yes ma'am") and hoping that mail might be interesting.   Nothing out of the ordinary, really, except for everything. 

When I say that it's happening "too quickly and too slowly", I mean she would hate this, if she knew.  She does hate it, when she realizes.  Sometimes she has clarity, and those times are the worst, because she knows that she isn't clear the rest of the times - that her days are blanks and holes and that during those blanks and holes she may say things she doesn't mean. 

"I hope you know how much I love you," she'll say when she's clear, as if to make up for all the times she'll forget who I am tomorrow, all the misunderstandings we'll have before she's clear again.  She was never one to say that, not really: we all knew she loved us, but it wasn't her way to come out and say it.  So it means all the more that she does it now.  And I do know, I do. 

 But I don't know what to do, because most of the time I'm just sitting here.  Doing the laundry and talking about the time her uncle was killed on the ferry to Staten Island, marking time.  We make it through another day, and I write a big X on the calendar, because she's sure to ask me 17 times tomorrow what the date is, and if it's not marked off we'll have to argue about it, and above all, I'm trying to keep the peace.  When she gets upset, her breathing gets worse, and she gets more confused, and it certainly isn't worth that worry, to remember the date.

I can watch her heart beat in her neck - the vein there bulges some, and it makes the skin expand like a bullfrog's sometimes when she's breathing too hard.  Sometimes her whole chest caves in on a breath, and I hold mine while I wait for it to re inflate.  Enough beats, enough bulges, and we make it through to another X, and I wonder what I'm doing here, when she seems OK, really: tired, sure & confused, but maybe I'm making too much of it.  Maybe I'm worrying everybody and throwing off our whole summer plans and lives and she'll just keep ticking, just keep making it through the days.

 It's not a waste, me being here, because I'm spending time with her, which has always been one of my favorite things, but is now also a strain at times;  and I sit and listen to her worries - and oh boy does she have worries, she might be 89% worries at this point; and I make sure she doesn't tangle herself up in the sheets when she gets up to go to the bathroom 16 times during the night, but sometimes it feels like I've put everything on hold until the next horrible thing happens, and that's a terrible feeling.
Like I'm waiting for her to get worse, because I know she's not going to get better, and I wonder if she thinks that's why I'm here, because she can feel how worried I am sometimes, can read it on my face.

"Why are you so sad?" She'll ask me.  When she asks me with my name, I can smile, and say "not sad, just tired", and have it be the truth.  But sometimes she'll ask as if my being sad is part of some plot against her, or just another sign that she's dead and nobody told her, or yet another example of how we are all hiding things from her, and then I don't have the poker face to pull it off. And I hope I'm not making it worse, feeling sad, when she needs me to bring peace,  so I suck it back in, and hope it doesn't leak out so much.

I feel like a float in the Macy's parade, I've got so much sucked in.  Because today is Wednesday, July fourth and it's only 9:30 in the morning, and so far she's had a sandwich at 2:30, cookies and milk at 6:00, heard the doorbell ringing at 6:15. And we've talked about a non-existent trip to New York that nobody is making, the time in the 70s that she walked down to listen to the Pops with my two oldest cousins and they all danced in the street on the way home, and at least twice she's told me how to wash the windows when we take the curtains down today. 

You know, at the end of those parades, a long time ago, they used to just cut the strings and let the floats drift away.  I'm not sure I want to be around when the time comes to let all the sadness out, and floating away sounds heavenly right about now.  But I'm here.  And I'm sticking.  And it sucks, and I wish I could write about it in a way that made logical sense, but it doesn't make logical sense, so we're stuck with this, pouring a little bit of the sadness and worry and stress out onto this page, so I can face going back in there and talking about the goddamn curtains again while I try not to count her pulse or monitor her breathing.