- Maleficent was magnificent: I probably like the idea of the story better than the original Sleeping Beauty. Angelina Jolie's cheekbones are RIDICULOUS in that film.
- I just want to nap. For like,
ever, hours. I miss me a good nap, especially now. - Somehow days are super long and time is super short right now. I despise this phenomena.
- I can't remember the last non-cancer related conversation I had with my sister-in-law, and that's making me physically ill, because it was probably our last actual conversation. (That doesn't involve me coaxing her into taking her meds or trying to swallow her food.)
- I'm ashamed to admit that I watch her breathe, but it's almost more painful to realize how many people I have had to do that for.
- I didn't get to go home for a shower at all this week - things got hectic (but the slow, interminable kind of hectic that can only happen mid health-crises) and schedules didn't line up. But I'm getting one this week. Almost definitely.
Showing posts with label hospice. Show all posts
Showing posts with label hospice. Show all posts
Saturday, November 08, 2014
Bullet points for the brainless
Thursday, November 06, 2014
Why doesn't liquor work in real life the way it does on tv?
Today they talked to us about hospice. My sister-in-law is still a month shy of her 45th birthday. She and my brother just bought a house, and never had a honeymoon. And tonight, I need to have a conversation with her children about how they live the rest of their lives without her. Not today, but soon.
There are very few times in my life when I've thought "God I really wish I could drink," given what I know about drinking and how I've never seen it actually help any actual person as opposed to hurt them worse, but ... boy: if it worked like it did in the movies, just numbing things for a little while? Today would be one of those days.
There are very few times in my life when I've thought "God I really wish I could drink," given what I know about drinking and how I've never seen it actually help any actual person as opposed to hurt them worse, but ... boy: if it worked like it did in the movies, just numbing things for a little while? Today would be one of those days.
Sunday, November 02, 2014
Here's how it happens
I go to visit my grandmother after she gets out of rehab, following a nasty tumble down the stairs. I've talked to her, as usual, on our Friday night phone calls, but ... something seems off. She drifts, seems to forget she's talking to me, seems ready to hang up as soon as she answers the phone. I'm worried, but my uncle has assured me that it's just a medicine mix-up, and that it's all under control.
Shortly into our visit, I realize that nothing is under control. My uncle is somehow missing the fact that my grandmother is not acting lucidly, that she's easily confused, that her pain is not being managed well. As we talk, he seems to realize that things are worse than he recognized, and I can see that neither of them are sure what the hell comes next.
I have no idea what comes next, except now I am volunteering to stay on the couch, and help with meds and her PT almost before I knew I was thinking it. I was meant to stay for a few days, but - on the first free day that I went home, to shower and refill my pills and gather some supplies and whatnot - I don't make it as far as my house before I am filled with an overwhelming fear, only manage to make it to my room and close the door behind me before I am sobbing uncontrollably. The only thing I am sure of is that I need to be there, because they need me, even though I will be able to solve nothing, even though there is no possibility of fixing this.
And that was the last night I spent anywhere but my Grandmother's couch until three weeks after she passed away.
----
This time, my mother and I have planned to come down to my brother and sister-in-law's house every Thursday, and at least one other day during the week, to clean the house and distract & feed the children, and just... be supportive. The cancer is stage 4: we are hoping for miracles, but know how unlikely they are. We do not care. She does not care, and so treatment continues.
We are there two consecutive Thursdays, straightening things up and moving all their shit into neater piles, and helping the (not so) littles with their homework - basically doing the busywork of life that falls to the side when you're too sick to do anything but sleep and take your meds.
My brother slowly seems to understand that we are here to help and not to just mess with his shit, and starts confiding how scared he is, how desperately hard this is becoming, how he doesn't know if he's going to be able to do it. On Facebook, he cracks a 'joke' about Stage 4 Cancer and spousal weight loss, and I can see how tightly he is holding on to his edges, how close he is to his private apocalypse, and I ask how I can help.
He tells me he trusts me more than anyone else, and he needs someone he can trust. He needs someone. I know how to be someone, and I push aside the thoughts of how often I need a someone and can find no one, push aside all of the non-essential elements of my own brand of being sick, and transition into helper-mode. I make schedules and organize paperwork and calendars. I make sure someone else will always be here, even if that someone else usually winds up being me.
Not being able to drive, and Mom having a job now, and scarce/uneven coverage during the day, mean that it's much easier to just camp out in their comfy chair, to claim a corner of the living room as my own. Sleepover almost never-ending, for now. For today.
And here there is hope, and here there are treatments, and here there is still that irreversible diagnosis waiting for us at some end, but it isn't now.
For now, I try to coax my sister-in-law to eat more than three bites of noodles, of pizza, of absolutely anything, and lament that radiation makes everything taste like chalk. For now I keep med schedules and daily logs and ask otherwise inappropriate questions about bathroom habits, and hope that, somehow, she will forgive me. For doing her kids' homework with them and making decisions about whether they can go over their friend's houses; for camping out on her couch when she probably just wants to be alone; for following her into another room when she can't really tell that her feet are tangled in the oxygen cord.
For all the little things that piss me off the most when I'm sick, and I try so hard to avoid, but somehow, occasionally, still slip out. For poaching and nagging and making a sad face when I think she's not looking.
That's how it happens - how, piece by piece, I become a fixture in someone else's story, someone else's home, someone else's days. How I turn off my own life - just for this little while - in the hopes of helping. Just Helping. Sweet jesus, just Let Me Help.
In case you were wondering. -
And a lot of people seem to be, and aren't exactly nice when they inquire - "How can you take care of someone else, when you can barely take care of yourself?" they ask. You're right - taking care of me is a struggle. Every. Single. Day. But a lot of that struggle is sitting around, laying around, distracting myself from the pain. Turns out; it's not that much harder to do in somebody else's living room, watching over them while they rest. Waking them up every few hours to try and get them to eat. Reminding them to take their pills when your alarm goes off for you to take your own.
Not saying it isn't hard. Because it's draining as hell and I couldn't be sorer outside of a 5-alarm-flare, but ... it's worth it. To be able to make her smile when I poke fun at my brother. To make my brother be able to go to work without having a panic attack. To hug some kiddos and let them pretend during a game of War. To talk to her sister and let her know that she matters to us too, that Sister-in-law is a part of our family, and that means that her sister can cry on my shoulder any day. To learn more about her, filing away bits and pieces for tomorrows.
If it's something that winds up being too physically taxing - and it already is, it always is - then that's a thing I'll deal with. Because there are a lot of parts of my life I have had to shut down, turn away from, pretend don't matter, and this is one area I'm just not willing to do that with.
But in case you were wondering, that's how it happens.
Shortly into our visit, I realize that nothing is under control. My uncle is somehow missing the fact that my grandmother is not acting lucidly, that she's easily confused, that her pain is not being managed well. As we talk, he seems to realize that things are worse than he recognized, and I can see that neither of them are sure what the hell comes next.
I have no idea what comes next, except now I am volunteering to stay on the couch, and help with meds and her PT almost before I knew I was thinking it. I was meant to stay for a few days, but - on the first free day that I went home, to shower and refill my pills and gather some supplies and whatnot - I don't make it as far as my house before I am filled with an overwhelming fear, only manage to make it to my room and close the door behind me before I am sobbing uncontrollably. The only thing I am sure of is that I need to be there, because they need me, even though I will be able to solve nothing, even though there is no possibility of fixing this.
And that was the last night I spent anywhere but my Grandmother's couch until three weeks after she passed away.
----
This time, my mother and I have planned to come down to my brother and sister-in-law's house every Thursday, and at least one other day during the week, to clean the house and distract & feed the children, and just... be supportive. The cancer is stage 4: we are hoping for miracles, but know how unlikely they are. We do not care. She does not care, and so treatment continues.
We are there two consecutive Thursdays, straightening things up and moving all their shit into neater piles, and helping the (not so) littles with their homework - basically doing the busywork of life that falls to the side when you're too sick to do anything but sleep and take your meds.
My brother slowly seems to understand that we are here to help and not to just mess with his shit, and starts confiding how scared he is, how desperately hard this is becoming, how he doesn't know if he's going to be able to do it. On Facebook, he cracks a 'joke' about Stage 4 Cancer and spousal weight loss, and I can see how tightly he is holding on to his edges, how close he is to his private apocalypse, and I ask how I can help.
He tells me he trusts me more than anyone else, and he needs someone he can trust. He needs someone. I know how to be someone, and I push aside the thoughts of how often I need a someone and can find no one, push aside all of the non-essential elements of my own brand of being sick, and transition into helper-mode. I make schedules and organize paperwork and calendars. I make sure someone else will always be here, even if that someone else usually winds up being me.
Not being able to drive, and Mom having a job now, and scarce/uneven coverage during the day, mean that it's much easier to just camp out in their comfy chair, to claim a corner of the living room as my own. Sleepover almost never-ending, for now. For today.
And here there is hope, and here there are treatments, and here there is still that irreversible diagnosis waiting for us at some end, but it isn't now.
For now, I try to coax my sister-in-law to eat more than three bites of noodles, of pizza, of absolutely anything, and lament that radiation makes everything taste like chalk. For now I keep med schedules and daily logs and ask otherwise inappropriate questions about bathroom habits, and hope that, somehow, she will forgive me. For doing her kids' homework with them and making decisions about whether they can go over their friend's houses; for camping out on her couch when she probably just wants to be alone; for following her into another room when she can't really tell that her feet are tangled in the oxygen cord.
For all the little things that piss me off the most when I'm sick, and I try so hard to avoid, but somehow, occasionally, still slip out. For poaching and nagging and making a sad face when I think she's not looking.
That's how it happens - how, piece by piece, I become a fixture in someone else's story, someone else's home, someone else's days. How I turn off my own life - just for this little while - in the hopes of helping. Just Helping. Sweet jesus, just Let Me Help.
In case you were wondering. -
And a lot of people seem to be, and aren't exactly nice when they inquire - "How can you take care of someone else, when you can barely take care of yourself?" they ask. You're right - taking care of me is a struggle. Every. Single. Day. But a lot of that struggle is sitting around, laying around, distracting myself from the pain. Turns out; it's not that much harder to do in somebody else's living room, watching over them while they rest. Waking them up every few hours to try and get them to eat. Reminding them to take their pills when your alarm goes off for you to take your own.
Not saying it isn't hard. Because it's draining as hell and I couldn't be sorer outside of a 5-alarm-flare, but ... it's worth it. To be able to make her smile when I poke fun at my brother. To make my brother be able to go to work without having a panic attack. To hug some kiddos and let them pretend during a game of War. To talk to her sister and let her know that she matters to us too, that Sister-in-law is a part of our family, and that means that her sister can cry on my shoulder any day. To learn more about her, filing away bits and pieces for tomorrows.
If it's something that winds up being too physically taxing - and it already is, it always is - then that's a thing I'll deal with. Because there are a lot of parts of my life I have had to shut down, turn away from, pretend don't matter, and this is one area I'm just not willing to do that with.
But in case you were wondering, that's how it happens.
Monday, September 10, 2012
A tree that looks at God all day, And lifts her leafy arms to pray*
I started this post a week and half ago. Here's what I wrote last Sunday, immediately after a moment of Grace ~
Tiny miracles: I'll take them.
Especially now ~
My grandmother, a great lady, wonderful mother, open-hearted, strong-willed, surprisingly versatile woman, passed away on Saturday afternoon. She had been having some trouble breathing earlier that afternoon, so I adjusted her oxygen, gave her her medicine, offered her a weak smile: "Don't give me that fake smile", she whispered in her all of the sudden raspy voice, "You look exhausted." "So do you," I said "Get some rest." And then she went to sleep and I laid down on the couch maybe 5 yards away.
A half an hour later, my uncle went in the room and called out to me: "She's not breathing; I think she's gone." Her hands were cold, but the rest of her was still warm, that's how recently she had passed. Within a half an hour from the time I had been holding her hand, getting scolded, giving her a kiss. She went quietly - I never heard even the tiniest gasp - a peaceful end after all these months of drama and unrest.
Thank you all for all your support these past months: I can't express just how much it means to me. For listening to all the ranting about dementia and how much I hate it; about the pressure and the heartache and the loneliness. I know it's been a dark blog as of late, because I had very little else to talk about, and I appreciate all of you who said even the smallest words of encouragement - I needed them more than I could say.
I don't really know what happens now: I'm feeling such a mixture of relief and sadness and numbness that I can barely get the simplest of tasks accomplished... I know that'll wear off as the days go on. Her memorial is Thursday & the funeral on Friday, and I'm trying to get everything organized for all of that: it's good to have things to focus on... a project to complete. I'm going to do that for now, and think about how lucky I have been to have her in my life, for as long as I did, even through these last hellish months. To have held her hand right before she left this world, well, that's not something I'll ever forget.
*Trees Joyce Kilmer: a line from Grandmother's favorite poem.
In the middle of transitioning her from her wheelchair to her bed after this morning's bathroom break, she suddenly stopped what we were doing, looked at me and said "Goodbye dear." I wanted to hurry her along, get her safely in bed, so I started to joke, would normally joke "where are we going?" because lately she'll say just about anything at anytime, but something about her tone was different, so I looked up from what I was doing. I looked right at her, and she was there. She was in there, somehow, in the midst of enough drugs to be hot air balloon-high, she was lucid enough to offer me this. "Have a good life", she told me, reaching for a kiss. "And no matter what, no slander from you, no slander from me. We'll just be happy for the life that we had these three months." I swallowed back my tears and said "Yes ma'am. Never: I love you." "And sometimes say a prayer for me." "Always," I said. It was all I could say, even if I could have managed more (and there was so much more I wanted to say: I have nothing but good things to say about you, forever. I'm not going to let these last few months smear your memory, and I know in your heart you know how much I love you. I'll miss you. Don't go.) she had closed her eyes again, and you could see the cloud was back.
Now this is not miraculous, you might say, but you would be wrong: for days, in the rare moments that she hasn't been completely knocked out, we've been talking about eating butterflies and dinner parties that happened in 1969; she's been (her version of) cursing out my Uncle and I for holding her prisoner here, when she just has to "go or I'll scream"; she's been in near coma-levels of sleep for the most part, waking only when her anxiety or pain levels break through what the meds can control. She hasn't really been lucid in over a week, hasn't been aware like she was for those three minutes, in weeks to months, really. So those three minutes? More miraculous than any other I've been lucky enough to live through.
Tiny miracles: I'll take them.
Especially now ~
My grandmother, a great lady, wonderful mother, open-hearted, strong-willed, surprisingly versatile woman, passed away on Saturday afternoon. She had been having some trouble breathing earlier that afternoon, so I adjusted her oxygen, gave her her medicine, offered her a weak smile: "Don't give me that fake smile", she whispered in her all of the sudden raspy voice, "You look exhausted." "So do you," I said "Get some rest." And then she went to sleep and I laid down on the couch maybe 5 yards away.
A half an hour later, my uncle went in the room and called out to me: "She's not breathing; I think she's gone." Her hands were cold, but the rest of her was still warm, that's how recently she had passed. Within a half an hour from the time I had been holding her hand, getting scolded, giving her a kiss. She went quietly - I never heard even the tiniest gasp - a peaceful end after all these months of drama and unrest.
Thank you all for all your support these past months: I can't express just how much it means to me. For listening to all the ranting about dementia and how much I hate it; about the pressure and the heartache and the loneliness. I know it's been a dark blog as of late, because I had very little else to talk about, and I appreciate all of you who said even the smallest words of encouragement - I needed them more than I could say.
I don't really know what happens now: I'm feeling such a mixture of relief and sadness and numbness that I can barely get the simplest of tasks accomplished... I know that'll wear off as the days go on. Her memorial is Thursday & the funeral on Friday, and I'm trying to get everything organized for all of that: it's good to have things to focus on... a project to complete. I'm going to do that for now, and think about how lucky I have been to have her in my life, for as long as I did, even through these last hellish months. To have held her hand right before she left this world, well, that's not something I'll ever forget.
*Trees Joyce Kilmer: a line from Grandmother's favorite poem.
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.
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.
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