5:30am

I would like to be able to tell a story that is sad but also filled with peace and comfort at the end of my grandma’s life. But I can’t. Not yet, anyway, and who knows when. Everyone else sees it that way. I was with her all night. I was the last one to talk to her, the last one to hear about her day, the last one to hear “I love you”. I comforted her as she asked me again and again if I was still there. I sat by her, touching her, so she’d know for sure I hadn’t left. She kept saying, “Thank you. Thank you for calling.” She always complained I didn’t answer my phone. She was so glad I was there that night. She kept waking up and saying, “Thank you.” She’d wake up and just say, “I love you.” She asked me about 15 times if it was 5:30am, because that’s when I was supposed to leave for work in the morning. I reassured her every time that I wouldn’t leave without telling her. She’d wake a few minutes later and anxiously ask, “Five thirty??” When the nurse came in, she said, “It’s 5:30, my granddaughter has to go.” And again I reassure d her that it was not 5:30, that we still had all night together.

I was there when she got pain medicine and stopped breathing for a long, long time. I heard her last words. I heard her say, “ok” when they said they were giving her her scheduled meds, although I think she was pretty much asleep. I felt she was already comfortable but also didn’t want her to wake up in pain. I felt crazy guilt when she never woke up again, like I should have stopped them from giving it to her. I, who am the most fervent believer of palliative care and giving pain meds at end of life, who wanted my grandma’s suffering to ease more than anything, panicked. I am still panicked. I wanted to take back that last push of opioids. I wanted one more word with her. One more day. I immediately held her and told her I loved her so much, I was there, I wasn’t leaving. She started breathing again but it was never the same. She was unconscious from then on.

I called my mom to tell her. Then I lay back down beside my grandma. I played her her favorite hymn on my phone and sang it to her. I told her I would love her always and miss her every day. I told her she’d be with her parents and brothers and husband, and Avalon my baby. I told her she’d made me strong, and I’d take care of my mother. I told her we’d be ok. I rubbed her head and said she should rest, I wouldn’t leave her.

My mom and uncle and aunt arrived. They all fell asleep after a while, but I couldn’t. My grandma’s breathing was ragged and soon became rattly. Then in a vocal way she’d gasp rhythmically. She lost control of her bowels and broke into a sweat that soaked her whole bed. The hospice nurses cleaned her for me, about an hour and a half before she died. I heard her breathing change and put my finger on her pulse. I felt it slowing down, I felt it become erratic. I held her in my arms for her last breath. Then I sobbed. My mom had woken for her last breath too and we were both there holding her. We told her she did good. “We love you. You can go. You did good, grandma. You did good.” Everyone else woke up. I just sobbed and sobbed and held her until the nurse came in.

I went to look at the time. It was 5:30am.

She fucking waited until 5:30am to be with me as long as possible. I had called in of course and was not going to work, but in her mind I had to go at 5:30 and so she waited until I said goodbye. She waited for me. She only wanted me, all the time, she wanted me to call her and visit her and come have lunch with her. When she went to the hospital she only wanted me to be sit there with her and talk to the doctors for her. She trusted me and I became her security, the way she’d always been mine. But so often the responsibility overwhelmed me or annoyed me. So often I needed others to go visit her while I stayed home. I hated talking on the phone and didn’t call back or answer. I would go see her on  my days off instead, but still. I should have answered every fucking time. The guilt is setting in and crashing down in waves. Thank god at the end I didn’t disappoint her. I was never enough for her but at least on that one night I was there when she needed me. At least in the end, I didn’t let her down. Thank god for that.

I wish I could say that it was all ok and as it should be. I did everything I would’ve told someone else to do. But I felt in my heart and soul that she didn’t want to go. Perhaps it is just me who didn’t want her to go, but I really felt she wasn’t there yet. Her body was tired and weak and ready, yes. But the night before she just kept insisting to me that she needed to go to bed, so she could watch videos with me and look at photo albums with me the next day. Maybe that’s totally normal. I just wasn’t prepared. I wasn’t prepared for her to be sitting up clearly talking and laughing and visiting and eating, and then die in the night.

It’s not at all like I thought it would be. I see images of her body dying and dead every second. I agonize over every word she said to me that night. I feel the thready pulse under my fingers. I feel her skin, hot at first then cool and clammy, her cheek as I pressed mine to hers, her hand in mine, her arm as I rubbed it. I feel sick inside, physically and in all other ways. It all feels very wrong and I so expected it to feel very sad but also ok.

I thought elderly, sick people who die with pain meds and family around at the end of a long period of suffering was ok. I thought it was the best death we could give them, which meant that inside I would feel peace, if not grief and loss of course. But I don’t feel peace. I feel anxious, desperate, and traumatized. I am suddenly obsessed with the thought that my mom is going to die soon, too. I feel like I need to lie next to her and obsessively listen to her breathe. I’m seeing images of her as well, gasping for air and not responding. I suddenly understand what paranoid, psychotic people must feel all the time. This is totally and completely not what I expected. I think I will seek professional help.

yesterday

I got to spend the day with my grandma yesterday. I dropped M off at day care, asking her to be strong and stay at school so I could help Gigi. Bless her heart, she really tried, and didn’t cry or cling to me, just watched me leave forlornly. I hate leaving her, but this is the one instance in which I’m willing to do it.

I sat by my grandma’s side, helped her wash up, and saw her transfer to hospice through. At one point she told me she loved me, and said that I always “got” her, and was always like her, even though her three kids weren’t. She said I was the one person who took her advice and saw things like she did, and she’s right. Over the years I’ve repeated that advice often: (Don’t wander around the store forever, ask someone where to find it! Choose your battles. Ask for directions on the road. Always plan your route ahead and have a back up map and supplies in your car. Be prepared. Family is everything, always be there for your family.)

The most tear-jerking part of the conversation was when she said to me, “You have to take care of your mother. And make sure she’s not left out. I don’t want her left out of anything because she’s been here for me every day.” My grandma has spent her whole life worrying about and looking out for her only daughter. She’s given her a safe place and been the rock my mom could always lean on. I promised her that from now on will give my mom a safe place. Of course it’s an easy promise to keep, because she’s my mom, so I will always make sure she’s ok. It’s just such an insight into what goes on in my grandma’s head: she’s just worried about us. She wants to take care of everyone, manage everything, make sure we’re alright.

I returned with M in the evening, and she was very confused and drifting in and out of consciousness. It’s the most confused I’ve seen her. I wished I could stay there and keep reassuring her, but with M it’s impossible. I have to work today and tomorrow, but I think I’ll stay the night with her in between. She is so comforted when I’m with her. I never imagined the day when I would be her rock. But I’m happy to be it right now.

saying the hard words

Last night and today have been spent getting my grandma out of the hospital to hospice. Clarifying her wishes now is difficult, as she can’t always remember what we’re talking about and the old “fight til the last” instinct she’s always had keeps popping up. In the end, with the palliative care team in on the discussion, she agreed that it would be best to just focus on keeping her comfortable now. I have no idea if she’ll die soon (this week?) or not soon (months?). Just as at work in critical care, no one can predict, and if you try to guess you’ll always be wrong. She will be in a hospice home though, where they can finally understand palliative care and stop telling her she’s taking too many pain meds.

It’s so strange having these conversations with someone I consider my parent. She’s my grandma but along with my mom, she raised me. She made sure I was safe, doing well in school, behaving, going to the dentist, getting good grades. She put dinner on the table for me, and made sure I knew how to find my way around town and cook a dish. She worried about me every day, and took pride in my accomplishments as if they were own. In a way, I had two mothers. I was my grandma’s first and only local grandchild. Getting me to adulthood successfully was the main goal of my grandparents before they died. And here I sit having “the talk” about goals of care the same way I do with my patients and their families every day. It’s surreal. It’s awful. And gosh, is it different when it’s your own loved one.

I’ve had these conversations on a weekly basis for six years as a professional. I’ve guided dozens of families through these difficult and painful situations. I’ve watched people die and watched their families sob. I’ve said, “this is so hard, I know.” But I didn’t always know. Nothing can be totally real until you’re the one wearing the hat.

In the midst of all of it, my daughter gets stuck with being left. Left at daycare, left with grandma, left with impatient and frustrated and stressed out adults. I feel pressure as never before to be the one holding it all together. My OCD starts to shine as I can’t bear my messy house and yet I found a puddle of piss in the corner of a room and nearly lost my shit. I have a migraine and I’m tired and I just… can’t.

But I have to.

 

when the end feels near…

…even 3-year-olds feel it.

Yesterday I told M we were going to visit Gigi, that she’s sick and in the hospital. She said, “Again??” Then a few minutes later she piped up from the backseat, “Grandpa died. He went to the hospital then he died.” Yes. She understands.

I’m still working because I have one call-in left before I get in big trouble. So I’m trying to save it for like, M being in the hospital or myself puking or something. But I’m trying to get someone to pick up some shifts so I can be there to help decide what to do. I know she’s not going to be here for long, but I’m worried that she isn’t getting enough for her pain and discomfort. I feel I have to be the one to make sure she isn’t suffering.

Lying in bed listening to the rain last night, I felt that I can never be enough for anything. I’m not “enough” for my daughter. I’m not “enough” for my grandma. They both need more of me. My job needs more of me. My mother needs more of me. My house and property need more of me. My cats need more of me. My self needs more of me. I can’t meet the needs of even a single one of the above.

gun violence has come here

We had a lovely vacation on the west coast of Michigan but when we came home, reality caught up fast. Not only was the house a mess, my grandmother was mistreated by a nursing home staff member, she was being admitted to the ER for possible stroke, and the hospital would not let us in because it was on lockdown following not one shooting in our small city, but two, in less than 24 hours. I just received an email from M’s school regarding the safety of the children and their policies and procedures for what to do if there is the threat of gun violence in the area around the school.

Of course, the Uber driver shooting happened,  Orlando happened, and the black men who were murdered by police still keeps happening, and Dallas happened. And I’m always like, what the fuck is going on in this country right now?? But we never think it’s going to be happening in a little, far out-of-the way place like the one we live in. We never think it will effect our schools, our hospitals, and our daily life. Last night four people were gunned down in the nearest city (where M goes to school) and today someone was shot while pumping gas in a different area of the same city. It’s unreal.

And yes, my grandmother was verbally accosted by an LPN at her assisted living home, which she just moved into last week. They have been withholding pain medication from her, so we filed a complaint yesterday and as I was about to go up there today to speak with them again and continue the process of addressing it, I received word that she was somnolent and being admitted to the ER, after her brother stopped by and noted that she was difficult to rouse. Thanks to the gun violence that is now somehow a part of life in ‘Merica, we could not even enter the ED at first. When they did allow us in it was a madhouse and security was everywhere.

And yes the house was a mess. I was expecting that, but what I wasn’t expecting was an old bowl of cat food containing maggots to be sitting on the counter. Yes, things get that bad while I’m away. Yes, I really do have to clean my heart out whenever I come back from anywhere, even work.

My stress level is THROUGH THE ROOF.

M is taking a nap on the chair right now. I was going to send her home with my mom and stay with my grandma for a bit. But M was breaking down, begging me to stay with her and refusing to leave me. My heart couldn’t take it, so I went home with her and left my grandma. She wasn’t very responsive anyway. I hate that I have to choose, but looking at my little girl napping next to me, so comforted by and in need of my presence at this moment, I know I made the right choice. I know it’s a choice my grandma would understand.

the good granchild

It is so miserable hanging out with my grandma. She complains, demands, and obsesses the whole time. I’d rather be getting a root canal I think. This makes me quite sad and uncomfortable as I was always her favorite and we always did everything together. Now even the thought of spending time with her turns me into an irritable grump for days.

Her descent into old age has been complete misery for her. But none of us are angels. We can’t fix anything for her nor do we enjoy being her whipping posts. Being around it completely deflates me, turns me into a road rager, and depletes the patience I need to be a good parent to a 3-year-old.

I have been here two hours and I’m ready to crawl into a sleeping module and not return for a month. The guilt makes it that much more tiring.

In other news…

In non-future life plan news, life at home is still stressful. In spite of my pronouncement that I’m done managing my grandma’s care, being that she’s in the hospital I’ve had to be involved. This isn’t as stressful as at home (hospitals are my bag, I’m like a fish in water there), but my grandma does things like call me freaking out and panicking and not making sense. So after working 12 hours in my hospital, I drive to her hospital and try to figure out what’s going on. Now the nursing staff thinks she’s a total PIA (she kind of is) but I got the supervisors and patient advocates and all that stuff involved and now, true squeaky wheel style, we’re getting VIP care.

She’s in horrible pain and psychological turmoil, and today told the docs not to do anymore tests and just control her pain and get her the eff out of the hospital. I finally got to meet with the doctor and, per her wishes, she got a better pain management plan and she’s leaving for rehab soon.

I told her if she didn’t do well at rehab I’d do everything I could to get her home on hospice. Maybe I will be able to, maybe not, but it comforted her a lot to hear it. Our caregivers and my mom stay with her most of the time, thankfully. I come every day I don’t work while M is in preschool, and back again with M for a short time. M is always worried about her Gigi and likes coming and doing nice things for her.

My dad is also in town so we’ll be having some family time there, too. And finally the sun is shining and it’s somewhat warm out, so we need to get our seedlings planted if we’re going to have a garden.

I’m so tired, emotionally and physically and mentally. The only thing that keeps me going is M, of course, and the thought that we’ll one day really be living again, somewhere other than here.

leaving my life

Had a breakdown today. My grandma went to the ED, I stopped by and completely lost it. The case worker there was totally a bitch and not even nice about the fact that she had no options for me. That’s fine, though, not everyone is good at their job and she’s one of them. One of the excellent caregivers we have hugged me and told me I just need to set this down and walk away, for my own sanity. Her pep talk was so nice and it felt good to just be heard. My uncle was trying to offer to pay me to do this and is he fucking kidding me?! Not only is it not about money, but I’d pay not to have the job!

I’m also real fucking broke. As in, not living within my means broke. Mostly because a third of my check is going to childcare at the moment. Holy shit. Yes it’s better for M, and for my mom. But not sustainable when it comes to the bottom line. I have one option, I think, and that’s to leave my job and work at an office somewhere so I can have regular childcare. FML.

Also I’m wanting to just leave. Leave the lake. Move away. No one is taking me seriously about the fact that I can’t do it all anymore so maybe that will drive home the point? No dudes, I’m seriously out of town. Like, permanently. I need to find a job and childcare that matches hours. I need to find a rhythm and a sense of order. I need to get out of this mess and start over. I need to be a mom first and foremost.

Last and perhaps least (at least it really feels that way), there’s me. I do 12 hour shifts taking care of my patients and their families. I am really good at it. I am not a bitch to them. I advocate for them. I give it my all. I bitch about it behind closed doors but out there as their nurse I really do a good job. I go the extra mile for them. I come home 14 hours later and I’m a mom. I also have a mom, who I worry about and who I’ll someday have to go through this with. I’d like to know, who in the fucking hell gives a shit about my mental or physical health? Who really cares if I’m stressed and pushed too hard? One person really, truly cares. My daughter. She depends on my well-being for her own. She needs me to look out for me because there’s no one else to do it. She needs me to be the best mom I can be and I can’t be that in this situation. She needs me to come to the table every day with a full tank, and I’m showing up on empty most of the time.

It’s unacceptable. I’m 31 and I don’t really know the last time I anyone really looked at me and said, “you’re doing a lot for everyone, but is that really good for you?”

Some commenters asked about my mom. She is actually doing more than anyone. She’s willing to fire and hire people in order for my grandma to stay at home. She’s the one watching M for me when I need her to. She’s filling in when caregivers call in or arrive late or whatever. My grandma does not want her to do anything for her. Don’t know what the beef is about, but somewhere along the way my grandma decided she didn’t want my mom to do anything. She’s mean to and dismissive of her. So yeah, my mom is doing what she can, and it’s a hell of a lot more than what her siblings are doing, and a lot more than what I’m willing to do anymore. So credit where credit’s due. The rest of us are ready to ship her to assisted living, and my mom’s willing to keep going with the home staff. If she doesn’t want my mom’s help it looks like she’s SOL.

 

I used to be a nice person

…before I became an ICU nurse. It literally changes a person. I used to be accommodating and shrug off bullshit and try hard to make everybody happy. I originally thought ICU nurses in general were cold-hearted bitches who were smart but didn’t care who they pissed off (and I thought that was a bad thing). Now I know that we’re not cold-hearted bitches but also we don’t care who we piss off (and that’s how you have to be to get shit done). And honestly, you just get tired. Tired of idiots who don’t know what they’re doing. Tired of intubating 90-year-olds. Tired of trying to convince people that their loved one is suffering too much while they writhe in agony every time you turn them. You just get tired and you start to snap a little bit.

It flows over into daily life, too. I’m just not a pushover. I try to be nice, and work things out. And now? I guess I’m not nice anymore. I guess I’m done. I want to enjoy life. Enjoy my daughter while she’s little. Not feel like every time I look at my phone or come home it’s like going to another chore. I’d like to have some time to just be in the middle of my life, before my own parents get old and need me to make decisions for them. Is that so much to ask?

Yesterday I got home and looked for frogs with M. My grandma was blowing up my phone with her crisis-du-jour and I went up there. I sat there and listened to her complain about everything and get a lot of what I did and said in the past totally wrong. Then I said, “ok. Well I hope it works out for you.” I’ve failed miserably at problem solving this whole mess so I’m just not doing it now. I have to go home, make dinner, be with my kid. We’ve got a garden to plant, I need to exercise, it’s a beautiful day. I’ve been caught up in this hell way too long.

I walked out after about 30 minutes. M and I made dinner together and ate together. We went on a nice walk and played at the park. We took a bath and read a book about frogs twice. Then I banged out one last email to my grandma’s kids, my official letter of resignation, so-to-speak.

I’m ready to move to the co-op now. I’m ready to take a job where I get out at 4pm every day and see my child. I’m ready to be closer to my sister, and come to the lake on weekends. I’m ready to just be responsible for us, M and I, for a hot minute.

P.S. The “interview” yesterday was good, but I quickly figured out it’s not a good fit for me. I won’t be a pill pusher or a cog in a wheel. I’m able to direct the care of some of the sickest people in the world, I’m not just going to wheel a cart of stool softeners around all day. I did meet up with my old boss from my college days, when I worked in assisted living. It was so awesome to see her, like long-lost family! I want the job she had back then… resident services, overseeing their care but not doing actual bedside care. In other words, I want an office with my name on the door and business hours. The cool thing is that I made two awesome networking connections yesterday, so bring it, I say. If not I’m going to look into clinic jobs. Just give me a phone and let me decide who needs to see the doc and who doesn’t. Easy peasy.

I just want to see my kid more. I spend all my time wondering and worrying about how I can be with her and there for her more. Other than winning the lottery, of course. I’m done with running my ass off all day, telling doctors how to be human beings, and leading them like sheep to the correct decisions. Done with constant poop and phlegm and patients spitting at me and families deciding to keep their 98-year-old great-granny on life support just because. Done I say! Universe, this is your call… let’s get this train on another track!

 

no seriously, I’m done

I just sent out another round of emails to my grandma’s kids (and one niece). I’m trying to tell them: I can’t do this anymore. It’s out of control and I’m out! I’m not sure that they really get that? Or maybe they do and they just live too far away that they can’t or won’t do anything right now. Everyone is coming on Memorial Day. Until then… I dunno. This caregiver who is causing so much drama is insisting on meeting me and telling everyone I’m avoiding her. I’ve been in touch with her regarding my schedule, and she is welcome to meet with me when I’m home but she doesn’t want to do that because those are after her work hours. I told her she can call me and talk, or wait until Monday when I’m home while she’s there. Or Saturday, when I’m home all day. She doesn’t want to. She threatened to call my uncle and talk to him… which isn’t a threat at all ’cause I’m like oh yes please do that! I would love for him to take over so no problem there.

I had to tell her today, again, to go ahead and call him or we can talk on the phone. She just said, “ok” and that’s it. She wanted my mom to take M to school in the morning so I could meet with her. Except I can’t pick M up because I have an appointment, and I’d prefer to spend some time with my daughter and not pawn her off on my mom. I also need to take her to school to see if her teachers have any feedback, sign her up for the summer program, and pick up any announcements or newsletters. Sorry, but my kid comes first. And you know what? I think I’d like to come at least second to myself!

I go up there every day to see how grandma is and sit next to her. She complains nonstop and bitterly. She isn’t happy with me or anything else. It’s a miserable state of affairs let me tell you. No one is happy. I’m about to lose my mind being up there. Even a few minutes of it is just miserable. My poor mom keeps filling in for people at all hours, now she can barely look after M. It’s insane.

I never, ever want M to take care of me in my old age. Put me in a home, visit me once a week or whatever. Go out and live life and never get bogged down by this shit!