Today my mom was only awake for about 4 hours. Yesterday it was 6. Tomorrow who knows.
I'll just keep telling her that I love her, as often as I can. And, in her more lucid moments we'll just keep joking like we always have.
Tuesday, April 9, 2013
Sunday, April 7, 2013
Asleep
Today my mom didn’t wake up until 12:30pm. Considering she went to be at 9:30pm last night, that’s a lot of sleep – a good 15 hours.
It’s not surprising, though. That’s what it’s supposed to be like, at the end. She’s just supposed to sleep more and more until she sleeps all day long, and eventually passes.
Today is also the first day since she got home from the hospital that she’s spent the day in bed – this is the first time in one year, six months, two weeks and four days that she hasn’t gotten up to sit in her comfy chair in the living room. This is the first time she’s been too tired to get up.
And it’s still not surprising. On Wednesday (her birthday) a hospice nurse put a catheter in because she couldn’t control her bladder. On Thursday she couldn’t remember why she wore glasses, and tried to convince my dad to pull out her catheter because she couldn’t remember what it was for. On Friday she woke up at 11:30am and looked bad all day – in pain and exhausted, but too stubborn to go to bed early. On Saturday we gave her morphine every hour and a half, and she dozed off a lot while we watched TV. She also forgot how to brush her teeth and had a hard time using her fork at dinner.
So it makes sense that today she can’t get out of bed. It makes sense that she can barely speak now, that she’s in more pain, and that she doesn’t want to eat. Sometime in the next few days she probably won’t wake up at all.
And so we’ll move our base of operations to the bedroom – we’ll watch TV, eat meals and hang out with her as she lies in bed. We’ll be here with her until she slips away.
It’s not surprising, though. That’s what it’s supposed to be like, at the end. She’s just supposed to sleep more and more until she sleeps all day long, and eventually passes.
Today is also the first day since she got home from the hospital that she’s spent the day in bed – this is the first time in one year, six months, two weeks and four days that she hasn’t gotten up to sit in her comfy chair in the living room. This is the first time she’s been too tired to get up.
And it’s still not surprising. On Wednesday (her birthday) a hospice nurse put a catheter in because she couldn’t control her bladder. On Thursday she couldn’t remember why she wore glasses, and tried to convince my dad to pull out her catheter because she couldn’t remember what it was for. On Friday she woke up at 11:30am and looked bad all day – in pain and exhausted, but too stubborn to go to bed early. On Saturday we gave her morphine every hour and a half, and she dozed off a lot while we watched TV. She also forgot how to brush her teeth and had a hard time using her fork at dinner.
So it makes sense that today she can’t get out of bed. It makes sense that she can barely speak now, that she’s in more pain, and that she doesn’t want to eat. Sometime in the next few days she probably won’t wake up at all.
And so we’ll move our base of operations to the bedroom – we’ll watch TV, eat meals and hang out with her as she lies in bed. We’ll be here with her until she slips away.
Wednesday, April 3, 2013
Monday, April 1, 2013
Perpetual motion, and a Q & A
Right now, this near the end, it’s too dangerous to enter into the pain, the grief, the darkness. When I sit still and leave myself open to feel it hurts too much – it overwhelms me, it cripples me and it makes me want to roll up in a ball on my bed and never move.
But right now I can’t afford to go catatonic. Right now I’m in the last days, weeks, months (?) of my mom’s life, and I want to spend as much time as I can with her. Which I can’t do if I’m rolled up in a ball on my bed.
So I keep moving. I keep doing. I keep working, watching TV, cleaning, driving. I don’t stop, I don’t pause, and for now that’s okay. Someday soon things will stop, or at least slow down, and then you’ll find me rolled up in a ball on my bed, and it will almost be a relief.
In the meantime I’m still moving, and people are still wondering how my mom is, and how I’m doing. So here I go, answering the most common questions I get, in case, when you see me, I’m moving too fast to be able to pause and answer from my heart.
“How’s your mom?” She’s dying. Her body is slowly shutting down. She’s in some pain, so she takes morphine every few hours. The morphine helps her to keep talking in 2 – 4 word sentences and sitting up in her chair instead of being in bed all day. She’s still eating and using the bathroom like she always was. Her right side has no strength anymore – it’s basically dead weight. It’s getting harder to lift her and some days I have to call my dad to help me get her from her chair to the wheelchair. But she’s still putting up a fight, and she’s not willing to give in yet. She always stays up until 9pm, even if she’s exhausted, because that’s when she goes to bed.
“How are you doing?” I’m hanging in there. See above to the discussion of perpetual motion. My dad and sister are hanging in there too.
“What are you doing to take care of yourself?” I’m eating, sleeping, exercising, and spending as much time with my mom as possible. Oh, and I’ve stopped feeling guilty for watching so much television. It keeps me going, so it’s totally worth it. Especially Buffy the Vampire Slayer.
“How’s your prayer life?” It’s great (and I'm not saying that sarcastically). It’s integrated. Jesus is with me, and he’s not going anywhere, and I talk to him a lot. It might not look like head bowed, palms together, eyes closed, dear God in heaven kind of prayer, but it works for me.
“Is there anything I can do?” I don’t even know what I can do, so I don’t have a good answer to that question. Lift us up to Jesus or send us good thoughts, suggest good television shows, and just keep being our friends, I guess. Not very tangible, but I guess that’s how it goes.
But right now I can’t afford to go catatonic. Right now I’m in the last days, weeks, months (?) of my mom’s life, and I want to spend as much time as I can with her. Which I can’t do if I’m rolled up in a ball on my bed.
So I keep moving. I keep doing. I keep working, watching TV, cleaning, driving. I don’t stop, I don’t pause, and for now that’s okay. Someday soon things will stop, or at least slow down, and then you’ll find me rolled up in a ball on my bed, and it will almost be a relief.
In the meantime I’m still moving, and people are still wondering how my mom is, and how I’m doing. So here I go, answering the most common questions I get, in case, when you see me, I’m moving too fast to be able to pause and answer from my heart.
“How’s your mom?” She’s dying. Her body is slowly shutting down. She’s in some pain, so she takes morphine every few hours. The morphine helps her to keep talking in 2 – 4 word sentences and sitting up in her chair instead of being in bed all day. She’s still eating and using the bathroom like she always was. Her right side has no strength anymore – it’s basically dead weight. It’s getting harder to lift her and some days I have to call my dad to help me get her from her chair to the wheelchair. But she’s still putting up a fight, and she’s not willing to give in yet. She always stays up until 9pm, even if she’s exhausted, because that’s when she goes to bed.
“How are you doing?” I’m hanging in there. See above to the discussion of perpetual motion. My dad and sister are hanging in there too.
“What are you doing to take care of yourself?” I’m eating, sleeping, exercising, and spending as much time with my mom as possible. Oh, and I’ve stopped feeling guilty for watching so much television. It keeps me going, so it’s totally worth it. Especially Buffy the Vampire Slayer.
“How’s your prayer life?” It’s great (and I'm not saying that sarcastically). It’s integrated. Jesus is with me, and he’s not going anywhere, and I talk to him a lot. It might not look like head bowed, palms together, eyes closed, dear God in heaven kind of prayer, but it works for me.
“Is there anything I can do?” I don’t even know what I can do, so I don’t have a good answer to that question. Lift us up to Jesus or send us good thoughts, suggest good television shows, and just keep being our friends, I guess. Not very tangible, but I guess that’s how it goes.
Vulnerability
Two TED talks that have given me the courage to share vulnerably, through this blog and with friends in general:
Brené Brown, "The Power of Vulnerability"
Brené Brown, "Listening to Shame"
Sunday, March 31, 2013
Easter
Today is Easter. A day of joy, of celebration, of singing trumpet-filled songs about victory over death and the like.
But I don’t feel too much like celebrating. My mom is still dying and I’m too exhausted to be all joyful.
So today during church (first time at church in two months. Score!) I was trying to figure out why Easter, why the resurrection of Jesus is still good news, is still relevant, even as I rebel against the celebration and the joy (but not the candy) that the day provides. How can Easter be meaningful, even to me?
I realized that the resurrection, the fact that Jesus lives, permeates my entire understanding of death. The promise of new life, of a new heaven and a new earth without tears, death, suffering, crying or pain (Revelation 21:1 – 5) is what keeps me sane. The belief that my mother is going somewhere better, somewhere where she’ll be whole and free again is what allows me to say goodbye, to tell her that she can let go whenever she wants to.
Now I don’t know for sure where my mom is going after death. I have no knowledge of who goes to heaven or hell, or what they look like, or if they even exist. But I hope that when she dies she gets to hang out with her mom, her sister, and my dad’s parents. I hope that she’ll watch over me, and look down on me here on earth. And I hope that someday I’ll get to see her again, wherever she is.
So that’s what Easter means for me. That’s what Jesus living again means for me. It means life after death. It means peace instead of pain. And even if I’m wrong it brings me comfort, so I’m going to keep believing.
But I don’t feel too much like celebrating. My mom is still dying and I’m too exhausted to be all joyful.
So today during church (first time at church in two months. Score!) I was trying to figure out why Easter, why the resurrection of Jesus is still good news, is still relevant, even as I rebel against the celebration and the joy (but not the candy) that the day provides. How can Easter be meaningful, even to me?
I realized that the resurrection, the fact that Jesus lives, permeates my entire understanding of death. The promise of new life, of a new heaven and a new earth without tears, death, suffering, crying or pain (Revelation 21:1 – 5) is what keeps me sane. The belief that my mother is going somewhere better, somewhere where she’ll be whole and free again is what allows me to say goodbye, to tell her that she can let go whenever she wants to.
Now I don’t know for sure where my mom is going after death. I have no knowledge of who goes to heaven or hell, or what they look like, or if they even exist. But I hope that when she dies she gets to hang out with her mom, her sister, and my dad’s parents. I hope that she’ll watch over me, and look down on me here on earth. And I hope that someday I’ll get to see her again, wherever she is.
So that’s what Easter means for me. That’s what Jesus living again means for me. It means life after death. It means peace instead of pain. And even if I’m wrong it brings me comfort, so I’m going to keep believing.
I'm also going to keep Peep jousting. Mom's pink peep killed Dad's yellow peep first, so she's the winner
Monday, March 11, 2013
Comparison
My friend Alex gave me a book to read. She was really hesitant – she didn’t know when would be the best time for me to read it. It’s a book about death and mourning and the deep and manic pain that comes when a loved one dies. It’s called The Long Goodbye by Meghan O’Rourke.
Meg’s mom died of colorectal cancer at the age of 55. The first half of the book is about the lead up to the death – the journey from the diagnosis to the passing of her mom. The second half (which I haven’t read yet – I’m saving it for later) is post-death, and the aftermath of the loss. It’s brutally honest, and reveals Meg’s pain and the brave and insane ways she deals with this loss. She’s caring, needy, selfish, and giving all in one messy package – it feels like me.
Even though I try not to compare my experience to anyone else’s I can’t help doing it, especially when reading a book where Meg’s mom’s cancer had spread to her brain. Meg’s mom, Barbara, even had the CyberKnife (read: a pointed radiation “knife” that cuts out brain tumors) that my mom chose not to have.
But Barbara didn’t have a stroke. And the cancer spread to her bones as well. So Barbara was in lots of pain, on lots of narcotics, and slowly loosing her ability to function. She alternates between being her old self – aware, capable, focused – and her cancer-created self – confused, unfiltered, declining.
And after reading Meg’s account of her mother slowly losing her mind, I realized I’m really glad my mom had her stroke.
Yes folks, that’s right, I said it: I’m glad my mom had her stroke.
Because if she hadn’t she would have slowly lost her ability to function. She would have slowly gone from speaking normally to being unable to complete full sentences. She would have slowly moved from being able to care for herself to being completely dependent on others.
Instead, she had a stroke. Things didn’t slowly change – in the blink of an eye everything was different. So instead of seeing her slowly decline, we got to see her slowly improve. We were thankful for every word she gained instead of cursing God for every word she lost. We were ecstatic that she remembered us at all, instead of pained that she couldn’t remember who we were. Each word, each thought was a gift that we could have easily not had. It’s still painful seeing her now, slowly loosing some of the words and movement she gained, but it’s easier than seeing her decline from herself at 100%.
The stroke was a mercy. A small mercy, mind you. But a mercy nonetheless. It gave us a new perspective, a new shape to the world. And it gave her a childlikeness that keeps her laughing through it all.
And so Meg, thank you for sharing your story. Thank you for being so honest. Thank you for giving me a community in which to experience my pain, and for a clearer perspective on my own loss.
Meg’s mom died of colorectal cancer at the age of 55. The first half of the book is about the lead up to the death – the journey from the diagnosis to the passing of her mom. The second half (which I haven’t read yet – I’m saving it for later) is post-death, and the aftermath of the loss. It’s brutally honest, and reveals Meg’s pain and the brave and insane ways she deals with this loss. She’s caring, needy, selfish, and giving all in one messy package – it feels like me.
Even though I try not to compare my experience to anyone else’s I can’t help doing it, especially when reading a book where Meg’s mom’s cancer had spread to her brain. Meg’s mom, Barbara, even had the CyberKnife (read: a pointed radiation “knife” that cuts out brain tumors) that my mom chose not to have.
But Barbara didn’t have a stroke. And the cancer spread to her bones as well. So Barbara was in lots of pain, on lots of narcotics, and slowly loosing her ability to function. She alternates between being her old self – aware, capable, focused – and her cancer-created self – confused, unfiltered, declining.
And after reading Meg’s account of her mother slowly losing her mind, I realized I’m really glad my mom had her stroke.
Yes folks, that’s right, I said it: I’m glad my mom had her stroke.
Because if she hadn’t she would have slowly lost her ability to function. She would have slowly gone from speaking normally to being unable to complete full sentences. She would have slowly moved from being able to care for herself to being completely dependent on others.
Instead, she had a stroke. Things didn’t slowly change – in the blink of an eye everything was different. So instead of seeing her slowly decline, we got to see her slowly improve. We were thankful for every word she gained instead of cursing God for every word she lost. We were ecstatic that she remembered us at all, instead of pained that she couldn’t remember who we were. Each word, each thought was a gift that we could have easily not had. It’s still painful seeing her now, slowly loosing some of the words and movement she gained, but it’s easier than seeing her decline from herself at 100%.
The stroke was a mercy. A small mercy, mind you. But a mercy nonetheless. It gave us a new perspective, a new shape to the world. And it gave her a childlikeness that keeps her laughing through it all.
And so Meg, thank you for sharing your story. Thank you for being so honest. Thank you for giving me a community in which to experience my pain, and for a clearer perspective on my own loss.
Subscribe to:
Posts (Atom)