But That Doesn’t Mean We Want To

On December 5, 2007 by Eden M. Kennedy

Monday morning I woke up early because the phone — the bells! THE BELLS! — wouldn’t stop ringing. I’m at my mom’s house, in my old room, and falling right back into my old habits — barricading the door and pretending to be asleep so that everyone will LEAVE me ALONE, God! It’s like I’m seventeen all over again, and it’s not pretty.

Eventually I can’t take it anymore, though, and I get up and go to the kitchen. My brother Chris is sitting at the table with his head in his hands.

“Sorry about all the phone calls,” he says. “We had an emergency.”

It turns out my mom, who has congestive heart failure and is now a permanent resident of her own bed, had complained of some pain in her arm first thing that morning, and Chris, who’d already had the surprise of having my dad die of a heart attack on the couch six months ago, well, Chris sort of panicked.

There are two pieces of paper stuck with magnets to the refrigerator door here: one is a DNR order signed by my mom’s doctor, and the other is a notice from the hospice that says if there’s a medical emergency Do Not Call 911.

Basically, if my mom has a heart attack, we’re supposed to let her die.

But that doesn’t mean we want to.

So Chris, understandably upset at hearing that my mom was having what can be a classic symptom of a heart attack, called hospice, and they told him to get out the Comfort Kit. This is a box in the fridge that holds several doses of Roxanol (morphine sulfate) as well as an anti-psychotic, both in liquid and suppository forms. The woman on the phone explained how to give my mom an oral dose of the liquid morphine. Chris did it. My mom felt better, ate her breakfast, and happily endured a checkup from a visiting nurse who arrived wearing the longest rat-tail I’ve ever seen, as well as lots of rattly Native American fringy stuff and a thick blanket coat, reminding me once and for all that I was well and truly back in Colorado.

It could have been a deep twinge of arthritis is all. We may never know. But for now I’m spending a lot of time just hanging out in a chair next to my mom’s bed, working on my computer or knitting Jack’s hat, which I hold up periodically for my mom to see. “That looks very nice!” she says, and goes back to her own somewhat erratic knitting. Arthritis makes it hard for her to knit for more than a few minutes at a time, but she still likes doing it. It’s either that or library books. She has no use for TV.

And so it goes.

Comments

comments

51 Responses to “But That Doesn’t Mean We Want To”

  • Shit. The waiting is the hardest, isn’t it? But at the same time, those moments can be precious. Stay strong.

  • Thank the gods for hospice.

    When I was a hospice volunteer, I saw families struggle through this time. Lean on each other and the hospice workers. Sending positive vibes your way…

  • I’m really sorry. Best wishes.

  • You’re a good daughter, Eden. That’s all that matters right now.

  • People who work in hospice are AMAZING. They’re unbelievable, the things they deal with every day with so much grace. I can’t say enough good things about them.

  • Oy. I’m sorry. And yes, hospice people are angels sent to earth — I’m glad you have them there to support you. Still. Suckage.

  • (((Hugs)))

  • I just want to cry over what you’re all going through. I’m so glad you have the Comfort Kit, though, and the hospice workers to call.

  • When my dad was dying and a hospice worker came, he was like, “Get this woman out of here! I can’t stand her!” He was all “stiff upper lip” and she was all “yes, this is sad and painful, let’s cry it out,” and ne’er the twain did meet.

    But my mom and I thought she was amazing.

    Sending you good wishes…

  • Enjoying your time sitting together knitting, that is a beautiful mental Mom/Daughter picture.

    {{Mom Hugs}}

  • I can’t even imagine how difficult it must be to see a DNR order every time you approach the refrigerator. My heart is totally going out to you right now.

  • Oh, Eden. If I could make up a comfort kit for you, I would. And, I would hand deliver it with a big, fat bow on top.

  • If a stranger thinking good thoughts for you and your family is of any comfort, then know you have mine.

  • I would like to echo all of the kind comments above. You and your family will be in my thoughts.

  • I will also chime in for the hospice people, anyone working in palliative care. Thank you people, you have helped more than you might know.

    Loving you Eden.

  • eden:
    I’ve done what you’re doing and I can tell you that, yes, it is hard, but it is also rewarding beyond words. I felt like my mom brought me into this world and I took her out. And in so doing, she taught me that final mom lesson: not to be afraid of death.

    jane

  • Thank you for posting this. My grandmother’s about to have her last chemo session, then a blood transfusion “to get her through the holidays,” then the hospice care will start and my mother will (essentially) move in with my grandparents until…she’s not needed anymore. (Fortunately, my grandfather’s also there, healthy and sane and taking amazing care of her.)
    It fucking sucks. But it is good to read about how good hospice is. That helps a lot.

  • Hi. I’m a new Fussy reader.
    This was a really moving post. Thank you for sharing it with us.

  • we just went through some similarly hard stuff. i’m thinking about you.

    i so admire your posts about this, and when you wrote about your dad’s death. it’s really some of your best writing. (like you care what i think).

  • Been there. I feel you.

  • So sorry. Holding you all in the light.

  • Eden,
    Care givers and hospice workers don’t often get the props they so rightly deserve; and I’m glad that you and your family have good people around to assist with everything your mom is going through. My grandmother is getting used to having a live-in caregiver since my grandfather passed away 4 months ago. I visit as much as I can but in the interim it’s very comforting to know that the woman who takes care of her is really incredible; and that is what helps me sleep at night.

    Take care.
    Jules

  • I’m so sorry Eden.

  • I was there recently, with my dad. His hospice nurse didn’t have the rat tail, but did choose the hippi Native American garb, and apparently was Wiccan on the side. But there’s nobody else in the world like hospice nurses, and much can be forgiven. Even those sweaters that have the neck cut out and a replacement neck crocheted in. I even forgave those.

    Best wishes for you and your family. I’ve found writing about my experience both rewarding and difficult. I hope you have a good outlet.

  • Poor Chris. It is very poignant to me that he apologized for all the phone calls.

    You two hang in there. I send you both suffocating virtual hugs whether you want them or not.

  • I think my goods may be something you would like. Check em out. No nakedness. http://www.etsy.com/shop.php?user_id=5431187

  • Thoughts are with you, and I also agree – what would we do without these fantastic hospice/pallative care workers? They are as comforting to the family as they are to the patient.

  • Great big hugs to you. Even though we’ve never met, my heart goes out to you. I slept at my grandmother’s side at the age of 19 for the last 6 weeks of my grandmother’s life with my mother and the somewhat constant presence of hospice. It’s a time like no other. I’m sorry to be awkward.
    From one yarn lover to another, I can understand it’s soothing feel, even if only a moment aat a time. Once again ::hugs!::

  • Hospice is amazing. Been there with the comfort kit, too.

    Please take care, and, I’m wishing the best for you and your family.

  • My Mom lived with CHF for years, but her health took a nosedive three weeks ago and she passed within three days. I dropped everything, walked off my job (schoolmarm at a tiny one-room school in Death Valley), and made a frantic 20 hr. trip home to Oregon to be with her, praying all the while she could hold on until I got there. She did, and I will treasure, forever, those three days that I was able to simply sit by her bedside with her.

    Whether it’s your mom’s time for the next journey, or whether she chooses to stick around for a good long while, every single moment you have with her is a gift.

    Saying prayers for you, your mom, and your family. May you be surrounded with peace, love, and some healthy bites of laughter, to hold you steady during this tender time.

    Brenda

  • There are times I have wished you could have been my mother. But today I think you’re also an enviable daughter. When I get the time machine worked out, I’ll start figuring the logistics of how to make it so I can have all your awesome on both sides!

  • my great uncle died of emphysema at home. well, sort of, because this was back before hospice. when my parents called to try to get him help to make him more comfortable…well, he died in the hospital in an elevator, waiting to get tests that he didn’t need…among strangers.

    my grandmother died a few years ago, and the difference is unbelievable. hospice managed her last days. she died surrounded by family one morning at my parents house. very peacefully, which is something to say considering she had pancreatic cancer. hospice rocks my socks off.

    i’ll be thinking of you.

  • {{{hugs}}}

    Keeping you and yours in my thoughts.

  • Eden – Your mother is surrounded by people who love and care about her. You’re giving her the best of yourselves, and she’s giving it right back to you. We’re all right there with you. – Melissa

  • This fall we went through my grandmother’s slow (too slow for her tastes) decline and eventual demise, with hospice standing by to ease the transition. Good for you and your brother for respecting your mother’s wishes, and cherish this time you have with her.

  • I can’t believe my Aunt Suzi, circa 1980 is your mom’s hospice nurse. (Try to ignore how she looks, she’s really quite competent.)

    Hang in there Eden.

  • long time reader, seldom commentor. my thoughts are with your family, i’m sure having you there with her makes her feel all that much more loved.

  • Is there anything I can do for you? I’m in Longmont, so not that far away. Even if you just want to go get some coffee somewhere. Or yarn. I’ve always wanted to go check out some Denver yarn shops.

    Lisa

  • Ugh, that kind of thing is no fun. Kudos to you and Chris for hanging in there and supporting your mom.

  • being a grown-up sucks.

    i’m sorry it’s so hard.

  • What a heavy load to bear — and the timing — well, I suppose the timing’s a minute issue, considering. Best wishes for you and your family. I’m sure your mother appreciates having you and your brother around.

  • i’m so, so sorry, eden. much love to you.

  • Thanks, you guys. These comments are really interesting, so many people with similar experiences. It helps to hear about them!

    Erika, your aunt Suzi is EXTREMELY competent but she needs more turquoise jewelry.

    Peevish, you’re in Longmont! I’m staying close to home, but thank you.

  • Enjoy your time with your Mom. It is never easy to sit and watch someone you love. For me the most important thing was taking the time to say what I wanted to say. I know I am a stranger, but I hope it helps in some small way to know you are not alone. You are in my thoughts & prayers. Eden you are an amazing woman.

  • I think it is so wonderful that your mother is surrounded by her loved ones right now. It must be very difficult for you, I can’t imagine losing my mother.
    I love your humorous, positive outlook even in the midst of sorrow. hugs:)

  • an intense time for you and your family. I lost my Dad in July, at Hospice (my mom had been there 9 yrs ago). It was an amazing experience. be good to yourself, and know that lots of people are sending good thoughts your way.

  • Yes, yes, sending good vibes from across town in Capitol Hill.

  • What a hard year. I’m glad you have this knitting time.

    Peace.

  • I so don’t envy you this experience and can’t imagine what you’re going through but I am hoping that our words lend a calming, humorous, insightful or simply touchstone spot in your day.

    I am loving the visual of you sitting beside your mom; both of you busy in your work while the day unfolds around you.

  • So sorry to hear about your mom’s worsening condition. Must be VERY hard on you and your brother. And you mom of course.

    On the bright side I am glad she can still communicate and is aware (commenting on your knitting and knitting herself). My MIL had a stroke recently which left her mind intact and her ability to speak and walk severely limited. I cannot understand the depths of her frustrations and it sickens me..