Sunday, May 6, 2012

The Bedroom Door

So, you think a lot about where you are going to die when you have terminal cancer. All the obituaries say that people who lose their "battle" with cancer die at home, surrounded by family, which has always sounded vaguely ominous to me, kind of a threat. Who wants to be surrounded at the end?

I picture lying on my bed, looking up at all these blinking coyote eyes, all of them waiting for me to expire. Even creepier, in my fantasy, there is somebody, possibly my sister, urging me to "let go, that it's okay, you can go."

Lord help me. My family wants to kill me.

In reality, I think I'll probably end up all alone in my bedroom, and I think that people might even forget about me until that dead chicken smell starts wafting through the house.

Since I live with only men, maybe not even then.

I have precedent for that idea. My house is configured such that my bedroom is at the very back of the house, connected only by a long hallway buffered by a bathroom. It was an addition, done years before we moved in. If the bedroom door is closed, it's almost like being in a different home. You cannot hear anything that goes on out in the living spaces, and more concerning, nobody can hear you, alone in the bedroom.

Even my internet doesn't go that far - I had to put in a repeater so I could get wifi in that room.

When I got c-diff, I spent two days seriously ill at home before I went to the ICU. The first day, I stayed in bed all day, weak, in pain, unable to get up, and very very thirsty. The only thing that happened was at some point, my husband closed the bedroom door, cutting me off from the world and leaving me helpless and alone. I took the opportunity of him being close to yell at him to come and help me (I really needed water) but he didn't hear me. While my yell is often quite strong, possibly strong enough so that the neighbors would be able to hear me, at that time it sounded more like a whispering kitten. I was too weak to really do anything, and that included sitting up. Naturally, my husband didn't hear me, and he didn't check on me. I didn't see him the entire day, until he came to bed that night at about 10:00.

I scolded him as much as a person full of sepsis poisoning her bloodstream can do - reminded him to please check on me during the day if I was ill; that I was not a normal sick person who just needed extra sleep. He got me some water that night, which I managed to take a sip of before I passed out.

I was not able to get up the next day either, and he forgot me again until about noon, but after I did what nagging I could in my debilitated state, maybe with a tear or two, he came in and checked on me every hour or so thereafter, bringing me a cut up apple and more water. Of course, nobody knew how seriously ill I truly was, we just thought I had the flu. But, isn't that possibly the way it can go when you have cancer? You can be fine one minute and then you die of a flu the next?

When my temperature climbed that afternoon, diarrhea started, and I called the doctor, we went to the hospital, and that's when we knew how bad off I'd been and how close to death I really was.

Death had been standing at the foot of my bed and nobody came to chase him away.

Afterwards, we had a little talk about this situation. Me and my husband, I mean, not me and death. I reminded him that I do not have a normal healthy body, and that I don't think I should be left alone all day if I go to bed sick, and that the bedroom door should be left open so I can hear things and call if necessary. If I'm sick enough to stay in bed, than I think somebody should check on me once in a while; make sure I at least have water, am still breathing, those simple things you do for each other in a marriage.

I realize he got the short straw in this whole deal and he probably does want to just shut the door and forget it all, but I'm still here so the door has to stay open.

He seemed to understand my nervousness about this; how very helpless I was being critically ill and not able to care for myself to any degree. It happened so quickly too - I was entertaining guests for Thanksgiving dinner Thursday night and Friday morning I was near death. We learned, or I thought it was a "we," that there are no more guarantees and caution should be the norm.

But learning is difficult in some people who shall remain nameless but who wisely did not make the career choice to be a nurse, and we have exhibit A: this weekend. I am having my normal stomach pain, for two days now some new spinal pain, and some constant low-level nausea. This morning I woke up with a headache. I got up at noon-ish, drank some coffee, took some headache and nausea meds, and went back to bed. My husband came, and I heard the bedroom door close, and once again, I was locked away from the family with no way to call for help if I needed it.

Fortunately, I am not as sick as last time so I got up a couple of hours later when the headache subsided, and here I am, picking pieces of my hair off my keyboard.

But, if I hadn't gotten up, I know I wouldn't have seen him until a) he wanted to know if I wanted to watch a TV show with him or b) bedtime.

I am a unique combination of person who horriblizes everything and also feels like she's going to be fine. So, while I lie there I think that this spinal pain is probably mets and if I move wrong I'm going to be paralyzed, and that's why somebody needs to check on me and bring me water - I also am planning for guests next weekend and putting together my wardrobe for the week. Maybe that confuses my family; I don't know.

Yes, I do realize that death is typically a long process, and it starts with not being able to eat and drink and ends up with the coyote eyeballs, but after having an experience like fulminent c-diff colitis and being in septic shock (and fully awake and aware the entire time) I also know that there are can be sicknesses in between in which the person needs help, and during those times, a gal gets thirsty, even if she can't walk.

So, I'm going on record in saying that if I have to go to bed in the middle of the day because I don't feel well, I want somebody checking in on me every hour or so to make sure I am a) breathing b) have water c) cancer hasn't broken through all my bones and left me lying helpless as a jellyfish.

Also, if you know who to call to have this family surround sound system put in, let me know.

As long as it's possible to turn it down.

.

41 comments:

  1. Baby monitor, Ann. We pick up truckers from the damned interstate on ours. Surely the signal would make it through your bathroom? :)

    Be well!

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  2. Vent as much as you want!!!!

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  3. Ohh does that ever ring a bell with me. I had an infection: klebsiella pneumonaie. The implant was falling out, oozing and bleeding, and it was finally repaired on an emergency basis late in the day. Home by 9 pm and I hadn't eaten since the day before, still woozy from the anesthetic and he went to play games on the computer. I had to feed myself.
    "Check on seriously ill spouse" isn't in the job description evidently. It has to be applied with a 2 x 4.
    Elaine F

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  4. Ann, my Dad used a baby monitor to keep tabs on my Mom the last year or two of her life, when she was ill with Parkinson's disease. It works great! If she made any sound at all, when Dad was in another room, he could hear her, and he would go and see what she needed.

    She also had a bell (the old-fashioned kind)by her bed she could pick up and ring when she needed help.

    Hey I had an idea too! If your car has an alarm, keep your car keys in bed with you. That way, if you need help, you can set off the car alarm; he should be able to hear that!

    Off to work on more clever ideas.....
    Diane Siburt

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  5. I was going to say walkie talkies but baby monitor is much better. My husband just bought us some for our move to Florida b/c in his world, our cell phones aren't enough. Really, I know he's just always wanted a walkie talkie b/c he spent half the night he got them 'calling' me over on the other couch "breaker breaker one nine, this is big bear calling little cub. little cub, please exit at the next rest stop so big bear can use the facilities. over." Yeah, it's going to be a fun 5 days down to Florida. Hang in there Ann!

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  6. There's something about a shut door - I haven't been fond of them since I was a teenager, but now when I'm in a room and someone shuts the door, it feels like a restraining device - as if I'm being forsaken. Everyone else is there, and I'm not there. I shout "Leave the door open!" each time...

    Can you text him?

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  7. Ditto the baby monitor. My dad used it with my mom, and it made both of them more comfortable.

    Air horn maybe? :)

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  8. we have a phone with 3 cordless handsets that can intercom each other - with one in the bedroom it means I can use it to call my husband if i need him without him having to remember to check on me. I think that is the problem with long term marriages - (we have been togetheer 28 years) that you get so used to doing things one way they cant quite make the change. It doesnt mean they are not worried about you, it just means after years of living wwith a independant women who usually just wants to be left alone when shes sick they have to be retrained. Doesnt help that sometimes I do want to be left at home. I have already decided I dont want to die at home - for the reasons mentioned in your first paragraph - I am quite an introvert at heart and actually dont want to be surrounded by people all the time

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  9. I'm just afraid my neighbors are going to listen in with the baby monitor! He doesn't carry his cell on weekends or I could just call it.

    I could go low-rent and get a bell I guess, but if the bedroom door is closed, nobody will hear it, and that also negates the car alarm idea, which is fantastic by the way! My husband and son spend their days in the room the farthest from the bedroom, so really cannot hear, they need to check-in. I may have a construction guy take that door off; that'll do it.

    I hate to be a wimp and the type that needs to be checked on but then again, sometimes you just are so sick you can't do self-care. I think it's hard to get that message through. I thought after C-diff that might wake him up and make him realize what we are dealing with, but I guess not.

    It's a man thing, they aren't trained from early days to be caretakers. This post is my 2 x 4. :)

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    1. When our daughter came out of hospital after brain surgery we bought a really obnoxious sounding wireless doorbell. It kinda sounds like a cow in labor when the button is pressed.

      You can hear it outside it is so loud and the sound is so obnoxious that no-one ignores it.

      She has the button and the wireless receiver/noisemaker is placed centrally in the house.
      Here is a link. The reviews say the button gets stuck, but ours has been fine since 2009. Other complaints are that it is too loud. We have it on foghorn sound

      http://www.amazon.com/19209-Wireless-Door-Chime-Buttons/dp/B0018QECK4/ref=sr_1_1?ie=UTF8&qid=1336402104&sr=8-1

      Hope it gives you some food for thought.

      I for one would rather have the Coyote eyes than nothing

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    2. If you are concerned about privacy and baby monitors, there's a Fischer-Price baby monitor with privacy protection - it scrambles the signal so that only the receiver paired with the base picks it up. You could also turn the base station off when you aren't alone, but that can be hard to remember to do.

      Cordless phones are scrambled for privacy - the Panasonic has an intercom feature and we've found them to be reliable. A phone with intercom has the advantage that there is a ring tone to make someone aware that you want to talk and of course that you can communicate two ways.

      Even with the door off, it may be hard to hear you - especially if you aren't up to yelling.

      Maybe they could set the kitchen timer to go off in an hour to remind them to check on you.

      Bluedasher from breastcancer.org

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  10. I love how you manage to be so funny when talking about something so serious. And it rings bells with me too! Baby monitor sounds like a good plan. Ann in England. xx

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  11. My husband is wonderful in every way, but... like yours, he's a man. If I'm not physically in the room wincing with pain or gurning with thirst, he seems to assume all is well... if he assumes anything at all, that is. After my mastectomy/reconstruction I could hear him downstairs making appropriate noises of joy or disgust while watching the football or rugby, while I was upstairs unable to change position or get up for the loo. I ended up texting him. I totally get you, Ann... we shouldn't need technology; if the boot were on the other foot, we'd take care of them!! Ann in England. xx

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  12. I love the cordless phone/intercom idea. I may get one just so I can bug my husband while he's surfing the internet upstairs and I am downstairs doing something very important!

    You do make a good point for us all. We should let everyone in our family know what we want and expect from them. Just as important, let them know what we don't want. The coyotoe eyes - yikes! - I had not thought of that one. I wouldn't want that either!

    Now go pick out your wardrobe for the week and chug some water while you're at it!

    Hugs, Jen

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  13. When I was 22 my roommate drove me to my parent's house so that they could take care of me, since I had a terrible case of the flu. Mom put me to bed with a high fever and did not come back to check on me until 10 a.m. The next morning when I had not gotten myself out of bed. When she opened the door, she found me unconscious in a fetal position with my open eyes rolled into the back of my head. Lucky for her, I wasn't dead yet and once I was successfully transported to an emergency room I was promptly diagnosed with Bacterial Meningococil Meningitis. I remained in a coma for a week. I was temporarily disabled and lost 20 pounds in that week. It was a very long road to recovery. Yeah. I think maybe you would be better off laying on the couch in plain view. Outa site outa mind. That is never a good thing. And even then I would keep that 2x4 right at your side just in case!

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  14. I had to laugh many times reading this. It really sounded like it was happening to me. I have been following your blog almost from the beginning. I was diagnosed in October 2009 with breast cancer, and having at the moment forth round chemo being at StageIV. You have been one of my many online lifelines. First time commenting! Raija from Down Under

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  15. Ann as always you beautifully mix the reality/honesty with the humor! Too bad you can't rig a device that cuts off the power to the TV at random intervals.

    My DH was awesome the first 24 hours after each of my surgeries. But then things would revert back to normal, tho they were far from normal for me. It's definitely a guy thing! I too had a bell. I rang it. He never heard it.

    Getting your bedroom door off its hinges is a good start. And while he's at it, ask that construction guy to bring you a real 2x4; paste a photo of your face on it, add a wig (or not) and set it somewhere that will be jarring when you family sees it (um, maybe the bathroom?). That way, they *will* be reminded to go check on you (unless they are drinking the same amount of fluids they are giving you — in which case, you've got trouble in motor city!). :-)

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  16. Thank you for your honest explanation of what you are going through every day of your life. I miss seeing you every day at Arcade and laughing together about all the crazy things that happen in a middle school.
    Love ya,

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  17. I too live with three men, I too have been "locked away" in the bedroom. Cancer is isolating enough without the added closing of the bedroom door! The night before my BMX, I left the house for an hour and a half and no one even knew I was gone!

    I am thankful for you and your articulation of the truth we all feel, but sometimes cannot bring ourselves to say outloud. We would all like to leave cancer in the bedroom and shut the door!

    I like K's idea of laying on the couch! But if you need to retreat to the bed, maybe you need a really big bell, or one of those airhorns...and those boys of yours...sure, like mine, they carry their phones - text them a 911...momma needs a glass of water!

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  18. I can't stand to be in a bedroom with the door closed whenever I'm sick. That's Rule #1. I would say a baby monitor is a great idea, although that would require listening on the other end. :) I use a bell whenever I'm ill ... or I call the house phone with my cell phone, or I call my husband's cell phone.

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  19. I've been in the same situation. But, since I've recovered, I still can't stand the door closed. I've learned if I can't holler when I'm weak (I'm still not well entirely... leukemia) to pick up something handy and bang it on the wall. Don't know if that will help with your household configuration. Works pretty well if a window is close by, too. Also, I would keep bottled water in your room from now on. You shouldn't have gone so long without water! If he or the boys are on computer and you have a laptop with you, perhaps you can use chat mode? or email? But, doubt that's much help. A friend to come over and hang out? Or perhaps a friend to just give you a call every hour and they have to answer the phone?

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  20. How about telling your husband to shape up?! In a nice way ofcourse...

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  21. Baby monitor was my suggestion. Or you could get a silver bell to ring imperiously.

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  22. Oh, coyote eyes, some one telling me I can die now.....I may opt for inpatient hospice when death comes closer. Meanwhile I will move one of the house remote phones to my husband's study and start shopping for a baby monitor. I am fine now but recently spent weeks fighting an MRSA. Dear husband was very good about checking but he gets involved with work and the world recedes so far he cannot hear me call to him, even while standing in at his open office door. Endearing but dangerous.

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  23. I always had to have the door open whenever I wasn't well enough to be out on the couch. It didn't matter how horrible I looked or who came over, shutting the door made me feel cut off. Luckily our bedroom is an addition that used to be a garage, so it is next to the kitchen.

    I agree with the baby monitor idea, did you know there are ones with video these days? You could then yell AND wave at the same time.

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  24. "In reality, I think I'll probably end up all alone in my bedroom, and I think that people might even forget about me until that dead chicken smell starts wafting through the house.
    Since I live with only men, maybe not even then."

    That paragraph cracked me up. My husband probably would think it was just the stench from his workboots.

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    1. Ann,
      I vascillate on my opinion of your DH's behavior. It makes me angry and worried about you to be truthful, then I think, I don't know him, so I can't KNOW what is going on. Chronic illness wears everyone out as you know- I have come to two conclusions- 1. he's numb, stressed and on auto-pilot- he doesn't think any of this is funny at all, and is being slowly tortured and the thought of loosing his beloved wife, so he ignores it is happening and to do that he ignores you 2. he's a bastard and always has been...You know your husband, or at least you did before care-giving and cancer cam long. I know, I am a caregiver of sorts, and it is odd the stuff stress can do to everyone. Practically, make sure you can be heard. I don't want to find you died and not cremated, but MUMMIFIED In your own bedspread. Not pretty. ;-)
      Praying for you pretty lady

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  25. Tell your husband what goes around ALWAYS comes around. He'll get his.

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  26. "... he didn't check on me. I didn't see him the entire day, until he came to bed that night at about 10:00."
    O. M. G. That is Terrible, Ann. I can hardly believe it. Definitely need that 2 x 4.
    My husband also went a bit 'numb' as per "he's numb, stressed, on auto-pilot - doesn't think this is funny at all, and is being slowly tortured at the thought of losing his beloved wife, so he ignores it is happening ".
    But still, you need him NOW. You are here, NOW. He needs to wake up to that fact.
    Love and kind thoughts coming your way. We love your posts ........... Laura

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  27. Hey now, my husband is a good guy. He brings home the bacon and now he has to cooks it. He does most of the cleaning now, and drives the kid around to various places and takes time off to do it, and he also takes me to all my SF appointments. He does a lot of the work I used to do.

    I think I figured it out. I just found out my work has a terminal illness benefit, which means I get paid for not being there for a certain time, and when i told him, he said to me, "You won't need that - you are going to beat this thing." So, I think he is truly thinking that when I go lie down that I'm just behaving like a normal woman with a headache. He is still in denial about the seriousness of my illness.

    Yes, he has to get over it but he doesn't have evil intent. I was not getting my point across verbally so I did it in writing and I'm guessing I'll never be ignored again.

    If I am, THEN we can start calling him names, but until then: he's just doing what he knows to do. This is very hard on our loved ones too, we hae to remember that.

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  28. Hi,
    Just a thought but is there a comfy room that you like that's closer to the living areas of your home? If so move into that room for awhile. I switch rooms around my house depending on the noise levels. I feel for you though.

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  29. Maybe try one of these?
    Esky Remote Control Dog Training Transmitter & Rechargeable Collar , 100 Level Shock and Vibration:

    http://www.amazon.com/Control-Training-Transmitter-Rechargeable-Vibration/dp/B0055QN4HK/ref=sr_1_2?ie=UTF8&qid=1336622273&sr=8-2

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  30. I can relate! I was foolishly standing on the counter in the laundry room putting away jars on the top shelf, stepped back and fell to the cement floor! OUCH! I was yelling and screaming and swearing.......Nobody came to help...Kids were playing and watching TV. I finally stood up and stumbled out to where they were and asked them "I fell off the counter! Didn't you hear me calling for help?" "No Mom, we thought you were just screaming like always!"

    Moms are invincible -- even when very sick. I vote for the 2 x 4 and fog horn. Love Ya.
    Mt Hood Gal

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  31. Thank you for sharing your story. My friend just recently passed away from breast and lung cancer. It was difficult and like your blog said "the family was there", it was a very intense time. But keep fighting and make sure someone checks on you every hr.
    There is a new leukemia treatment used that sounds amazing. The hope is to extend it to other cancers too. You can read more on CancerResearchCure.com

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  32. I marvel at your ability to write an amusing post about a not-so-funny situation.

    My husband is a good guy, but I can imagine him doing the same thing that yours did. I am not going through what you are, but I do have a chronic illness. My husband tends to leave me to recover in solitude. One time he even decamped -- packed up the kids and went to stay at his mum's house. I guess he thought he was doing me a favor, but meanwhile I was home alone with no one to bring me food or anything. Of course, I don't think he would do that now because I have developed an annoying habit of falling down the stairs.

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  33. My mother had an old school bell when she was sick and I was a kid. I could here that bell ring at the other end of the house.

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  34. I live alone Ann, since my significant other left me. I fear the same things. :(

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  35. I just came across your blog and it is both wonderful and frightening. I was just diagnosed with breast cancer and have been reading blogs, cancer sites, reconstruction information and am overwhelmed. A friend is going to set up a blog for me and I have to decide what exactly I want to put on it. You have encouraged me to not lose my sense of humor, be honest and make sure the bedroom door is left wide open. Warmest wishes.

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  36. All I can say is MEN! At first I thought, "What a jerk" about your husband....but then, he is probably a typical man. I can see my man doing the same thing, probably thinking he is doing a good thing by letting me rest. Suggestion: buy a baby monitor. You can probably pick one up cheap at a yard sale.
    Cancer warrior
    www.perksofcancer.com

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  37. I'm sorry. I know how being seriously ill can be, and how horrible it is when your supposed loved ones bail on you. My man has decided that, after my being sick for two years, I have 3 months to magically get better and get the hell out of our apartment. He says he still loves me, but he doesn't care where I go. The worst thing about it all is if I were to punch him in the face, which he richly deserves, then I'd be the one to get in trouble.

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  38. A solution from another situation, but when an elderly neighbor was getting frail and spending large amounts of time in his bed, the family bought a doorbell system. The button was easily reachable from the bed, the bell was in the living room where everyone could hear it and respond quickly.

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