Saturday, January 9, 2010

Two very bad days

Wednesday and Thursday were nightmarish, each in its own way. All day on Wednesday I kept having very clear visual hallucinations, and had to keep doing reality checks. For example, Nancie was sitting on the couch, near my recliner, and then I "saw" her get up, walk across the room, and adjust the thermostat. Then I would open my eyes, see her on the couch, and ask her if she had just been at the thermostat, and she said no. Or another time I asked her if she had been covering her eyes with her arms--also no. I "saw" Marty standing next to me while he was in the next room--simple stuff like that. The hallucinations themselves weren't scary, but the fact that I kept having them was. It was probably a little too much morphine--I am very sensitive to painkillers (and mind-altering drugs in general). For example. Valium, which makes most people pleasantly drowsy, makes me cry uncontrollably. This is called a paradoxical effect, and I have frequently needed to persuade doctors to prescribe a different drug when they wanted to use Valium (for minor surgical procedures, for example). I also react very badly to Novocaine, and until I found a dentist who used gas preferred getting my fillings done without any anesthesia rather than go another round with Novocaine (which makes me go totally bananas--to use the technical term).

I called Lauren several times--she is so calming and helpful, even over the phone, and she told me not to take any more morphine, use some of the ABHR gel, and call her back in an hour or two. She consulted with the hospice doctor, who prescribed a small dose of Haldol, but that is a drug I don't want to take (although she explained that they prescribe it as a small fraction of what is used for psychosis). But the hallucinations lasted only that day. I've had visual hallucinations before, always related to prescribed drugs (except once when I was in a half-awake state, which my wonderful therapist assured me is a time when the brain is in an abnormal state). Probably the strangest hallucination I ever had was about thirty years ago when I was in the hospital after severely straining my back, and was in traction and on painkillers, so was completely immobilized and totally dependent on nurses. I particularly liked one particular (male) nurse, so it wasn't surprising when I "saw" him walk into the room and stand by the side of my bed, but then it got a little strange when he stood up on the bed, straddling me by putting one foot on each side of the bed frame, and than began pulling tiles off the ceiling! At that point, I finally realized that it wasn't happening!

Thursday the problem was totally different. I didn't take any morphine and the hallucinations stopped by themselves. But when I got up to go to the bathroom in the morning (having slept in the recliner), I sat on the toilet for about ten minutes, gasping and wondering how I was ever going back to the living room, and eventually deciding that I'd go to bed instead, since that's only a few steps. Even then, I was gasping and couldn't catch my breath, and just felt horrible in every way. I called Lauren, semi-hysterical, saying "hospice promises that you will not suffer, and I am suffering." Again, her wonderful, calming reassurance overcame my hysteria, and she instructed me on a schedule of taking various drugs and calling her to report on how I was feeling.

At some point, and we don't know when it happened, Marty discovered that my oxygen hose was disconnected! Obviously, without supplemental oxygen, I'm going to feel really badly, but even after he reconnected the tubing, and I did restorative breathing ("in through the nose, out through the mouth," as slowly as possible). Nancie is particularly good at giving me verbal cues when I start gasping. Having her here two hours Monday through Friday has worked out really well, as she is both excellent at the technical aspects of the job, like bathing me, but we have also developed a real rapport, so I just enjoy her company. She, like Lauren, is very good at calming me down. She also really enjoys my cats, and of course it makes me feel good when anyone loves my wonderful Oliver and Gilbert.

I didn't eat at all on Wednesday or Thursday. I stayed in bed all day on Thursday, feeling far too weak to make it back to the living room. I was thirsty (my drink of choice these days is ginger ale), but not at all hungry, and I was so exhausted that I fell asleep early in the evening. Marty asked me if he should wake me for "Jeopardy!" (which comes on at 7:30), and I told him to try. I was actually able to stay awake for the half hour (and even answer the questions coherently), but shortly after that I fell asleep for the night and slept until well after six--about ten hours of sleep! I woke up several times during the night--I had severe post-nasal drip and kept waking up to cough), and I was lying on my hip, which started to hurt. I hadn't taken Celebrex (or any of my meds) and decided that I would eat some crackers in the morning so I could take a dose (which needs to be taken with food). About noon, Nancie heated up some canned macaroni and bean soup, and during the afternoon Ann made some vegetable and barley soup from a package, and I ate quite a bit of that, which tasted so good. These days, soup seems to be my basic food.

In addition, Marty has come down with a really bad head cold, so he feels awful, plus he's concerned that he avoid contact with me as much as possible. He slept on the daybed in the office on Thursday night to protect me, and he's been using hand sanitizer any time he needs to touch something that I will touch. So far, so good, but it's really hard to see him so sick and still needing to take care of me.

Fortunately, when I woke up on Friday, I could feel right away that I was doing much better. I was able to get up and go to the bathroom and back without assistance, and once I did my monitoring (the machine goes on at 10:30), I was able to go back in the living room, where I am always much more comfortable. Lying in bed to sleep is fine, but sitting up is never really comfortable--I start out in a sitting position, propped up with pillows against my bedrest, but I am constantly sliding down and needing to be pulled up, whereas in the chair I am cradled in a comfortable position that supports my whole body.

After sleeping for ten hours the night before, I wasn't expecting to get much sleep last night, but I did get a few hours, and I feel well rested and very hungry. I'm hoping Marty gets up soon, but I want him to get all the sleep he needs--he was so exhausted last night, but I'm hoping sleep will be restorative.

Last weekend, there was a minor "tragedy" when I discovered my Itty Bitty Booklight was broken in a way that was not fixable, so I went onto the Web and searched for a replacement. The original (the "Itty Bitty" is actually a trademark) was surprisingly expensive, but I found a substitute which was only $15 including shipping, and it arrived yesterday. It's a beautiful bright purple, and much sturdier than the old one, which I got years ago as the "free gift" for joining a book club (if it's a gift, by definition it's free), so I certainly got my money's worth.


  1. Maybe a Mattress Genie will work for you - it can inflate to elevate the head of the bed and you can decide how much to elevate.

    It might be helpful so you can continue to use your own bed.

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  3. Very supportive article.I understand every point in this blog, give some more information about hospice patients.

  4. It's amazing how I found this blog.It was if I was somehow directed here.I've read the post and it makes me sad I didn't drift here sooner.Wish I could've known Judi.Thoes who did you're truely blessed to have know and loved her.

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  6. Be VERY careful when choosing a hospice care team. MANY stop the patients REGULAR medications, feeding tubes, etc. They offer comfort medications - ativan - morphine etc. which slows the heart rate and speeds up the death process. I am sure there are some quality hospice teams but MANY are not. BEWARE!

  7. Inspiring even in the face of adversity, like being confined and suffering from disease. Keep up hopes high!

  8. Great post! This blog could be very useful for people who have similar experiences. Thanks for sharing!

    - Susan
    Senior care in Canterbury NH

  9. My wife's mother is pretty old and not able to take care of herself anymore. My wife has tried to help take care of her but doesn't have the time to care for her and our family. So we are looking into hospice housing. We wanted to research about it and see what it is like. This blog was perfect and gave us a great idea of what it is like.

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