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Old 04-13-2018, 01:57 PM
 
Location: middle tennessee
1,839 posts, read 860,876 times
Reputation: 6538

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Quote:
Originally Posted by Jezku View Post
my fiance died two years ago of cancer in a hospice.
i don't know enough about the opioids and their side effects to understand the changes in his behavior
when i last visited him. how often do the staff administer the pain medication?

the first time i visited him, he started talking distractedly and angrily to himself. i chalked it up to the opioids
and let him know "i just keep in mind it can be the medication talking' to reassure him for the next time.

i noticed the schedule went from 7am-7pm PST on weekdays; opioids were given around each meal time.

on the weekend i last visited him, the hours were 7am-5pm PST. i arrived around 4:45 pm (i live in another
county and have to commute there).

when i entered the room, he was delighted, recognized me. a little while later, he responded to casual
remarks in a somewhat surprised way.

he had back pain and wanted to be shifted to the side, so i let him know i would alert the staff.

the staff came, but didn't do what he wanted, and then rushed out again.

i was sitting across from him, and gently blew him a kiss. he did the same.

suddenly, his eyes grew very wide, he looked bewildered, then very angry.
he pulled himself abruptly over to the side of the wall, grabbed the curtain
around the bed, and didn't come out from behind or make any sounds.

a while later, he fell asleep. i gently touched his arm, kissed his cheek, and told him how much i loved him
before i left.

he died the next afternoon at 4:30 pm PST.

I'm glad you found a place to talk about your experience. It was a few years before I stopped going over the last days of my husband's life. Gradually, I was able to think more about the good times we had together. I wish this for you.


I worked as a hospice nurse. There was a time near the end when I would be instructed not to move the patient. This may be why the staff did not turn your fiancé. I expect he was getting whatever medication was needed to alleviate his pain, whenever it was needed. That would certainly affect his behavior. I'm glad he was able to recognize you and show that he was glad to see you, even for a brief time.


How are you doing now?
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Old 04-13-2018, 02:10 PM
 
1,485 posts, read 603,027 times
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Possibly it was the cancer, not the meds. My father in law was hallucinating a few days before he passed away in a nursing home. I told him he was hallucinating and what he was seeing wasn't real. He died a couple of days later. I have been hospitalized and got opiods every six hours for several weeks, and they didn't affect my moods or my perceptions, just took the edge off the pain and let me sleep.
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Old 04-13-2018, 05:21 PM
 
291 posts, read 76,493 times
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Thank you so much for the compassionate words! i have been trying to understand that last visit in an objective way ever since; it's a strain without that kind of information. the staff was, in general, hurried and rushing about, at least understandably so. they were thoughtful but could not tell me anything, when i asked how he was before that time he died. i respect the protocol of a hospice as i'm not the staff, etc., myself.
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Old 04-13-2018, 05:26 PM
 
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newcomputer,
my fiance had some complaints about the efficiency of the staff; he was glad when i was able to take care of things like water and urination when they were elsewhere. i made an effort to let them know his needs as much as i could reach them.
what you say about not turning the patient is helpful. he was crying "Side! Side!", so when i could not do that, i told him
i'd get the staff.
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Old 04-13-2018, 05:30 PM
 
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bobspez ,
interesting about hallucinating...the expression on his face after that experience with the bed looked 'disconnected'.
with the meds being given every six hours in your situation, that gives me some perspective about any related behavior.
if the meds weren't included in his behavior changes--or at least not predictably--maybe part of his last days with this cancer.
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Old 04-13-2018, 05:40 PM
 
Location: Wisconsin
16,528 posts, read 16,025,498 times
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Quote:
Originally Posted by Jezku View Post
Thank you so much for the compassionate words! i have been trying to understand that last visit in an objective way ever since; it's a strain without that kind of information. the staff was, in general, hurried and rushing about, at least understandably so. they were thoughtful but could not tell me anything, when i asked how he was before that time he died. i respect the protocol of a hospice as i'm not the staff, etc., myself.
I am sorry for your loss.

I suspect that the staff were unable to answer your questions as your fiancé may not have given his written permission for them to speak to you. Or he may have transitioned to the point where his cognitive level did not allow him to give permission and you were not previously listed on his medical power of attorney form. Of course, those are just my guesses.
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Old 04-13-2018, 07:40 PM
 
Location: middle tennessee
1,839 posts, read 860,876 times
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Quote:
Originally Posted by Jezku View Post
newcomputer,
my fiance had some complaints about the efficiency of the staff; he was glad when i was able to take care of things like water and urination when they were elsewhere. i made an effort to let them know his needs as much as i could reach them.
what you say about not turning the patient is helpful. he was crying "Side! Side!", so when i could not do that, i told him
i'd get the staff.


I'm not making excuses but its a hard job and there is often a big turnover in staff. It takes an emotional toll on the workers. Not everyone is well trained. That said, its our last chance to do all we can for someone in your fiancé's position.


I resented the care my husband had so much. It added to my grief. I am still torn about this part of my own story. Its hard to forgive.


Be thankful for the things you were able to do, and that your fiancé showed his appreciation. We can only go forward.


How are you doing?
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Old 04-13-2018, 10:13 PM
 
Location: colorado springs, CO
4,050 posts, read 1,804,360 times
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OP,

Patients in Hospice may be on a pain medication schedule, such as every 4 hours (usually at 8, 12, 4, etc) or every 6 hours (usually at 6, 12, 6, etc) or patches that are applied every 1-3 days.

Much of the pain management that is ordered in Hospice is “PRN” (pro re nata), meaning “as needed”. Hospice care is allowed a much more liberal scope for medicating for pain than the hospitals are.

This is how a typical “PRN pain” order may read:

“Morphine Sulfate Solution (Roxanol 20mg/ml): 5 - 10 mg PO/SL q4h PRN, with rescue dose of 5 mg q1h x 3 if needed.”

Basically: Liquid morphine; 5 to 10 mg by mouth or under the tongue, every 4 hours as needed. If the patient’s pain is not well controlled, they may have 5mg of Morphine sulfate solution once an hour, 3 times. (usually 3 times within 24 hours, for a maximum of 9 doses every 24 hours) if still not adequate an RN can call the doctor for options).

This will not be a scheduled dose; some patients may only need & request something for pain at 8am, 3 pm & midnight, whereas with others; the doctor will need to be called because they maxed out their meds.

So your SO could have been medicated at any time for a varied amount of times. There would be additional options for comfort also that may have been given; not necessarily just opiates. Such as: Benadryl for itching, Valium or Ativan for seizures, Neurontin for neuropathy, etc ...

Some patients may not be able to communicate or complain about pain & will be on a schedule but since even unresponsive people can still feel pain, there are PRN orders available if symptoms of pain are observed by the nurse or a family member.

It’s hard to know (over a forum) if your SO’s behavior was due to opiates but typically a sign of over- medication would have been slow, shallow breathing. Other signs used in the hospitals (such as “pinpoint pupils”) do not apply in Hospice because their focus is supposed to be on comfort per the patient’s wishes.

There are many things that could affect behavior; oxygen level, blood sugar, etc ... And sometimes a person has their own reasons that won’t make perfect sense to us but that’s okay; it’s not a reflection on you. You were doing the best you could under the circumstances & that’s what mattered.
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Old 04-13-2018, 11:20 PM
 
291 posts, read 76,493 times
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coschristi,
this was very informative. it was liquid morphine that he was given.

Thank you for the thoughtful moral support about this first-time experience.
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Old 04-13-2018, 11:29 PM
 
3,977 posts, read 5,268,320 times
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When my husband was close to the end, he told me that the only thing he feared was that as his cancer progressed he would be in an altered state and do or say something that would be hurtful to me. As it turned out, this didn't happen. But had he been able to, you fiance may have said the same thing. No one wants that disturbing picture or unbalanced words to be the last things in the mind of the loved ones. But sometimes it is the way it happens. It can sometimes be because of medications, but it can also be because of the metabolic changes that are happening in the person's body. I had a friend who died when his cancer spread to his liver. Liver dysfunction causes changes of consciousness and changes in cognitive and emotional reactions. So does kidney dysfunction. There are many changes in the body that can cause a person to not be himself. If this happens, we need to try to remember that these behaviors are not the real person; they are the illness or medications affecting their thinking. As time goes on, I hope that the more prominent thoughts about your fiance are the loving words, the fun times, the things you appreciated and loved in him. That's how it is with me. I had a disturbing visual image right at the end, and when I start to remember that, I remind myself that the image was not him, and was not what I want to remember, and I go on to other, wonderful memories. I know that image is there in my mind, but I have learned to just get past it. Focus on the things that enriched your lives together, on his gratitude and on your own. I am noticing that the more I think about how grateful I am, the less I think about negatives.
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