How do I keep my dying, immobile, grandmother out of pain without her being totally drugged up?

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My grandmother is 96 and has always been in amazing health only taking blood pressure medicine and Tylenol. Last year she had a perforated bowel and the doctors performed surgery. It was an intense procedure from which she has never fully recovered. She was miserable during her recovery and began moaning and crying almost constantly. When she finally recovered to the point of being back in her home with caregivers she mostly stopped. She has always been able to carry on a conversation and although diagnosed with late onset dementia (aka old age) she always knew what was going on but forgot little things. She is now declining and will only say a few words or none at all. She yells and cries and cannot talk and it breaks my heart. My family and I are at odds because they are very trusting in the medical profession and are always quick to use medicine as the answer. My grandmother's caregivers and I all think that the medicine alters her and makes her basically just drugged up and she still just cries and her eyes are glazed over. I cannot stand to see my grandmother who has always been so full of life so miserable at the end. I don't expect a miracle but there has to be a way to make her end of life more tolerable- other then pumping her full of drugs particularly when the negative side effects are exacerbated in elderly patients.... mostly confusion, agitation, and depression. She has hospice care but they just give her drugs...my aunt and uncle are her primary caregivers as my mother (her daughter) died when I was 13. I want to speak with Hospice myself but don't want to start a family war. My aunt is not the most approachable as she has taken my grandmother's care as her primary job since she was fired/retired from hers. There's a lot of personal stuff attached to it for her. But, for me, I am simply concerned about my grandmother.... Does anyone know of any alternative care for an old woman who I love who is hurting so much??

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I agree with Shane. Reacting to someone who is experiencing chronic pain (in the case of your grandmother, pain related to an invasive surgery at an advanced age) by giving them pain medication when it becomes apparent they are in pain is not the most beneficial way to administer pain meds. I'm sure your hospice providers would agree.

As Shane suggested, give your grandmother the lowest dose of pain meds that are available on a regular schedule and don't deviate from that schedule because she appears to be comfortable. She's comfortable because her pain is being addressed. If your grandmother is given a regular dose of pain medication on a regular basis she's less likely to appear glassy-eyed and sluggish. However, she may indeed demonstrate these side effects. But which is preferable? Your grandmother yelling out in pain or pain-free with glassy eyes?

I worked in hospice for many years. When I wanted to see what the lowest dose of pain medication was I would begin by giving the lowest dose and then paying careful attention to my patient's pain level. After an hour (sometimes less if the pain was bad) if the patient was still in pain I'd administer a half dose and wait and see. If that did the trick then I would know that I would have to administer a dose and a half every 4 hours. I would not let the pain break through after those 4 hours because chasing the pain is much more difficult than staying in front of it and it's easier on the person. When someone is not under effective pain management and is having pain that is not being medicated that pain builds up so if someone at that point tries to control the pain it will take much more medication than usual to get that pain under control. The person gets a large dose of pain med at once and that's when you get someone who is visibly medicated and experiencing side effects. Give a small or average dose every 4 hours regardless and the outcome is much more beneficial for the person.

P.S. I'm saying "every 4 hours" but you follow what your hospice workers advise.
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Late onset dementia is not "Old age". It means that grandma's brain is broken in ways that may make her terrified. It did that to my mom. She imagined she had lepsrosy; that she was going to Hell; that the IRS was coming for her.

Psych meds (antidepressants and antianxiety meds ) helped alot.

At the end, mom looked more terrified and grief stricken and possibly in pain. Hospice helped with morphine for pain and Ativan for anxiety.

It sounds like what you'd like is to have grandma back, happy and cheerful, even if not speaking. I don't think you're going to get that, sadly.

Can you work with Aunt and Hospice to work on a med that will control her anxiety and fear?

I'm sorry that you're going through such a sad time.
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Betty, I don't know of course but I think you might need to go back a bit to understand what your grandmother's priority needs are.

Perforated bowels don't just happen. I wonder if there are some important gaps in what you've been told about your grandmother's medical history.

Your aunt and uncle must have a lot on their plate at the moment, which might be one reason they're difficult to talk to. But if you happen to be in the room when hospice staff are seeing to your grandmother's care, you could ask if they can explain what is happening and what you should expect next. They can't (they shouldn't, anyway) go into confidential detail; but if you're right there, with implicit consent from your grandmother, I can't see why they wouldn't be happy to talk you through what is going on.

I'm sorry you're losing your lovely grandmother in this painful and distressing way. I hope you'll get some helpful answers about what is being done for her.
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In a word, no.

You are in quite a difficult situation now with your grandmother at the end of her life, and need to decide what is best for her and this means providing comfort. GM deserves to pass pain free and you all have thankfully made the proper decision for her care - hospice.

It’s hard to let go and it’s hard when you look a tour grandmother now and realize that time has changed her as time will do for all of us. 

I would suggest giving her pain meds provided by hospice on a routine schedule to “stay ahead” of her pain so that she has consistent pain control. If you’ve been given a dose range, find a dose that will, when given regularly, maintain a low pain level for her. Please try to prevent “rebound” pain that occurs when the pain meds have worn off and GM begins to exhibit symptoms of pain again as this defeats your goal. Find a dose and time interval best for GM & stick with the schedule, as when the dose & time vary too much this could backfire unintentionally and thus provide  inadequate pain relief, which is not your goal now for grandmother. You don’t want her to pain free and comfortable and then abruptly forced to experience pain again before the family medicates her & the pain subsides again.  The time it takes for her to achieve pain relief will be agonizing for her - thus her family as well.

Reaching the end of life stage for the family is a heartbreaking time. The only objective for you now is to keep your grandmother comfortable and pain free, even if her eyes glaze a bit and she appears sluggish from the narcotics. It’s such a hard time to maintain a balance but GM deserves to die in comfort and pain free.

Sorry you are going through this.
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