Jackie My Mother in law always seems to be in constant pain. Moaning and wincing moving all around, always trying to get comforable. Has anyone else had to deal with this?? Should I be giving Jackie more then just OTC pain reliever. when do you know that they need more then just an OTC meds???? Just latley it seems to have gotten worse. Just more constant is the best way I can describe it.
If you have had to give more then an OTC pain reliever what would you say is the best one to give???
We put Jackie into a nursing home today, we all seem ok with it right now. she just is getting to difficult to handle any more. She is so stiff does not work at all anymore. It was time for the move.

Phyllis:

This can be so miserable to manage; you don't mention if she's getting the OTC stuff preemptively (IE, on a schedule rather than when she seems to be in pain), but that's the first step - most people can tolerate 6 to 8 extra-strength Tylenol (500 mg) per day, given as divided doses (1000 mg q 4-6 hours). There is a liquid available.

Many doctors who treat the medically fragile aged are fond of the Duragesic patch, a relatively powerful opiate pain medication that is delivered through the skin - no pills to swallow, no first-pass liver metabolism, no peaks and troughs - just smooth consistent pain relief. It is not without side effects - these drugs are pretty hardcore, and are especially notorious for causing sedation, lowered cognition and constipation, but the patch is a really solid way to control pain in people who have trouble swallowing.

Eric

Phyllis,

Where/what is the pain? Are these muscle cramps? If so, you might try quinine. It's available as a prescription tablet but is rather expensive. I'm looking into giving my father flat tonic water (via his feeding tube) as I seem to recall learning in Africa on safari that gin-and-tonics were the drink to have for quinine (anti-malaria).

If the pain is severe, definitely go the opiate route.

Often times Hospice knows more about treating/managing pain than primary care physicians (or neurologists). We have one person in our local support group who was put on hospice by the MD in order to manage pain. You might consider that route as well.

Robin

Here here to hospice for pain management - they also might have some ideas about the aspiration issues.

As for the tonic...sadly, tonic isn't what it used to be - when cheap generic OTC quinine got pulled from the market, I did the math, and I think I figured out 5L/day for malaria prophylaxis; since I use a lot more gin than tonic....

You might look at a health food store; the original source for quinine was bark of some tree or another...oh, here it is...cinchona.

Eric

Eric,

I subsequently found this bit on Wikipedia when searching for "tonic water quinine":

"(M)ost tonic water today contains a medically insignificant amount of quinine, and is thus used for its flavor only. It is consequently less bitter, and is also usually sweetened. Some manufacturers also produce diet tonic water. In the United States, the Food and Drug Administration limits tonic water quinine to 83 ppm (83 mg per liter if calculated by mass), which is one-half to one-quarter the concentration used in therapeutic tonic."

Maybe I need to travel outside the US and bring some non-FDA-approved tonic water home. Then the issue will be the plane ride. Sigh.... Obstacles at every turn!

Still, I'm going to try the flat tonic water to see if it helps. It can't hurt (if I de-gas it well enough).

Robin

The pain I amnot sure what and where she is having pain. Thats my problem. She may not even be in pain but just feeling bad. She might be there just enough to know that there is something wrong(dementia) and just doesn't understand it. Since she has pretty much stopped talking it's hard to figure out.

wow that was a lot harder then I thought it would be. I am filled with such saddness over this. in my head I understand the we could not give her the care she needs and that the nursing home is the best place for her right now. but holy cow that was difficult. the nusing home doctor has already pissed me off and he and I are having a "come to jesus meeting on monday" He walked in the JAckies room saw what meds she is on and said the .25 klonopin that is just started 2 weeks was so little that he dicontinued it. without speaking to me without knowing Jackie nothing just be reading her list of meds. I was so mad I was spitting. notice the time I am writing this 6:11 am I can't sleep because I know that JAckie needs these meds to make her comfortable and to sleep. I am from NY I live in NC, but if he does not take the time to listen to me he is going to see the yankee in me come out. I am not a shy person. He will be hearing from me. During the admitting proess i explained to the head nurse as much as I could about LBD abd gave them the list of meds never to give, advoid, use with caution. I tried to explain LBD and the side effects she tried to explain to the doctor what i had told her but he did not listen.
thanks for letting me rant I dod feel a slight bit better today, I am sure with time I will feel more at ease.

Hi Phyllis,
I am sure this was very difficult decision, but it has been made and now you must be her advocate, NH's are places that you have to watch all the time, don't let them tell you, you need to tell them.....I would copy as much as you can from the LBD sites and bring the information to them and make them read it because if they have no clue they can't take care of her the way she should be taken care of, LBD DOES have special needs!
Good Luck!