mother is in pain, HOW CAN WE HELP HER

    • Anonymous
      December 11, 2007 at 12:18 pm

      Hello family,
      For those of you who don’t know me too well, I am here on the forum because I am the one with severe CIDP. A little re-cap on my mother who’s 89. She’s not well enough to go through tests to diagnose, but indications are that she has diabetic neuropathy even though she’s borderline. She does have the symptoms. Throughout the past five years, she’s had many many many falls and in October she had the fall that broke her leg. She’s at home now. Surgery could not be done to repair the leg (doctors feel she wouldn’t survive) and it will just heal the best it can. I don’t think she’ll ever be able to stand and bare weight on the leg. She’ll be confined to bed for the rest of her life! We have hired a live-in caregiver to take care of her.

      I think you GBS’ers who laid in a hospital bed will understand. My mother moans and cries from the pain she’s in. It rips me apart when I sit by her bed, she’s such a good mother! She tells us that it’s her back that hurts so much. Is there anything that can be done to ease the back and make her just a little more comfortable. Years ago, she broke her back and a nerve was nicked during the surgery. She can’t change her laying position because the broken leg would make her scream.


    • Anonymous
      December 11, 2007 at 12:31 pm

      Is there anyway to have a nurse or cna with her?
      Is pt/ot coming to the house?
      Is she at home with you?
      Does she have pain med?
      Sometimes a slight tilt with a pillow to the back will relieve some pain.
      Speaking with MD about pain management maybe helpful.
      How are you holding up? Prayers are with you this day.

    • December 11, 2007 at 12:37 pm

      Hi Liz,
      I am sorry about your mother, you are in my thoughts and prayers, your mother as well.

      Is she on any pain meds? Is it to the point that she could get a pic line and have iv pain relief? Is she in a medical bed with adjustments?

      I surmise that as long as she can communicate, she will let you know the pain level, at least that is positive.

      Do you like the nurse?

      Good luck!


    • Anonymous
      December 11, 2007 at 2:12 pm

      Hello family,
      We think my mother would qualify for hospice as well as having the caregiver. We’ve talked to hospice and they will bend their rules and take on someone who has no quality of life from an illness or injury, as long as they are not overwhelmed with terminal patients. We can also get a medical homecare agency. Both hospice and medical agency will provide a nurse, social worker and PT/OT, but they come for a minimum of 2 hours a day. The live-in caregiver is essential, my mother could not be cared for at home without that. I live with my mother in her house, an extension was built on to make an accessible (wheelchair) apartment for me.

      My mother is on neuronton 800mgs, three times a day and viciden (spel?) as needed. My brother went to see my mother’s doctor yesterday to talk about her care and medications. We are hoping her doctor will agree to make home visits.

      I want to have hospice or the medical agency come in so that we have the services of a nurse and it will relieve the live-in caregiver and give him some free time. MY BROTHER DOES NOT THINK WE NEED A NURSE, he thinks the caregiver is enough and until he sees that it’s necessary, nothing will be done.

    • Anonymous
      December 11, 2007 at 2:45 pm

      I am terribly sorry to hear that she’s in such pain. Does she have a hospital bed at home? I’m thinking that maybe someone could adjust it so the way that she’s laying isn’t putting so much pressure on her back. That’s the only thing that I can think of in this situation.

      I hope that the dr will make home visits & be able to give you some insight on how to make things more bearable for her.

    • Anonymous
      December 11, 2007 at 2:45 pm

      First off, I can’t take pain medications – even 2 Advil and I will have side effects so I have resorted to some rather unusual methods for pain relief. For the most part my body produces enough endorphins that I’m not in a whole lot of pain but sometimes that just doesn’t work out and I end up moaning and groaning and making my husband nervous.

      The only thing non-intrusive I can think of to try is the hot/cold treatment that works pretty well for me. I put a cold pack on until it’s completely numb, then put a heating pad on until it’s hot, and repeat for up to 30 minutes. Usually it confuses the nerves enough that I get some relief. Otherwise, I resort to increasing the pain for awhile deliberately so that when I stop whatever is making the pain worse, the original pain level feels better. I really don’t recommend this with your mom, it’s usually a last resort for me…

      I guess the other thing you can try is these lidocaine patches my orthopedist gave me. They aren’t as intrusive as an oral medication, though obviously some of does get into the blood stream. I used one shortly after my peroneal nerve surgery and I was amazed at how much it helped. I’ve used Icy/Hot patches and ThermalPads for years but they don’t deaden the feeling quite as thoroughly as lidocaine. Unfortunately I had a few side effects from it so I can’t use them regularly, plus my pain is usually intense, but fleeting so it’s not worth numbing an area that might not get shot again until tomorrow, if you know what I mean.

      I feel for your Mom, it totally stinks not to be able to get any pain relief. All my friends and family talk about the wonders of narcotics after surgery and for pain relief but it just makes me shudder. A couple of years ago I tried Demoral after surgery and spent 24 hours throwing up, it finally took a visit to the ER and a triple dose of phenergan to bring it under control. Trust me, you don’t EVER want to throw up for 24 hours – my stomach muscles were shot for weeks.

      Anyway, if I can remember anything else that has worked I’ll let you know. Does she have an air mattress? That has made a huge difference in how my bones feel in bed. I recently saw one in a catalog where you can also elevate the head and feet just like my hospital bed just by pushing a button. I’d seriously consider getting it if it wasn’t a queen size.

      The last thing I have to say is that if she doesn’t keep that hip mobile, no matter how painful, then she really won’t walk again. If this is not a concern then I would not put her through the pain but if she ever wants to be mobile, or even sit in a chair again you can’t let that joint solidfy in it’s current state – you have to keep it mobile. At her age I would question the aggressive therapy it would take to her her walking again with a broken hip and whether it would be worth it – however, it might be worth it to her if she could at least sit in a wheelchair every now and then and that wouldn’t be nearly as painful as walking.

      (OK, I confess most of my first-hand knowledge of hip replacement/ breakages comes from having two dogs, brothers, with hip displasia but some comes from two relatives with three new hips between them, and one relative too old for hip replacement that never got out of bed again.) Judging from my mother who is 73 and had both hips replaced but can outwalk my husband with a good breeze behind her – vs. my brother in law who is 45 and can barely get around 10 years after his surgery – doing the PT, no matter how painful, is the key to walking normally. My mom got out of bed the day after the surgery both times, did all the PT they asked of her and then some and now runs circles around the rest of us.

      Anyway, I hope she gets some relief soon – at least try the hot/cold thing, it’s non-intrusive and you can stop it anytime she gets uncomfortable. Then maybe look into the lidocaine patches, they are about the size of a paperback book so can cover a decent amount of territory.

      Take care of yourself too, while you’re at it. 😉

    • Anonymous
      December 12, 2007 at 7:13 am


      I think with Hospice, they can give her an IV med for pain. Also, the air mattress might really help her for pressure spot pain. My mom has recently requested egg crates but the therapist advised against them b/c of the bacteria they can harbor.
      My mom is now on a very strong narcotic twice a day with a lesser strong one in between. Alot of people think my mom is dependant on them now.
      And, I think she is…but, she needs them for pain anyway and with nothing else, let her have the dang pain meds.

      It’s amazing how our siblings can be so unaware of the reality of things and the true actual needs of our sick parents. I really can relate to what you are going thru with your brother.

      My heart breaks for you to hear you are going through this and I Pray that you and your mom soon have relief.
      Keep us posted.


    • Anonymous
      December 12, 2007 at 11:01 am

      They used a phentanol patch on me when my back was raising heck with me. There are different doses they can use and they last for awhile it was the only thing that helped with my back pain. I don’t know if they will work for your mom, but thought I might mention it. I guess they are expencive so I don’t know how it will work.