Reply To: Please help me!

July 30, 2009 at 1:40 pm

Hi! So sorry your family is going through this. So many thoughts, so excuse the out of order writing. About the feeling of dying, obviously depression, totally normal. Cymbalta is a depression med that also seems to help with pain, ask about is as well ask for a psych consult or the social worker at the very least. There are usually specially trained sw for chronic illness. If she still has pain, Lyrica or neurotnin (up to 3000 mg daily I believe) is used for gbs pain. The seizures seem to be a huge red flag, they usually are not mentioned on the site by other members unless of course a dx that is independant of gbs. Certain meds CAN cause seizures. Have they been dx as seizures? Just a little something to put your mind at ease regarding the care at the hospital. Although it is evident based on your description the hospital DID mishandle some things, they DID treat aggresively, ie 6 rounds of ivig and pp. Some on the site DO NOT get that for some time. Another consideration is pp immediately followed with ivig. Has her progress remained stable, or are there worsening symptoms? I ask this just to be sure that it is NOT cidp, as cidp would necessitate further treatments to keep attacks at a standstill.
C-Diff sucks, my father in-law had that. Nothing you can do now, just be sure once she is out of quarantine you keep a close eye on nurses/docs using sanatizer evry time they enter her room.
About her kids, they are young and do not understand, not to mention frightened that their mommy is not with them. The hospital itself is scary to kids, not to mention seeing their mom sick. Perhaps you guys could try easing them back into visiting her via web-cam. They would still be in the comfort and safety of their home, not having machines all around them and still be able to talk to their mom. If you do not have a web cam on your computer, you can get them pretty cheap, or maybe ask a neighbor. The hospital we were at had computers they lent out to patients, so you could look into that and be covered on that end. Then there would be some real-time interaction.
About the husband, think about these things and see what you think. Although this is not happening to him, it is. His world is turned upside down too, his wife is sick, he is managing the kids, house, work and his own mother. That alone could be a strain. He is confused and angry, probably in denial. You have to cut him some slack, sorry guys, don’t want to offend anyone, but not all men are built with instant caregiver quality. How about a family meeting at the hospital with your sister, her husband, you as a go between, his mom any other possible caregivers and a social worker? Maybe your church or local HS has some volunteer program that could assist in child care or things that can be done around the home. How about a cleaning lady temporarily if the budget allows? What about just asking friends to organize a meal schedule? When my friends husband had a stroke, I organized a plan of asking other friends to pick a day and bring meals over, evrything included, paper paltes, drinks etc. so it was easy. Are other family members willing to help? If her husband and mother are not the type to ask for help, they will need to learn how quickly. That was my biggest problem and I sm still paying for it. Ask for help.
Sleeping…..hard enough while in a hospital, compounded with everything else, near impossible. My son has just now started sleeping better 2 years and 10 months post cidp dx. He is 12 years old, 10 when he got it.
In conclusion, I see the social worker as the first thing you should look into or a psych consult w/someone exp. in chronic illness and families. Second, call the gbs/cidp foundation and have a packet of info sent to your house, it has caregiver info and dr. info. Third, make sure you ask for copies of all records and start a binder for her so she has record of everything when she returns. It will save time and $ and frustration if you do it now. Fourth ask about the webcam for communication with her kids, slowly re-engage them, maybe ask them to make some cards etc. Maybe once quarantine is over, you can pac a picnic lunch and wheel her and the kids down to a serenity garden (our hospital had one) for a picnic. Fifith, acknowledge the husband and let him know he is going through things too! Most importantly, tell her there IS a light at the end of the tunnel and she will come through it!! We did, and now my son is playing like a little boy again. Maybe not as fast as he was and with some pain, but he IS doing it and he is a stronger person for it!!! Good luck, private message if you would like to talk on the phone.
Dawn Kevies mom