Wifes recent hospitalization

Hi all, I don't post very often but I have fairly recently posted about my wifes diagnosis of hydrocephalus. A little background: Wife is 55 years old and was in perfect health until she was diagnosed in 2/2008 with GBM, all of the standard treatments including radiation, Avastin, Temador, and many others. Tumor has been stable for several months while her condition has deteriorated. Last Monday we travelled to Duke so she could have surgery to install a shunt to control her hydrocephalus. This was to be a one day stay in the hospital then stay in the area for a few days until she was released to travel. Things went from bad to worse. Since the surgery she has been nearly completely unresponsive to questions and she performs very poorly on the standard neurological exam. She cannot eat without being fed then still has difficulty. She is now entirely bladder and bowel incontinent. She can only take a few steps and only with much help. I had to rent a wheelchair to get her home. She was in the hospital for 4 nights and saw a variety of doctors trying to diagnose why she is worse. Best guesses: difficulty metabolizing the anesthesia, shunt needs more time to help with the hydrocephalus and late delayed effects of all the radiation she had over a year ago. Until now our adult daughters and my wifes sisters have stayed with her when I am at work but now I think she needs more care than they (myself included) can give her. I am looking for suggestions on how to go about finding someone to come in during the day to care for her. I need someone to prepare her meals, feed her, change her, bathe her and make sure she takes her medications. I will take off work until I am comfortable with her care but I cannot be off an unlimited amount of time. I have so many questions and don't know where to start or who to contact first. I can probably manage to pay for the care but am curious if most standard medical insurance policies help with any of this or it there is other assistance available. We live in Southern Illinois and are not close to any large city. Do I need to look for someone licensed or certified? or is it ok to simply find someone that is caring and can do all the tasks I mentioned? We have been dealing with this awful disease for nearly 20 months but damn... I am more overwhelmed now than I have ever been. Thanks for your understanding and especially your help.

Henry

I'm so sorry to hear about your wife.  Call your insurance company.  They are usually very helpful in letting you know what is covered under your plan. They can also let you know what you need to do to get the ball rolling. For example, you may need to get your wife's doctor to write a prescription for an at-home health aide.   That has been my experience....my husband is a little too weak and nauseous to continue with outpatient physical and occupational therapy, so his NO wrote a script for him to get it at home, and we'll soon have therapists coming to him so he can continue trying to get some strength in his left hemisphere.  

 If your insurance does provide this coverage, they will contact a Visiting Nurse Association or similar agency and arrange for them to come to care for your wife.  Yes, you would want someone certified, with nursing skills to avoid  things like skin breakdown, etc.    

 My heart goes out to you. I wish you and your wife the best.  

 

 

Henry, I am glad she's still with you, but sorry about the extra logistics. You are SUCH a good man. :o) I've said it before and I'll say it again.

I would also call the county agency on aging, and the hospital social worker, and your primary care doctor............ the buckshot approach. I would ask everyone. I know a few people who provide this care who are not CNA or certified and they're wonderful but of course you'd want references.

Maybe there is a friend of the family who would like to help you with these call?. I always have friends asking what they can do for me, to help Andy. Well, one of them did some work getting the how-to of how to change my name this year... I just couldn't find the time or mental focus between my job and my family's needs. It was wonderful to have someone do all the calling and present me with a clear process, forms to fill out, etc.  Gosh we have to be creative but we CAN come up with ways for folks to help out!

All the best to you,
Sarah

mom of Andy 27 dx gbm/pnet 1/09

My son has a shunt.  Every day is a new and exciting mystery for us.  We never know what he is going to be able to do.  One minute he is walking great and the next he is so dizzy he can't even stand. It isn't like this everyday but he can never be alone.  The Dr probably told you vomiting is the biggest indicator that the shunt is not working.  Martin's shunt is programmable and  it shut off 2X without us knowing until he was vomiting.

 Best wishes for you and your Family

kozyyak