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Gliomatosis Cerebri - Anticipating Care Needs when husband has Parkinson's

Sherrie loves mom
Posts: 1
Joined: Apr 2017

I am so thankful to find this site as we are desperate for advise regarding caring for my in-law from this point forward.  

My beautiful, brilliant, vivacious 70 year old mother in law's preliminary ongology came back as Grade 2 Gliomatosis Cerebri last week.  The surgeon said it is diffused through her entire brain.  She developed third nerve palsy in her right eye 6 months ago and has subsequently lost sight in that eye.  Then her left eye began showing similar signs three weeks ago which led to a second MRI.  The MRI six months ago showed no cancer but this one showed a ton.  There are too many white areas to count but it's heaviest areas are the thalamus and uncus on both sides.  During the biopsy the surgeon fully removed the right uncus for biopsy, stating that it was completely diseased non functioning brain tissue.  We see the Ongologist for the final Oncology report and his recommendation for treatment this afternoon.  

To complicate matters tremendously, my father in law has Parkinsons and the dementia is beginning to set in.  She is his sole caretaker for everytihing, including bills, cleaning, groveries, medication management, scheduling his doc appts, etc.  He isn't a danger alone yet but need help with particularly meals and med compliance 3X a day.  My husband's one brother lives out of state.  

My husband is an attorney working 60-70 hours a week with the financial responsibility of many many families in his hands.  I run two businesses, my own marketing company and my parent's rental house business.  We have two sons, a junion in college, a senior in high school who is graduating in May, which is a very very busy time for any family, and a daughter that is a freshman in high school and a very driven competitive dancer.  I already struggle greatly to find any down time or to take proper care of myself between my work and managing an extremely busy family.  We took over the financial and management burdens of my aging parent's failing home rental business, which added another 10-15 hours a week to my already busy schedule.  Two sets of parent and neither successfull financially so the burden falls on us.  We do well financially but we are already stretched very thin with two in college next year and the extreme health care costs for our family of five since we are both self-employed.  

My in-laws have very little money in savings, and what they do have will go to medical bills, but too much to qualify for Medicaid.  No long term care insurance and certainly not enough money to fund any care for themselves over these next few weeks or years.  We do not have room for them in our home and we are all so busy no would could care for them here anyway.  

We love them very much and will certianly do our best to carve out time for a handful of visits every week and possibly one doctor appt, but we both fear they are going to require far more than that, possibly 24 hour care, very soon.  Althought it isn't possible for either of us, I fear it also might not be avoidable until they can qualify for Medicaid and enter care facilities.  

My most immediate questions are how soon they will require 24 hour care?  Will she be able to live alone and provide care for him when she comes home from the hospital this Friday after recovering from the open brain biopsy with resulting slight aphasia?  Then once she has recovered from this surgery, what will she need when her treatments begin?  Will she require 24 hour care with chemo and/or radiation?  Is there any advise on how to get them the care they need in their home or into care facilities without any money, but before they are approved for Medicaid? I would so greatly appreciate your candid feedback!! 

Thank you, thank you!!

Sherrie loves mom 

 

 

lthenderson
Posts: 19
Joined: Feb 2017

You are in a very tough situation, one that nobody wishes to be in. My advice would be to talk with your mom's primary doctor. They will be in the best position to answer your questions and also will know what is required to receive outside help or at least point you to the right resource to ask. 

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