Caregivers

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Caregivers

by TeeMac on Fri Nov 16, 2018 09:00 PM

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Hello All,

My husband 57 years old was diagnose with Glioblastoma Grade 4, Feb 26, 2018 and  was told that no doctor would touch his case.  This news turned our whole world upside down.   Thanksfully my husband's primary doctor gave us 3 experts in the Neuro-Oncology Field. The tumor can not be moved because it is in the pons which is part of the brainstem; it only can be shrunken.  After battling with his insurance company, we were able to get one of the best Neurosurgeon in Los Angeles @ USC Keck.  After two Tumor Boards, both agreed that a biopsy was the only thing that could be done; in order to diagnose what kind of tumor he has and how to treat the tumor. June 1, 2018 he had the biopsy and the surgeon was able to get two samples.  Prewarned of the side effects, my husband has lost feeling in his left hand and now has drop foot with his left leg.  He can't write or hold anything in his left hand.  And to top that, he is left handed. So now he has to learn to write, eat and everything else with his right hand. After 42 days of Chemo (pill form) and 30 days of radiation, the tumor hadn't shranked. Then he started 5 days of chemo 300mgs of Temodar and 23 days off of chemo. After a month the next MRI in August showed the tumor had shranked.  They up the dose of Temodar to 380mg. After he started this around, we noticed that it was hard for him to swallow and he kept having to spit; all day and night long.  The next MRI showed that the tumor had growned and that explained the changes in his throat. Now he is on Avastin Infusion every two weeks and 210mg chemo pill once ever 6 weeks. After a couple of days, he's back to eating more and actually finishing his meals and is sleeping longer. As a caregiver, has anyone experience mood changes in their patient. Memory lost and attitude? Do you get frustrated and tired with helping your patient do everything? Sometimes he would wake up every 2hrs during the night; therefore I'm up too.  That's hard when you have to go to work the next day. Does anyone know how to get fund to pay a persnal caregiver?  He's at home most of the time and know I did find someone to come in  3 days a week and 3hrs a day to help him with his therapy and make sure he eats lunch.  Also, help him with anything else he needs done.  Some days I just want to cry.

RE: Caregivers

by stevew7000 on Sat Jan 26, 2019 05:57 AM

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That's a tough story. I took care of a family member with Alzheimer's , but not with as much drama.  Sorry no one wrote to you sooner.

RE: Caregivers

by brennastonge on Mon Feb 25, 2019 12:46 AM

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I am having the same problem, I am not able to get paid nor work as I need to take care of my mother. Have you had any luck finding more information on assistance? Being a fulltime caregiver and not being able to take care of yourself is difficult, I am only 26 years old and had to take on the care of my 58 year old mother. 

RE: Caregivers

by kak123 on Mon Feb 25, 2019 01:38 AM

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Have you asked a social worker at the hospital about applying for assistance. I do believe the state of Calif. will pay a family member for caregiving. It is all consuming and your feelings are normal. I have forced myself to carve out little bits of time just for me and it has helped.....until I walk back in the door.

Some days are better than others; try and hang on to the memories of the good days.

RE: Caregivers

by TeeMac on Thu Feb 28, 2019 06:05 PM

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Thank you for replying; I will speak with a social worker for assistance.

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