Glioblastoma: Anyone else struggle with being a caretaker?

Posted by daydreamer21 @daydreamer21, 17 hours ago

Just wondering if anyone else struggles with being a caretaker for their spouse?

My husband was diagnosed with a Glioblastoma over 4 years ago. Now while some people would call this a blessing others may think of it as a curse.
I struggle with being a caretaker for him because he is so bull headed. He’s had two major brain surgeries. First one to remove the tumor which was located on his left frontal lobe area. And second was to remove the radiation necrosis (dead tissue) mass which they also found some tumor cells within.
He has done really well considering his diagnosis and his surgeries. However the most debilitating thing is depression, anxiety, anger/irratability:mood swings and tonic clonic seizures. (Grandmal seizures). He’s lost his sense of self the past 4 years and that has not helped anything. And the longer he’s alive it just seems he gets more and more depressed and is angry. Because his seizures don’t allow him to have any independence. IE: driving, working, playing, going places.
Also it had taken a huge financial toll on us as a family. He was the primary bread winner.
Being a caretaker to someone who is constantly mentally degrading you is very hard. We don’t have much support close to us. And it hasn’t been easy. Just wondering if anyone else relates.

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catv7 | @catv7 | 7 hours ago

Hello,

While I can’t relate to the glioblastoma diagnosis as my tumor was and is a mengioma (benign) I know how unnerving my diagnosis is, I can’t imagine how he must feel. It’s not typically a great prognosis. I suggest counseling for both. Also you need and deserve a break. Do you friends/family or adult chit who can help? Does your insurance provide some help? You need to have some time for yourself whether it be lunch with a friend, staying with a friend or getting your nails done. You can’t pour from an empty vessel. Does your husband have a friend who can take him to lunch or bring him dinner to give you a break? There are some Facebook groups who you can get support and vent. Maybe church? Just thinking outside the box. You can private message me. I’m a shoulder to lean on. Where are you located I’m happy to go and give you a break if close.
Prayers for you & your hubby. Mindset is everything maybe a good book about some one else going through same diagnosis. 🙏🫶🏼