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Living with Brain Tumor or Serious Illness and Relationships

Posted by mimispree @mimispree, Dec 20, 2022

I have been participating in Headway in the UK, but I am now glad to find a support group in the U.S.

My treatment began with a diagnosis and resection 30 days later in 2014. The signal something was wrong was trigeminal neuralgia on the right side of my face. I was incorrectly diagnosed as having an Acoustic Neuroma, but after surgery I was told they aren't sure what kind of tumor I have because so many nerves/brain stem were consumed. Long story short, lots of additional surgeries, disability benefits that took 2 years and 11 months, and three bad falls resulting in more surgeries, my problem today is my 33-year once-happy marriage is in tatters after all of this.

I am on disability and my husband gets SS, but our savings are gone because of my medical expenses.

I noted Headway has a Brain Tumor and Relationship Support program that was spot-on, but it's not available to those outside the U.K.

Does anyone have any suggestions? Thank you.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

123carpediem | @123carpediem | Mar 24, 2023
In reply to @athena2023 "Thank you for your personal note. I thought I would hear from another caregiver but am..." + (show)
@athena2023

Thank you for your personal note. I thought I would hear from another caregiver but am gratified to hear your point of view. I believe you are right in what you say about the person I knew being trapped inside. On some level he is beginning to understand too, and we are trying to come up with new ways of living together that doesn't freak both of us out = : )
I wish you well on your journey!
Athena

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Thanks Athena! It warms my heart to know that you see merit in my sentiments.
May you continue to find passion in lifes pursuits! CARPE DIEM! Cheers and within the lesser of two evils may fortune favor the brave; hence, attempt shows the gesture of one who cares for another.
Thank you.

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nauden | @nauden | Mar 25, 2023
In reply to @athena2023 "Hi Folks, About five years ago I noticed that my husband was especially cranky and just..." + (show)
@athena2023

Hi Folks,
About five years ago I noticed that my husband was especially cranky and just thought his imminent retirement was bothering him. Then he found himself in ER with a kidney stone and came out with a diagnosis of a type of blood cancer (CLL). There was also a problem with his lungs which was diagnosed as Cryptococcus (a fungus). Back in the hospital for a lung biopsy, he had a severe stroke and took the anti stroke meds which gave him back his movement. The stroke caused injury to his right frontal lobe, then he had chemo.
Now, he is a wreck. Where before he was calm and non confrontational, now he can become anxious, aggressive, overbearing and sure he is correct when he is not, and on and on. He scares me because he forgets things, and takes impulsive risks like he is 16 (climbing on the roof in a storm to fix something), screams at people who get in his way on the road and basically hates everything most of the time. I have not yet mentioned his chronic joint pain. So, it's a mess and I am stressed but didn't realize it as everything changed gradually after the initial shock of all these events.
He has been to a neurologist and since the stroke did not effect his movement they declared him "okay." So even though my husband can sometimes become irrational he knew that the doctors had failed to help him, and decided none of them were worth his time. Trying to live with these attitudes and understand him have about driven me to the wall so I called Mayo and they referred me to this website. I am looking for ways to help my husband regain some calmness and manage his illnesses before he hurts himself. I am looking for a way to make some sense of my life living with this man I hardly know. We are both in our seventies. Thanks for taking the time to read. p.s. I really didn't know I was stressed until my doctor,after eliminating allergies and other auto immune problems, suggested that the blisters that keep breaking out in my mouth and throat are stress related. Any tips? Thanks, Athena23

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I recommend you see a therapist who has experience with caregivers. Talk to your husband’s doctor and ask for a referral based on what’s happening. Mayo has so many excellent resources! You don’t have to do this alone. Praying for peace, love and joy in your life.

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athena2023 | @athena2023 | Mar 26, 2023

Thank you for your advice. I am not a Mayo patient as my health is too good. I missed a year on my eye check ups and they said they wouldn't see me again. I didn't think of trying to see a therapist through them based on my husband's condition. I may try again. Thanks for the encouragement!
Athena

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