Summer’s end. It’s a fitting time to talk about one of the most daunting challenges facing acoustic neuroma and other brain surgery patients: the pressure on family.
In my experience, entire lifetimes are measured by “before the surgery” or “”after.” Everything changes:
1) Money gets scarce when the family budget meets a nonworking spouse and large medical bills.
2) The brain patient grows impatient. After looking death in the face, most of us come out of the haze slowly, way too slowly. When we finally feel back to “normal,” we want to make up for lost years—to cherish every moment with fewer compromises. That can be hard on a marriage.
3) The family members burn out. Caring for a brain patient is terrible, hard work. Families get little support for their sacrifices and their daily lives suffer from lack of funds to do the things they want to do.
4) Actual brain changes lead to personality changes in the patient. I am not the same person I was before the surgery.
5) Alcohol and drugs can play into further stress between spouses.
I recently read one study that suggested 78% of brain injury patients were divorced within 4.5 years (Thomsen). Then I read another stating that only 17% were divorced after two years, (Virginia Commonwealth University). Both were qualified with the fact that they were not terribly broad.
My experience? My husband was terribly supportive until alcohol entered the picture. Even then, he remained supportive, pitching in around the house and such, even when he was no longer someone I could trust. My kids were fantastic and my broader family really helped . . . until just weeks after the surgery one suggested that maybe I was unintentionally milking the situation. (The average brain patient takes months to return to full capabilities.)
I like to say that the first six months post op were a haze, the next six felt a lot like looking at life through a glass window, comprehending it, yet feeling separated from it, and the next year was spent slowly chipping away at the glass. And I chipped hard.
• Give yourself and your family as much time as you can for processing the changes.
• Seek counseling and help from a mental health professional.
I cannot offer wisdom, only experience, because after 25 years of marriage, I am divorcing my husband, four years post op. It’s been a test of our deep affection to go through this and remain some sort of friends. But it’s heartwrenching to look in the face of alcoholism knowing it was accelerated by his loving me through brain surgery.
Silence would be more private but these things need to be faced and discussed. I can recommend one technique that did succeed:
No matter what happens, keep loving each other.