Reading your stories, taking in this information is such a blessing and help, I can’t tell you. And it’s the most detail I’ve found so far re: dealing with the aftermath of being with a loved one with a terminal illness. Although there’s no telling when the aftermath will come in our situation, it feels like there are hands to hold here. Thank you, thank you Jean and Char. The site is beautiful to look at and I appreciate the large font.
In December ’09 my radiant, loving, active, 77 years-young Mother had a seizure and we immediately assumed it was a stroke. No, it was a large brain tumor, grade IV glioblastoma. Surgery was “successful” but hit the motor strip/right parietal lobe hard and resulted in left side paralysis, heartbreaking personality change (including mood swings, aggression, and denial of deficits), and a journey through treatment and rehab attempts, falls, and repeated hospitalizations that have left her and our family exhausted, scared and – words can’t describe. Yet, she and my father, with the help of 24-hour caregiving at home (she requires complete transfer assistance…until the money runs out, then….?) are fighting for life like mad. Her scans have been clear since chemo and radiation.
After Mom’s operation, Dad let us know that he had been diagnosed with beginning vascular dementia, and that Mom had had falls, been dragging her foot, and been fatigued and sad for about four months prior to her seizure. Being incredibly independent and not wanting to burden the kids(!), they kept it to themselves.
I took four months off work and was primary caregiver until a fall off a wheelchair ramp ended in a wrist fracture. Now, after various half-week arrangements, I stay with my parents two days a week (an hour and a half away) and work three days a week. Music is a sweet refuge for both me and Mom…I bring my guitar and we sing together whenever we can, and she loves to see pictures and videos from gigs. My two brothers and I (and they’re each really helpful in their own way) have each had various stress-related ailments in the past 20 months, and we are doing our best to support Dad physically and emotionally. Mom in a lot of ways has had characteristics of a hospice patient since all of this began…visions, aversion to any change, not wanting to be left alone, sleeping a great deal (but not at night).
So we’re in this holding pattern until someone’s condition changes. Taking complete leave from work is in the future, we just don’t know when. The anticipatory grief is intense for all of us as we face the unknown. Mother is (and was) a larger than life Italian-American matriarch, the powerful center of our family, and we feel like a galaxy spinning out of control. We are drawing on the huge well of love, support, and humor that our parents have given us. It’s a sacred, raw, strange, and mysterious time.
I know we are forever changed by these experiences, and one thing that’s struck me is the compassion and vulnerability here. Hope to get to know you better.
And…thank you, Dan. [Fogelberg]