My husband and best friend’s final days…
He’s waiting to die. I’ve tried to wrap my head around it ever since this nightmare started. Nine months now. Nine months of caring, crying, worry, sorrow, grieving, wondering, and waiting. Emotional and physical exhaustion and I’m struggling. There are days I can’t seem to pull it all together. I’m at the point where it’s so hard to see him without bursting into tears. Tears that come no matter what I do to try to stop them.
In August, I finally gave up trying to care for him at home. He’d developed aspiration pneumonia and I had medical transportation take him to a local hospital. He was there for a couple weeks then transferred to a nursing facility. There he developed aspiration pneumonia again along with a severe infection from an non-healing pressure ulcer. He was transferred to a different local hospital where he spent about two weeks.
After that he was transferred to another nursing facility — this one forty minutes from where we live because a bed wasn’t available at the local one — and again developed aspiration pneumonia and was transferred to a local hospital there. He’s back at the nursing facility forty minutes away with a feeding tube since he can no longer have any food or liquids. He weighs eighty pounds. Eighty pounds of skin and bone. He can’t speak or eat or move or anything other than exist. He’s alert and knows what’s going on. Is that a bad thing or good thing? I don’t know. I hold his hand and talk to him and tell him I love him.
The staff at the nursing facility contacted me about hospice care. Upon hearing the end of life jargon such as “keeping him comfortable and out of pain” and — since there’s no hope for any recovery — “is his life as it is now something we want to continue” I agonized over it and eventually signed the papers.
During this entire time, I’ve been to see him almost every day. And on the days I don’t go, I punish myself with guilt and accuse myself of being weak. I’ve practically begged his mother, father and other loved ones and friends to visit him and they don’t. His father and mother have been to see him twice in the past nine months. Other family and friends have seen him maybe two or three times. I hear “it’s too hard to see him that way” and now along with that “he’s so far away”.
My frustration with all of them has turned to anger and resentment. If I don’t go see him no one does. And I don’t understand why. I hear “he’s so lucky to have someone like you” as if I’m some kind of special person or hero. I know how difficult it is to see someone you love ravaged by illness and physical deterioration. It’s a cruel reality that’s part of the journey in life. Too many people seem to either avoid or deny that part of the journey.
So right now, it leaves me and him. Me and him waiting for him to die.
