Tag Archives: home hospice

Tiny Windows of Time

I’m on Mom watch tonight. My dad thinks I’m going to wake him up at 3:00 a.m. so we can split the shift, but I’m not. I’ve determined that he is more handy during the day, while I sleep in my mother’s king-sized bed with all the windows open, sunlight and the sounds and smells of a rural fall day streaming in. I’m a good day sleeper. Dad, I have determined since I arrived home yesterday, needs a full night’s sleep more than I do.

He’s brilliant with her. I don’t know how he does it. Love, I suppose. My poor brother showed up this evening around six o’clock to catch her waking up from a four-hour doze, and she told him to stay away from her blinds. There had been talk of my brother’s changing out the blinds for more functional ones. Since her hospital bed sits in front of the big bay window in my parents’ living room, my father, at one point in the many stages of helplessness family members experience in the face of terminal illness, thought new blinds would do the trick, and he recruited my brother to do the job. After learning of this plan, the blinds became my mother’s point of reference any time she saw my brother’s face. Then Mom thought we were all sitting around her bedside in the morning, rather than at dinnertime, so she asked my brother why he had showed up in the early morning. It came out like this:

“Why are you here so early in the morning? Are you here to watch me croak or something?”

She never minced words in reality; she doesn’t mince them in terminal illness, either. Dad eventually convinced her it was evening, but she continued to press my brother about his presence in the room until Dad quipped, “We’re all here to give you a bath, all three of us.” Until she realized he was busting her ass, just like he always does, Mom didn’t give my poor brother a break.

My brother doesn’t know what to do any more than any of us. Dad has the most experience caring for Mom, but her symptoms change rapidly, hourly, in hospice. Nurses who know the most about what is happening come around once in a while and take charge and sometimes provide useful advice, but then one hour lapses into the other, and Dad and I begin to bicker about how we’ve interpreted that advice. Dad often won’t accept my interpretation.

I feel like I’m in the way. Mom wakes up from time-to-time, and I try to give her medicine (ahem, morphine), and she tells me to go back to bed, that I’m making her nervous. She’s not used to 24-hour vigilance. She just wants to die.

My friend who recently lost her mother in at-home hospice told me to tell Mom what I wanted to tell her and do it as soon as possible. Turns out that the best time was any day prior to yesterday, when I arrived here. I wasn’t expecting to see what I saw. Dad had never said the word “hospice” when I’d called him. Two weeks ago, she’d been a different woman, reading and checking out Facebook and fretting about the state of the sheets in the spare bedroom or the laundry, basically being a sicker version of her usual self. She still hadn’t tried chemo, and we all still had a little hope. My father hadn’t been forthright about how rapidly she was declining, I think because he was too busy caring for her in ways that his own frail body couldn’t sustain.

She was still tinkering around a little with her tablet early yesterday, before I arrived, which means she was tinkering around on Facebook. Last night, when I cried to the hospice nurse about how difficult it would be to tell her what I wanted to tell her because of her hearing loss, she said, “Write it. Make the font really big and say it on her tablet.” So, as I sat around on Mom duty in the wee early morning hours of yesterday, and I opened up Facebook messenger, and I said what I wanted to say. Too bad she hasn’t picked up her tablet since yesterday, and she probably never will again. That tiny window of time, while I was dragging my feet to get out the door because I didn’t want to face what I had to face, had closed quietly.