Help & Hospice

HIn the beginning — for although we had reached the end of Emma’s life, it was a new beginning for us both — I based my decision to stay in Delaware partly because my brother lived nearby and said he would help. This was in 2001. But, he became involved caring for his mother-in-law, who lived with him and his wife. And, later, he retired and moved to North Carolina. So, it was just me.

In the 1950s, my Nana, Emma’s mother, suffered an incapacitating stroke. Emma put Nana in a nursing home. At the end of a visit one day, we said goodbye to Nana, and as we walked away, she called, “Don’t leave me.  Don’t leave me! Oh, please don’t leave me,” and she cried. This memory springs into the spotlight of my mind, recurrently, upstaging others of my thoughts, as if it happened yesterday. Having heard horror stories of nursing homes, I could not, in good conscience, stash Emma in a nursing home and walk away. What if it were me?

So, on the urging of a friend,  I began seeking in-home help. Finding someone took endless months. Agencies didn’t return my calls. We needed to qualify for Medicaid, since Emma had spent all her money, thinking she would die at 72 as her mother had. But Emma was already 92. Finally, in 2008, we qualified and I got Respite Care five hours a week. That was something. The aide could come in and bathe and feed Emma.

For more than a year I tried to get Attendant Care Services, funded by the state through a Medicaid grant. We were put on a list and had to wait until someone died. We were number 16. Then, in August 2012, the state reallocated those funds and we got the service — 30 hours a week. That’s when our wonderful aide Daphne arrived on the scene.

Earlier, in 2009, we had finally qualified for hospice, so we had a hospice healthcare aide a few hours a week in addition to the Respite Care aide; they alternated weekdays. Weekends I was on my own. But, if an emergency arose, I could call hospice and a nurse would come. Emergencies only arose in the middle of the night, naturally, and that’s when I met Nurse Marge.

“How can you be so bright and cheery at this hour?” I asked her. “Oh, hon,” she said, “I’ve been working nights for years.” So, she proceeded to show me how to turn Emma in bed and change her clothes and her bedding. It was 3 a.m. I got the  picture and walked away. “You’re not done yet,” said Nurse Marge. Oh. I couldn’t escape. She helped me do the whole thing. Nonetheless, I never did succeed in being able to turn Emma in bed and change her clothes. I’d get her clothes and the bedclothes all bunched up around her shoulders.

Nighttime emergencies were many, Nurse Marge would come, even if we had to wait an hour or so: “I just had to pronounce someone,” she’d say on those occasions.

At Emma’s funeral in April 2012, one of the things that deeply touched me was Nurse Marge’s showing up at the cemetery. “But, it’s daytime,” I said. “When will you sleep?” “Oh, it’s my day off,” she said.

Samantha Mozart

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