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

13 Responses to Help & Hospice

  1. Hilary says:

    Hi Sam – what a lovely caring story .. end of life is so so difficult. I’m so glad my mother accepted we couldn’t look after her she was bedridden by a stroke, but could talk and had had a care home – so knew what was what. We had a good time … and at least I didn’t need to be there all the time .. but I was a great deal … I admire your courage in helping Emma stay at home – and some nurses are just brilliant aren’t they. Nurse Marge sounds an angel .. so pleased she was there for you both … with thoughts – Hilary

  2. Stacey says:

    What a wonderful nurse! My son spent a month in the NICU and the nurses make a huge difference in how the day can go for a parent. I spoke with other NICU parents who were there for 6 months and they felt the same way.

    • sammozart says:

      Absolutely, Stacey. I cannot say enough good about nurses. They are there the moment you need them, go above and beyond the call of duty, are knowledgeable and compassionate. They will take the time to listen to you and explain what’s going on, what you need to do in the care of your loved one. Our regular hospice nurse, Tess, remains a good friend three years later.

      Thanks for coming by and for your lovely comment. I hope your son is doing well now.

  3. Marsha Lackey says:

    To repeat Gwynn, “Your mom was lucky to have you”. What a blessing you are!! Help is so important and it’s so hard to literally fight for. My wish for all caregivers is the ability to secure assistance from the state/US. We’ve paid our taxes and the family members have as well. By the time it arrives we are so burned out that we never really get a break, even then. Great expression of your experience.

    • sammozart says:

      Absolutely, Marsha. Getting the help we need when we need it is a point I am trying to highlight in these Caregiving posts.

      So, now, help comes so late that we caregivers don’t get a break until after the person passes on, and then it’s really too late; nevertheless, we must cope.

      Thank you for saying this.

  4. Gwynn Rogers says:

    Your mom was blessed to have you. I too remember the cries from people in nursing homes as their family or friends walked away. The nursing homes then were particularly sad. It truly is amazing that you received so little help. Your story is amazing. You were a bright light for your mother. She was lucky to have you.

    • sammozart says:

      Thanks, Gwynn. I could have used you to come by and point that out to my mother sometimes. But, seriously, I’m sure she knew. It was not an easy time for her. I would not wish it on anyone.

  5. Susan Scott says:

    Thank heavens for those helpers Samantha! And bless Nurse Marge! Smiled at her ‘day off’ when she attended your mother’s funeral! Bless Daphne too! Loved what Patricia said about Elizabeth – truly there are special people in the world.

    Thank you for this post.

    • sammozart says:

      Yes, Susan, few have what it takes to be a hospice caregiver. These are the most extraordinary human beings. Daphne, of course, was not hospice, but she could have been.

      Thx,
      Samantha

  6. Pat Garcia says:

    Hi,
    This touched my heart because I too had a wonderful nurse, Elizabeth, from Hospice that helped with my mother. The day before my mother’s funeral, she came by and sat with us because she had to work the next day and couldn’t attend.

    Your mother was blessed to have Nurse Marge, and you were too.

    Shalom,
    Patricia

    • sammozart says:

      Yes, Patricia, and our regular hospice nurse, Tess, who recently and for more than a year underwent chemo for stage 4 breast cancer. She is recovered now, as far as I know. Life deals us some strange cards sometimes. I don’t know what I would have done without Tess.

      Shalom,
      Samantha

  7. Robert Price says:

    S.,

    Love Nurse Marge!

    Great story telling.

    R.

    • sammozart says:

      Yeah, I do, too. She’s a very cool and unique person. Most all of my hospice help are.

      Thx, R.

      S.