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AARP AARP States North Carolina Caregiving

An Endless Love

By Sheila Evans, RN - Carrboro, NC


In 2010 my husband, Dr. Seth Reice, PhD, a professor at UNC, was diagnosed with Mild Cognitive Impairment.  He was having problems with his memory and was losing important things like keys, and getting lost when driving the car.  His disease progressed very quickly and soon he was re-diagnosed with FTD, Frontotemporal Dementia or Deterioration.

Seth was very young, age 63, and we were both frightened.

Sheila and Seth Evans
Dr. Seth Reice and Sheila Evans



Luckily we had had several long discussions over the previous years about what we wanted for ourselves and each other as we aged and if we developed a chronic disease.  This was invaluable for me because as the disease progressed I knew what he wanted and did not want.

I wasn’t ready to retire, but I refused to leave him home alone in the hands of aides he did not know.


We both decided to retire, I from my job as a home health nursing supervisor and he from UNC.

Perhaps the biggest challenge to me was when he became incontinent, and later developed Aphasia which caused him to lose his speech.  He never lost his delight in music and was actually able to sing and remember the words to our favorite songs even though he couldn't tell me what he wanted for dinner.  Music became central in our lives as the loneliness of no conversation was so hard.

Caring for him was not without challenges. He had increased trouble eating but I knew from our talks he did not want a feeding tube or IV's. He also did not want to be hospitalized, even though he did have some falls. To help keep my strength, a couple hours of respite every now and then was so important to me so I could take care of myself.

Hospice was also so helpful for the last 7 months and reinforced our decisions about his care.  And so as his disease progressed I was able, with the help of a wonderful support group and some hired intermittent nursing assistants, to keep him home and comfortable and quite happy until his death at home, in my arms,  in December, 2014.

I felt so thankful and privileged to be able to care for him until the end, respecting his terms and wishes.

Editor's note: Did you know that there are over 1.9 family caregivers in North Carolina? AARP is asking the General Assembly to study the needs of working caregivers so in the future people do not necessarily have to chose between income and caring for a loved one. Helping working caregivers also helps businesses stay more productive. Help us take action to improve the lives of family caregivers.

 

 

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