What Respite Means to a Caregiver

Posted on

Jan 27, 2016

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Respite Care for the Caregiver
Rhonda Pepper was her mother, Vera Ruth Goodrichs caregiver. She was diagnosed with Frontotemporal Dementia (FTD). This is due to progressive nerve cell loss in the brains frontal lobes; it is the area behind the forehead or just behind the eyes.
Rhonda started noticing some behavior changes in her mother. She started getting up in the middle of the night and getting dressed. She would set the table for the entire family. She was doing things out of nature financially, Rhonda said.
She moved in with us in January of 2009 but we didnt get the diagnosis of Frontotemporal Dementia until May. Finallyeverything we had been experiencingthat just pulled it all together, said Rhonda, with a look that can only be described as bitter sweet. They finally had the answers to the why? but now what? Caregivers are so often put in this role or a position of a role reversal.
Ruth was referred to palliative care and eventually found herself on hospice care. As a full-time caregiver, Rhonda was able to utilize hospices respite program. This allowed me some down-time. I could go sit at the park and read a book; go to my own doctor appointments; attend group meetings for caregivers; it just allowed me to remove myself from the environment and recharge my batteries, said Rhonda about her experience with the respite program.
Rhonda shared the realistic views behind closed doors and what its really like to care for an ailing adult. Its like taking care of an adult infant. Every two hours I would take her to the bathroom; I would shower her; I dressed her; I would change her wet and soiled pants; I would feed her. Rhonda also said she was never fully rested, only sleeping lightly at night because she always had one ear on her mother.
As an educator in the community, to physicians, people are often surprised to learn of the many additional programs hospice offers and how, sometimes one program can collaborate with another. Until or unless someone is in the position of being a caregiver, people dont realize the effects, physically and emotionally, it has on them. The term respite literally translates to a time of rest.

Editors note: This article was written by Gina Paradiso. She is a Liaison with Arkansas Valley Hospice, Inc. and may be reached at 719-384-8827 or by email at gina.paradiso@arkvalleyhospice.org

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