Why hospice in a long-term care facility? One daughter’s story.

May 1, 2017 8:00 am

Hospice patients can live in many different locations when they receive care. They may live alone, with a caregiver, in a nursing facility, hospital or assisted-living community. Regardless of where the patient calls “home,” it is a good idea to discuss all of a patient’s care options and, often, one doesn’t have to exclude another.

Natalie Twyman, Census Development Director for American Healthcare, LLC, says that sometimes there is a stigma around both hospice and palliative care. “Having hospice involved on a nursing facility level can be very beneficial to the resident, the families and the facility,” Natalie said. “Families grasp onto extra support during this difficult time. The hospice social workers help with the grieving and bereavement process. They are also able to help with the difficult end of life discussions.”

Stephanie Gillenwater’s mother lived at home when they first chose to work with hospice. “My mother’s illness came on rapidly,” she said. “One summer she was mowing the lawn and by the next summer she could not walk.”

“Mom’s diagnosis was a bit of a guess because she didn’t exhibit the classic symptoms of Parkinson’s. She did not have tremors, but more muscle weakness. She was eventually diagnosed with Parkinson’s with Lewy Body dementia,” Stephanie explained.

“Shortly after Mom moved in with me, a friend of mine with Good Sam, talked with me about hospice care.” Stephanie shared that her previous knowledge of hospice care was that it was simply the “6-months-to-live option,” but her experience turned out to be much more than that.

“During the time that she lived with me, Mom quickly went from walking with a walker, to not being able to hold her own weight, to finally not being able to speak,” Stephanie said. When her mother started struggling with swallowing, they made the decision to move her into long term care because of a fear of choking.

“I never even thought about not having hospice continue when she moved into long term care,” Stephanie said. “At that point, the hospice team was like my right hand.”

“Mom had gotten really used to the aide who was bathing and helping her,” Stephanie continued. “Because she couldn’t speak, she was very confused and you could see that fear in her eyes. When she moved into long term care, she had the familiarity of the hospice team that had been there all along.”

Natalie Tywman noted that hospice nurses and physicians are able to focus on symptom and pain management for the resident, which allows the facility staff to have more time with the family to answer questions.

“Nursing facilities are partnering more and more with hospice companies to educate families and residents on the benefits of having hospice involved,” said Natalie. “Symptom and pain management are just as important with end stage diagnoses then just comfort measures. We all want the same for residents who have hospice on board and that is for them to be pain free and comfortable.”

A hospice team will work with the patient, their families and the long term care facility staff to develop the best plan of care for each individual. For Stephanie, this transition of care was a great comfort to her.

“I had the comfort of knowing the person who was bathing Mom three times a week,” Stephanie said. “The nurse and the social worker were all the same. Even though mom could not communicate with them, they were familiar faces to her.”

Hospice’s focus on helping the families can be incredibly helpful during this time.

For Stephanie, the hospice team served as extended family to help care for her mom. “Initially, I took a leave of absence from work to care for my mom,” she said. “There was a fear of leaving my mom in someone else’s care, and not being with her 24/7.” Stephanie noted that the hospice team was a great help to her in ensuring continuity of care as she transitioned back to work.

“I did not want my mom medicated,” Stephanie continued. “Our hospice nurse helped with medication decisions in her long term care facility, and that was reassuring.”

Stephanie’s mother passed about a month after entering long-term care. “I’m not sure I would have survived that period of my life without Good Sam Hospice,” she said. “They answered my questions, held my hand and helped me through. I tell everyone, they are wonderful.”





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