- Associated Press - Monday, May 16, 2016

CALHOUN, La. (AP) - Priscilla Ann Purdy diced Granny Smith apples for a cake into a Pyrex measuring cup on her lap. She sat on the leather couch in the living room. Marie Howard, her 88-year-old mother, slept in a hospital bed a few feet away.

Howard taught Purdy how to cook. It’s a task her daughter loves, though she has done it less often since her mother moved into her home in Calhoun in February.

Howard is bed-bound with vascular dementia and congestive heart failure. She was admitted to Hospice of Caring Hearts last March. Before February, she lived at her oldest daughter Betty Lynn Quarles’ home just up the road. Purdy and Quarles tend to the bulk of Howard’s daily care, with help from their two siblings, Purdy’s husband, a Hospice home health aide named Latoya Mamon and a registered nurse named Connie Kennedy.

Purdy wiped sweat from under her eyes. The heat was on because Howard is often cold. It’s Wednesday, April 6. Mamon visits to bathe Howard every Monday, Wednesday and Friday. The room needs to be warm for her bath.

Purdy washed the dishes while she waited for Mamon to arrive. From the kitchen, she can hear whether Howard needs something. She spends most of her time in the living room, sitting on the leather couch she calls her office. She doesn’t like to be away from her mother because she doesn’t want her to feel alone.

“I’m scared to be outside. I’m scared something’s going to happen to Mama,” she said.

Quarles drops in every morning around 10 a.m. to check on Howard and help Purdy change her diaper. It is physically challenging to care for a terminally ill patient. The sisters can reposition her alone, but it is easier for them to work together to move or change her.

When Purdy needs to take a break for a few hours or a weekend to go watch her granddaughter’s West Ouachita High School softball team play, Quarles or another family member steps up to care for Howard.

“This family is team players,” Kennedy said. “They pitch in and they help and they talk. One person can’t do it all on their own 24/7, and they know that. This family has been wonderful about helping each other out, giving each other a break.”

Kennedy talks the whole time. She asks Purdy how it’s going, what changes in her mother’s condition she has noticed. She chats with Howard, even though the conversation may be incoherent. Kennedy visits every Monday and Thursday. She checks Howard’s vitals and examines her skin for signs of pressure ulcers or redness. Every Monday, she measures Howard’s medications for the week. She makes sure the family has enough cans of Ensure, the nutritional shake that is Howard’s main source of protein.

“You watching Priscilla?” Kennedy asks. “You keeping an eye on Priscilla?”

Howard keeps her eyes on her daughter throughout the exam.

Talking to her patients helps Kennedy connect with them. It helps her build a trusting relationship with the patient and the patient’s family.

“We become one of the family, and we’re friends. We love them. We love the patient. We love (the family), too. We love their dogs and their cats. I do,” Kennedy said.

Purdy said that Howard does not complain. She has to pull information about how Howard feels out of her. Kennedy said that Howard told her she wants her kids to be all right.

Part of it is her dementia - most dementia patients cannot express pain on the zero to 10 scale doctors and nurses normally use. Instead, Kennedy assesses her according to the FLACC scale, which stands for Face, Legs, Activity, Cry, Consolability, to determine if she is in pain.

Part of it is that she’s tough. Howard did not know how to drive a car when she married at age 19. She spent much of her life taking care of children. But she got her GED, then a job working in a school cafeteria. Purdy spoke of her with admiration. She said she takes after her mother with her love of cooking, involvement at church and helping other people.

Dementia is not one disease, according to the Mayo Clinic. Rather, it is a collection of symptoms that causes memory loss, inhibits a person’s ability to think and interact. It can prevent a person from being able to take care of themselves. There are several forms of dementia. Alzheimer’s is the most common. Vascular dementia, like Howard has, is caused by a stroke.

It’s easier to go along with what Howard says when she talks to her caregivers, Quarles said. If they try to correct her when she gets information wrong, she gets upset. She thinks there are still children living in the home. Purdy’s children are grown, with children of their own. Usually, the sisters tell her that the kids are not home yet.

They try to make her understand important things. After her stroke a few years ago, she thought their father and her mother were still alive.

“It was just like his death all over again,” Purdy said.

“Some things you have to make her understand,” Quarles said.

Dana Jenkins, executive director of Hospice of Caring Hearts-Compassus for the Ruston, Monroe and Mangham offices, said there are layers to the grief that comes with caring for a dementia patient.

“They’ve lost who they know as mom,” Jenkins said. “They’re having to get to a new normal, and each time she declines they’re having to go through the grief process again.”

In addition to grieving the loss of the person a patient was before dementia, family members may experience anticipatory grief. Then, when the patient dies, the family grieves the patient’s death. Caregivers often second-guess themselves, worrying whether they provided the right care and made the right decisions for the patient.

The hospice care team - home health aides, nurses, chaplains and social workers - helps families deal with the emotional difficulty of caring for a terminally ill patient.

Family support is vital, too. Howard’s family is close-knit. Howard lived in a trailer between Quarles and Purdy’s homes until her health problems made it too hard for her to live on her own. She split her time between her daughters’ homes.

Quarles is an outdoor person. She found being Howard’s primary caregiver confining. She couldn’t run errands or take trips without arranging for someone else to be there. She became depressed.

When Kennedy started nursing Howard, the patient told her, “I just don’t want to go back to that hospital ever again.”

Her family told her she would not have to. Kennedy, Mamon and all the other care she needed would come to her.

“Really? Oh good!” Kennedy remembered her saying.

Hospice has helped prepare her family for any emergencies that may arise. They monitor her condition for any changes that may signal a decline in her health. The goal is to make her comfortable.

Howard spent most of her life taking care of her family.

“It’s just been instilled in us to take care of your family,” Purdy said. “There is no other way to do it. Just give them back what they have given.”

___

Information from: The News-Star, https://www.thenewsstar.com


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