Caregiver: Alzheimer’s has taken my mom piece by piece

Caregiver: Alzheimer’s has taken my mom piece by piece

Denise Lafaiver, center, shared her story of caring for her mother with dementia and Alzheimer’s, Marie Dionne. She said she gets by with help from her family including her daughter and grandchildren.

SMITHFIELD – Denise Lafaiver said Alzheimer’s disease has taken her mother from her “piece by piece” over five years since her mom, Marie Dionne, moved into her Smithfield home.

She said first it was little forgotten things, then names, people, her freedom to live alone or cook dinner, and eventually her ability to move alone.

What’s left of her mother is a shell of who she once was.

“I only have the shell of her body. She doesn’t know who I am. She doesn’t know she has kids. I lost her in pieces. I’ve lost the person who is my mother. I have the shell,” Lafaiver said.

“It drains all the rest of the body. I lost her when she lost her memory. Then another piece of her. And another piece. The disease is devastating,” she said.

Lafaiver, who works in human resources at a law firm, is one of the thousands of children of Alzheimer’s parents who have become caregivers to their loved ones. This November is National Family Caregivers Month to celebrate and recognize the family members and friends who provide care to those family members.

Lafaiver made a promise to her mother that she would not put her in a nursing home, and would care from her at home. That time came in December 2014 when her mother moved in to lower her household expenses.

Dionne is one of five children. Her two sisters also had Alzheimer’s, and she watched both die from the disease.

“Within six months, the decline was there,” Lafaiver said of the symptoms that gradually became more noticeable.

At first, Lafaiver said she sent her mother to spend days at the senior center, then adult daycare. Then her needs increased.

Care has become harder over the past 18 months. Her husband, daughter, friends, and grandchildren all help with her mother’s care.

She and husband Elliott attend conferences for caregivers through the Alzheimer’s Association to learn new techniques and avenues for help. Each time, she and her husband learned something new about how to care for her mom.

Lafaiver got a case manager with Tri-County Community Action who helps her in finding services.

“It’s not going to come to you. You have to seek it out and apply,” she said.

Between the conferences and instructions from the CNAs, Lafaiver said she’s learned how to care for her mom, whether it be changing diapers to moving her in ways that will not hurt either of them.

“You know, and I say it all the time, people don’t get it until they live it,” she said.

From vacations or shopping trips to work obligations, Lafaiver said everything needs to be planned to ensure her mother has care while she is away from her. Most days, her husband stays home and cares for her. Other times, Lafaiver hires a babysitter or schedules a hospice nurse.

“I can’t just up and say I’m going out tonight. I have to stop and plan ahead,” she said.

Lafaiver said it’s essential that she gets an occasional break, and she schedules monthly date nights with her husband. She said being able to rely on family and friends helps her a great deal.

Caregiving is not for everyone, she said, and she understands that some people need to be put in a nursing home.

“Everyone has their own reason why they keep them or not,” she said.

Some days, she said, caregiving takes a lot out of her. Some days, she needs a hug. She said some situations are so hard to cope with that she just laughs when she would normally cry. She’s taking it one day at a time, “because that’s all we can do.”

“Every once and a while, she’ll look at me and say thank you. That’s just enough to get me through another week or two,” she said.

Donna McGowan, executive director of the Alzheimer’s Association Rhode Island Chapter, said the association in November recognizes the more than 16 million people in the U.S. who are providing unpaid care to someone living with Alzheimer’s or dementia.

“Caring for someone with Alzheimer’s or other dementias is exceptionally demanding, and it is important that we shed light on this situation so other family members or close friends realize how important it is to step in,” she said. “Even small gestures, such as running errands or spending some time to relieve the caregiver so they can do something for themselves makes a big difference.”

The Rhode Island Chapter offers ongoing support groups for caregivers at locations throughout the state as well as a 24-hour helpline.

“It’s such a challenging role, but people should realize that they don’t have to do it alone,” said McGowan.