It is a quiet Sunday afternoon at Antonina’s house in South Boston. The 83-year-old sits patiently at her kitchen table as a home health aide paints her finger nails rustic red. In May, Antonia’s daughter, Maria, moved back into this house to help care for her mother. Her mom suffers from a degenerative disease called Lewy body dementia. Boxes and papers are scattered in parts of the house and Maria says the move hasn’t been easy.
“It has been quite a challenge, because my husband and I moved all of our things into this home, but it still contained all of the items and furniture and objects that my parents had accumulated over the years, and there are a lot of memories attached to all of that, of course,” Maria said. “It’s hard to give up certain things because you just remember the last time you used them was when you were celebrating a happy occasion.”
There haven’t been too many happy occasions in this home in recent years. Maria is holding onto things that help her remember happier times. She points to a large signing board with special messages for her parents’ 50th wedding anniversary. That was eight years ago, and just weeks after the anniversary, Maria’s father had to undergo emergency surgery. His health rapidly declined and dementia set in. Maria and her brother did their best to provide care for him at home, but eventually it just became too much to bear.
“He would wake up every night kind of like screaming,” she said. “He would become scared and a little aggressive and combative and yelling at people and even trying to hit, so it just became impossible to keep him at home any longer.”
Maria placed her father in a nursing home about a year ago, and now she says she’s trying to do everything she can to keep her mother at home.
“I couldn’t imagine her being elsewhere than at home, and it really isn’t easy to take care of someone,” Maria said. “I mean on the flip side, I think of how she took care of me all of those years, and now it’s time for me to do the same for her, and she deserves it, because she was a great mom.”
Home health aides help Maria’s mom while she is at work. Once a month, she attends a support group in Jamaica Plain for families struggling with Lewy body dementia, but the 43-year-old says the strain of having both of her parents sick at the same time has taken its toll.
“I’ve been diagnosed with rheumatoid arthritis, and I’ve taken meds for it,” she said. “I’m in remission, but you just sort of notice that all sorts of immune issues come up, autoimmune issues, and it’s directly related to the stress, I’m sure of that.”
Dr. Sharon Levine, a geriatrician at Boston Medical Center and a professor at Boston University School of Medicine, doesn’t know Maria, but she says she’s met plenty of stressed out family caregivers while visiting elderly patients.
“Depression is very common in caregivers," Levine said. "You know, you give at the office, you give at home, you give to your spouse or partner, you give to your kids, you give to your community, often before you give to yourself. I think it’s very important for caregivers to be able to talk to their own physicians to be able to get mental health help for themselves if they need it.”
Levine says part of her job is giving caregivers “permission” to let go and accept extra help when they need it.
“The important thing is if a caregiver is burning out and can’t take care of him or herself, they’re not very good for the person that they’re taking care of,” Levine said. “When people get burned out, that’s often a time when people are at risk for elder mistreatment or neglect, not because these are bad people, but because they are overwhelmed, especially if they were impaired caregivers to start with.”
Back in South Boston, Maria’s mother is being well cared for, but Maria is considering some changes. The home health aides are proving expensive and she says she’s now looking into adult day care programs. She still hopes to keep her mom at home, but she worries about a day when she won’t be able to cope.
“If it gets to a point where I know that I won’t be able to handle it anymore, I mean if it comes to a point where she’s waking up every single night and I’m becoming sleep deprived, I won’t be able to function, I can’t help her, I can’t help myself,” Maria said.
At this point, she says she’s taking it one day at a time.
- Lewy Body Dementia Association
- Tips for Avoiding Caregiver Burnout
- The Thanks Project
- AARP Caregiving Resource Center