Alexa never imagined at 46 years old what her life would be as a full-time caregiver. Her mother, having lived independently for years and still working well into her 80’s, began showing signs of uncharacteristic behavior like confusion, agitation, and decreased physical stability. It wasn’t long before Alexa knew she needed to intervene. After several doctor visits and tests, she heard the words she long suspected but dreaded — her mother had dementia.
Alexa worked from home, so she was able to attend to increasing phone calls, doctor visits, and calls to insurance companies. But she had to all but abandon her career to take care of her mother who now had moved in with her. Alexa loved her mother and wanted the best care for her, but the tole it was taking on her as a caregiver was mounting before her eyes.
Her mother had limited mobility due to breathing restrictions and had become increasingly confused. “I’m afraid to leave her alone even for an hour or two and we can’t afford full-time home health care,” Alexa said. “So, I stay and take care of her because there’s no one else that can – and we can’t afford to put her someplace she’d be safe and watched over, so it’s just me.”
As the level of caregiving needed for her mom began to rapidly increase, Alexa began to notice that she’d been feeling more and more isolated herself. “I’m afraid that I don’t have much in common with my friends anymore as I don’t go out and socialize as much as I used to.“
“I went to my high school reunion last year and felt good about going. I found a friend of the family who was familiar with the situation who helped by coming and staying with Mom after I had left. So I thought I could grab a few hours to meet with old friends and enjoy some good memories,” said Alexa.
But, an hour after she left, Alexa got the first in a series of texts and finally a phone call about her mother’s increased agitation. The family friend was afraid that she couldn’t handle her anymore and didn’t know what to do. So Alexa went home worried, anxious, fearful – and increasingly lonely.
Feelings of isolation and loneliness can be caused by a withdrawal from previous habits and lifestyle. While friends continue on with their daily routines, some caregivers are left to feel alone in their caregiving duties. Likewise, caregivers without support from others in similar situations may feel as though no one really understands what they’re going through. This can lead to a withdrawal from social activities and relationships
“Caregiving is done with a lot of love and affection, but there’s also a lot of loss involved,” said Carey Wexler Sherman, a gerontologist at the University of Michigan Institute for Social Research. “People talk about friends disappearing, about even family members not wanting to be involved. It’s a lonely business.”
Statistics reveal that between 40 and 70 percent of family caregivers experience clinical symptoms of depression, and can also experience unexpected physical side effects caused by the onset of depression – things like weight gain due to emotional eating, increased blood pressure caused by stress, heart disease, and even stroke. Not every caregiver will experience this level of physical side effects, but even the slightest feeling of being alone in your role can have a significant impact on your overall well-being. One of the best ways to help combat the increased feelings of isolation is to find a support group or online forum that you have common ground with which can help give you a sense of community.
Mary Mittelman, at NYU Langone Health, is the director of the Alzheimer’s Disease and Related Dementias Family Support Program that provides several counseling sessions, followed by support groups and phone access to counselors as needed. With federal and state grants, the program has inspired others which have been adopted throughout New York and in several other states. The National Association of Area Agencies on Aging website can help caregivers find free local programs as well. Program developers are also testing online versions, for those who find getting out of the house difficult.
“The support is what leads to less stress, less depression, better health and delayed nursing-home admissions,” Dr. Mittelman said. Interestingly, her team has found that “instrumental support,” in which others actually help with tasks, has less impact than emotional support. “Having someone outside who is paying attention and who cares is more important,” she said.
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