My mom is the full-time caregiver for my dad, who’s had Parkinson’s for the past 12 years. Parkinson’s is a slow-growing disease that causes uncontrolled shaking, an inability to move and, at the later stages, dementia.
My dad is 170 pounds; my mom weighs 95 pounds. My dad needs to be lifted out of bed, needs help to stand up and requires assistance for the few brief steps he takes with his walker to the bathroom, kitchen or living room.
He needs to be bathed and shaved, and needs help with brushing his teeth. It’s a struggle to dress Dad, as he doesn’t have control of his muscles to help Mom put on his Depends, pants, shirt, socks and sneakers.
Exercise can help Dad sustain what limited range of motion he has, so Mom cues him through his daily exercise routine. She also sings songs with him and has him recite poems and rhymes to combat the voice problems associated with the disease.
Even the good times require work for my mom. My dad loves audiobooks. Mom gets CDs from the library and at home inserts the CDs into the player, positions the headphones on Dad’s head and pushes the play button.
Dad also loves to go out to eat, so Mom loads the wheelchair in the car, positions Dad and the walker to get to the car, loads Dad in, clicks his seat belt and repeats the process in reverse when they get to the restaurant, then she does it all again to get home. Dad also needs help with eating, as his arm freezes on the way to his mouth.
Later in the day she does laundry, cleans the house, cooks dinner, feeds my dad and helps him though an elaborate medication regimen before bedtime.
Mom’s been at this pace for about five years now. Do you think she is burned out, feeling depressed and suffering physically? Of course, but she has accepted the fact that this is her role.
However, a caregiver can only give so much. One research study found that elderly people who felt stressed while taking care of their disabled spouses were 63 percent more likely to die within four years than caregivers who were not feeling stressed.
If my mom’s story sounds like your own, there is help. The Ventura County Area Agency on Aging provides grant money to a few local organizations to provide free caregiver case management services. Senior Concerns is one of those agencies.
The service is geared to family caregivers experiencing burnout, depression, and mental or physical distress due to their caregiving responsibilities.
A care manager provides an assessment to determine the caregiver’s abilities and their physical and psychological health, then helps identify their support and training needs.
After the assessment the caregiver is given information and resources that will allow them to better cope with their responsibilities.
Consultations are provided by phone, in the office of Senior Concerns or in your home. You can schedule an appointment by calling (805) 497-0189 and asking for Lori Bliss.
Unfortunately, services like this do not exist in New Hampshire, where my parents live. However, I hired a local geriatric care manager to conduct a similar assessment, and Mom now has some new resources at her disposal.
One of the resources is Amy, a charge nurse at a local nursing home who works with Parkinson’s patients. Amy volunteers one day a week for a few hours to give my mom some respite time. Amy is a blessing. Her presence allows my mom the one bit of “me” time that she can count on each week to go enjoy a cup of coffee, visit the garden store or take a trip to the mall with my sister.
Family caregiving can be a thankless but praiseworthy endeavor. There are resources to help.
Caregivers, please change the focus to you today. All it takes is a phone call.