Why I Became a Care Coordinator for My Mom
This woman's experience led her to help others in a similar predicament
I didn’t have a care coordination provider in 2009 when my daughter and I started caring for my mom, Margaret. It was difficult. I was working; my daughter was in college.
There may have been something called “care coordination,” but at that time, many of the care coordination services were in early stages of development or new. I did have lists of caregiving services and phone numbers for my mom, as well as financial statements and housing options.
My challenge was taking a fragmented health care system and organizing it into something cohesive to serve her. Known as care coordination, this process is usually tackled by a team of health care professionals working together and sharing information to provide the best care possible at the appropriate time to, in this case, an older adult.
The team then monitors and reports to the family on all aspects of the loved one’s care, including medical and physical condition and outside activities.
Advantages of Care Coordination
Care coordination frequently reduces cost through better, more efficient use of health care services. It also improves quality of life for families and older adults. Care coordination is a good choice for older adults who want to age in place, because services are brought in to the patient. In addition, receiving these services at home is less expensive than living in a nursing home, costing approximately $1,000, compared with more than $5,000 a month at a nursing home.
In my mother’s case, I was her care coordinator. I learned as I went. I made mistakes. I got better. I was like most caregivers in the United States: a full 72 percent of us provide care for a parent or family member.
Full disclosure: I am President and CEO of InnovAge, which provides health services, including care coordination, to older adults and is based in Denver, Colo. It’s InnovAge’s goal, and mine as well, due in no small part to my personal experience, to deliver these services to older adults to improve their health.
To have had an objective source helping me would have been huge. Without one, I went through many options with my mother until we finally found a way to fit her desires and situation.
I considered adult day services for my mother, but she wasn’t interested. She lived in senior housing for a time, but didn’t enjoy it. My mother also didn’t want to live in a nursing home and told me many times.
Retaining Her Independence
My mother was a businesswoman. She wanted control; to live on her own in her own home. And that’s what she did. She moved in with my daughter and lived across the street from me. She had the independence of her own home and was helping her granddaughter. She had purpose.
While my mother had her independence, I remained tethered to her as a care coordinator. I found a nurse practitioner and physician who would monitor her health and well-being monthly. We used web-based services to send her vitals from her home to a physician. Then I added home care. I put together a list of everything and everyone who could potentially come to the house to provide services, like hair and foot care.
My daughter and I cooked meals and took turns going to doctor appointments to take notes. We surrounded my mother with all the components we were going to need. Somehow we pieced it together. I learned from this experience that every situation and person is different. Each has his or her desires and needs for living and enjoying life.
I was still working, of course, when I cared for my mother — like many others in the U.S. More than one in six caregivers work part- or full-time while spending at least 15 hours a week as a caregiver.
In addition to the time and stress of being a working caregiver, there are many career and monetary difficulties. The following statistics from the AARP Public Policy Institute, the National Alliance for Caregiving and MetLife show the impact on the economy and the workforce of family caregivers.
Among working caregivers:
- 69 percent have rearranged work schedules, decreased hours or taken unpaid leave
- 5 percent turned down a promotion
- 4 percent took early retirement
- 6 percent gave up working altogether
- 37 percent quit jobs completely or reduced work hours to care for someone 50 years old or older
While I, like others, grappled with career issues, my mother’s health continued to ebb. Finally, as she became more and more frail, I brought in hospice care.
Change the Story
Organizations that provide care coordination have the ability to wrap services and health care around older adults and their families. The mission: help older adults remain in control and continue to have purpose as they age.
Care plans must be built and action taken using medical, psychosocial, therapeutic and nutritional data to give older adults and their families one very important thing: control.
We all know the final years of life can be something joyous or extremely distressing for the older adult and their caregivers and families. Our job is to ensure older adults live the final years of their lives in something resembling the former. Providers of care coordination must maximize the positive aspects of the journey. We manage the journey so older adults live life to the fullest on their terms.