When my daughter and I started caring for my mom, Margaret, in 2009, I didn’t have a care coordination provider. It was difficult for both of us because I was working and she was in college.
There may have been something called “care coordination,” but at that time, many of the care coordination services were new or in early stages of development. I did have lists of
caregiving services and phone numbers for my mom, as well as financial statements and housing options, but it wasn’t enough. I wasn’t alone though, 72 percent of caregivers provide care for a parent or family member—often with little to no guidance.
To have had an objective source helping me during this time would have been a blessing. 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 had also lived in senior housing for a time, but didn’t enjoy it. She also didn’t want to live in a nursing home and told me as such many times.
My mother was a businesswoman. She wanted control her own life and 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 glad to be helping her granddaughter and have a 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, and we used web-based services to send her vitals from her home to a physician. Before long, 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.
Advantages of Care Coordination
Full disclosure: I am the President and CEO of InnovAge based in Denver, Colorado, which provides health services, including care coordination, to older adults. It’s mine and InnovAge’s goal to deliver these services to older adults to improve their health and maintain their independence.
My challenge was taking a fragmented health care system and organizing it into something cohesive. 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.
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 come to them. 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.
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.
Being the Primary Caregiver is Difficult
Like many others in the U.S., I was still working when I cared for my mother. More than one in six caregivers work part- or full-time while spending at least 15 hours a week as a caregiver to a family member.
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.
The final years of life can be either joyous or distressing for an older adult and their caregivers and families. Our job is to ensure that older adults are able to live the final years of their lives in the former. Providers of care coordination must maximize the positive aspects of the journey. We manage the journey so older adults can live their lives to the fullest on their terms.
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