“The person you’ve lived with and cared for, you’re now caring for them differently. And I consider that an opportunity…”
More than half a century ago, Don and Elvira met while teaching school in a little town in Kansas. They built their life together, moving to Colorado, raising two daughters, and now have two grandchildren. Today, their love story continues in a new way — with Don as Elvira’s family caregiver.
“We discovered she had dementia. I did not know what that was and how this would change our relationship,” Don shares. Today Elvira cannot be alone; so Don is with her 24-7-365. He manages her medications, cooks her meals, drives her to medical appointments, and everything else along the way.
“When you’ve lived with someone for 50-some years, it’s only natural then, what happens to her and with her, I’m a part of that.” —Don
For Don, this new role as caregiver is part of what it means to be married, but the experience can be overwhelming. “I love Elvira very much, and I want to take care of her so she can stay in our home. Still, being a caregiver is challenging, and while I will continue to be there for my wife, in sickness and in health, I could use a little help.”
Fighting for you
That’s why AARP is fighting to make sure family caregivers, like Don, have access to the support they need as they help their spouses, parents and other loved ones live independently at home. Here are some of the ways:
- The Caregiver Advise, Record, Enable — CARE — Act helps family caregivers when their loved ones go into the hospital and as they transition home, requiring hospitals to record the caregiver’s name in the patient’s medical record, notify the caregiver before the patient is discharged, and instruct the caregiver on any medical tasks they will need to perform once their loved one returns home.
- Nursing Scope of Practice and Nurse Delegation cuts through the red tape and allow nurses to have the full authority to heal.
- Respite Care allows family caregivers to take a hard-earned break.
- Registry of Home Care Workers allows family caregivers access to trained and screened private-pay workers who can help provide care in the home.
- Workplace Flexibility helps family caregivers balance responsibilities at home and work.
- Uniform Guardianship helps family caregivers navigate financial challenges by making sure adult guardianship laws are consistent and honored from state to state.
- Power of Attorney helps protect vulnerable adults and provide their family caregivers with the tools they need to make important financial decisions.
- TeleHealth enables family caregivers to take advantage of technologies that will help them in their caregiving role.
- Caregiver Tax Credit gives family caregivers some financial relief when using their own money to care for a loved one.
- Care at Home and in the Community significantly increases — or protects against significant decreases in — the number of older adults who have access to state-funded services at home and in the community, like home care and adult day care.
If you’re a family caregiver, you’re not alone.
- To stay up to date or to get involved with AARP’s caregiving advocacy in the states, sign up for the AARP Advocates e-newsletter or visit your state Web page.
- For tools and resources, visit aarp.org/caregiving.
- To share your story and connect with others, visit aarp.org/iheartcaregivers.
- To find out how AARP is fighting for you, check out aarp.org/SupportCaregivers.
Elaine Ryan is the vice president of state advocacy and strategy integration (SASI) for AARP. She leads a team of dedicated legislative staff members who work with AARP state offices to advance advocacy with governors and state legislators, helping people 50-plus attain and maintain their health and financial security. Follow Elaine on Twitter: @RoamTheDomes