If there was an award for being least prepared to care for a loved one at the end of life, we would certainly have been finalists for it. Caregiving was neither a subject that was taught in school nor something we really thought about. Moreover, Leo and Norma never really wanted to talk about it.
So we ended up improvising.
With hindsight being 20/20, we subsequently learned that there was a lot we could have done to prepare ourselves for the role of caregivers.
We caught up with AARP’s caregiving expert, Amy Goyer, and learned that there is more support available out there than we ever knew.
Amy, could you tell us a little about your experience in caregiving?
I have been caring for family members my entire adult life – starting at the ripe old age of 21! I have cared for my grandparents, my sisters and my parents. For each one, my role has varied. At the same time I received my degree in Music Therapy and began more than 35 years of working in the field of aging, first in adult day care centers and then at the Ohio Department of Aging and AARP.
We recently learned of AARP’s “Prepare to Care” guide and wish we had known about it before we started caring for Norma. How do you think that tools like this guide help caregivers take care of their loved ones?
Most people are thrown into caregiving due to a crisis or the escalation of a chronic problem without preparation. But when we are in a crisis, it’s the worst time to be making decisions and to try to piece together our loved ones wishes and resources. And most caregivers are at a loss as to where to find help when caregiving. Taking a little time to plan ahead of caregiving can make it much easier.
AARP’s Prepare to Care guide outlines five steps you can take to be better prepared when you need to care for loved ones, and you can re-visit these steps over and over again to adjust plans as their needs change (so even if you’re in the middle of caregiving, this guide is a great resource). It’s a basic framework on which you can build support throughout the ups and downs of caregiving.
We found ourselves getting lost in our world of caregiving at times. We would have to remind each other to get outside, take a breath and rejuvenate ourselves. How do you think that the “Prepare to Care” guide helps caregivers take care of themselves?
The last step in the guide is “Care for Yourself”. The guide provides some suggestions and reasons why it’s important for caregivers to realize the importance of conscious self-care while caregiving. In my experience, while we know it’s important for us to care for ourselves, we tend to put it off, or we are constantly in a new crisis and don’t have time, or we deal with everyone else’s needs first. But then we eventually crash. So it helps to have reminders so we actively plan for, schedule and value time for self-care. It’s not selfish; it’s just practical – we can’t keep running on an empty tank so we have to fill our own tanks too!
While living and caring for Norma in a motor home, we were fortunate to have support through our online community. The encouraging words of strangers kept us going, especially during the hardest times. Can you tell us about the importance of finding a community for caregivers?
Being a family caregiver can be extremely isolating. Caregivers don’t have time for their hobbies, socializing and other activities. Many friends fall by the wayside because they just don’t understand what we are going through. It helps to be in contact with other caregivers who have had similar experiences. Caregivers get support, identify with each other and also learn the most from each other, so connecting with other caregivers can be very helpful in problem-solving and navigating caregiving. For some caregivers, an in-person support group works well; for others, connecting with other caregivers online fits their schedule and needs better. AARP has an active Online Community caregiving forum where people can post questions or comments. I’m also there frequently as well as other experts.
Are there any other resources or tools offered by AARP that you find to be particularly effective for helping caregivers?
Absolutely! In addition to Prepare to Care and the Online Community Caregiving forum, AARP has developed a number of key practical and easily accessible resources to support family caregivers.
The AARP Family Caregiving website offers tips, videos, care guides and so much great information specifically for family caregivers about important topics, from the basics of caregiving to local resources and solution.
Caregivers can call the AARP Caregiving Support line toll-free at 1-877-333-5885 Monday through Friday, 7am to 11pm Eastern Time to speak with an agent who can help navigate to local resources, send a free print copy of Prepare to Care, and help caregivers connect with AARP and other local resources.
AARP also has a number of great caregiving books, including my book, Juggling Life, Work and Caregiving. It offers very practical tips and resources about all of your caregiving challenges, from assessing the situation to creating a caregiving plan, building and managing your caregiving team, health, legal and financial matters, caring at home or in a facility, end of life care and I also include a chapter on life after caregiving. You can find my book and other AARP caregiving books on the AARP website.
AARP TEK has fantastic online caregiving webinars and videos about a wide variety of caregiving topics at https://aarptek.aarp.org/caregiving
As a member of the Home Alone Alliance, AARP has created a number of videos demonstrating how to do medical/nursing caregiving tasks, such as walking with a walker, wound care, medication management and what to do if your loved one falls.
We have examined these wonderful resources and are confident that each one has something that will resonate with people regardless of where they are on the caregiving spectrum.
Our gratitude goes out to all of those caring for their loved ones, and to Amy and AARP for trying to make it a better experience for everyone involved.
Amy Goyer, AARP’s Family and Caregiving expert and author of "Juggling Life, Work, and Caregiving” is a nationally known authority on aging and families, specializing in family caregiving, grandparenting and multigenerational issues. She most recently cared for her Dad, Robert, in her home. He was 92 and had Alzheimer's disease. Follow Amy's blog and videos and connect with Amy on Twitter @amygoyer, Facebook and LinkedIn.
Tim Bauerschmidt and Ramie Liddle are inaugural Caregiver Fellows for the Coalition to Transform Advanced Care (C-TAC) and are co-authors of Driving Miss Norma: An Inspirational Story About What Really Matters at the End of Life, (2017) HarperOne. Learn more at MissNorma.com and on Facebook.