Caregiving is a multifaceted journey filled with emotional, mental, and physical demands. Many caregivers face the dual burden of providing care while managing their well-being, often without adequate community support or understanding. Ashley Lee, a caregiver for over 14 years to her father, a Vietnam veteran living with ALS, shares her insights into the challenges caregivers face and the ways communities and technology can better support them.
Most caregivers are overwhelmed, undereducated, and uninformed. Additional challenges present themselves depending on the connection between the patient and caregiver, spouse, adult child, parent, etc.. Support needs vary from person to person and in different situations. The largest gap is that communities could find a way to provide support for would-be ways to help caregivers who do not have family, neighbors, and friends to assist in any way. Many caregivers will say they do not know how to respond to everyone asking how they can help. Still, some people have no one offering to help or even calling or coming over to visit and provide social/emotional support.
One misconception I would highlight is that burnout is only sometimes a problem for the caregiver. Caring for a loved one can be viewed as an honor and privilege. However, there are likely other issues they are dealing with that need to be addressed.
Another misconception is that caregiving is not “work,” and the caregiver can find a way to maintain employment. There are some situations when that is true, but others require round-the-clock care and attention and do not permit time and the ability for the caregiver to hold an additional job.
There is no one-size-fits-all solution or type of support. Providing a variety of options is the most beneficial. Resources and support, such as learning new coping mechanisms, providing respite care, encouraging self-care, joining a support group, and speaking with a mental health professional, are some examples that may be helpful.
– Ashley Lee
Technology can be a great support to caregivers.
Telehealth for counseling and medication management can incredibly benefit caregivers. Cameras with audio and microphones can also be helpful tools. Environmental controls with features such as reminders, automated ordering, etc., can assist with ordinary day-to-day tasks and lighten the load for a caregiver.
I strive to make a difference in whatever way I can, whether small or large. I hope I can make a difference in the caregiving experience for individuals and their families. My lived experience gives me an extra focus on shedding light on the different needs of adult children caregivers. They have very different caregiving journeys than a spouse or other relationships that are often unknown or overlooked because they are a smaller population.
Ashley Lee’s insights shine a spotlight on the pressing challenges caregivers face and the unique journeys they undertake. Her advocacy is a powerful reminder of the importance of community support, technology, and awareness in easing caregiving burdens. By strengthening the voices of caregivers, particularly adult children caregivers, Ashley aims to inspire meaningful change and ensure no caregiver feels unsupported or overlooked.
Ashley Lee is a dedicated caregiver advocate with over 14 years of experience caring for her father, a USAF Vietnam veteran living with ALS. Now a psychology Ph.D. student, Ashley is committed to leveraging her knowledge and experience to support caregivers and create meaningful change. Her work spans healthcare, military/veteran support, and non-profit sectors, focusing on improving resources, research, and advocacy for caregivers.
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