How Caregiving Has Changed Over the Years
My first experience as a family caregiver was caring for my grandparents. I was a long-distance member of Grandmother Clara’s support team. My periodic visits provided a little respite for my aunt, uncle, and cousins who lived near her (my parents lived on the other side of the country, and I only lived three hours away from her). She didn’t drive, so I would take her to the grocery store and church, help with projects around the house and just have fun spending time with her – socialization is an important part of caregiving. She lived alone and remained fairly independent most of her life until she developed bone cancer and passed at age 90.
My dad’s parents, Grandmother Genevieve and Granddaddy C.V. lived 6 ½ hours away from me, and theirs’ was a different situation. Grandmother Genevieve had Alzheimer’s disease. Dad was an only child, so we had no family in the town where they lived. With my parents living so far away, Dad managed finances and paperwork as much as he could from a distance and visited as frequently as possible. My sisters helped as they could. My role was to help set up services, visit, and monitor their home and their care.
I provided socialization, fun, and support for Granddaddy, who was Grandmother’s primary caregiver until he couldn’t manage it anymore. I got home-delivered meals set up for them. My grandfather struggled to deal with my grandmother’s incontinence, so I taught him about adult briefs and incontinence supplies. I did some mending for them, decorated for the holidays, and cooked special meals. I fixed the old Victrola and danced with them in the living room. They were fortunate to have neighbors who shoveled snow for them and called Dad if they noticed any problems.
Eventually, my grandparents went through their life savings to pay for care at home. At that time there was no Medicaid waiver for in-home care in their state, so they had to go to a nursing home. My grandmother died four weeks later at the age of 88 and Granddaddy died at the age of 98, six weeks after she passed. It was heartbreaking, as they had expressly wished to stay in their home. We just couldn’t find a way to do that.
Granddaddy C.V. was a Veteran with many years in the military. But at that time there wasn’t the in-home care, financial, or caregiving support that Veterans Affairs (VA) offers for eligible Veterans now. Thirty years later, when Dad had Alzheimer’s, as a Veteran he received Veterans Aid and Attendance benefits, as well as home-based primary care, medications, medical equipment, ramps, and more. These things would have been incredibly helpful for my grandparents, and likely would have allowed them to remain in their home during their final days.
In the 1980’s we had no technology to help us support their safety and monitor their care from a distance. My grandfather had to be hyper-vigilant to ensure my grandmother didn’t go out and get lost, whereas the door alarms, motion sensors, and other technology available now could have eased the stress. She left the gas stove burner on more than once, and now there are technology devices that would automatically turn it off. We didn’t have mobile phones or video chat back then, so we couldn’t see how my grandparents were really doing unless we were there in person. We could only communicate with them through a ‘landline’ phone.
Caring for my grandparents contrasted with caring for my parents from 2007 to 2018 in so many ways. In addition to Dad’s VA benefits, I used audio monitors and video cameras to keep an eye out for them – whether in the next room or across the country. I had multiple alarms set with motion sensors, doors, floor mats, and bed pads. I could video chat with them and communicate with paid caregivers when I was away on business travel. We used mobile health practitioners who came to the home, as well as mobile health services, such as x-rays, labs, ultrasounds, and swallow tests.
Now, as I help support other family members and friends, there are even more supports available. For those who live alone, we use caregiving systems that include radar fall detection, communication hubs, motion sensors, and medical alert devices. These things would have helped us feel more in touch and supportive of all of my grandparents as they aged.
In the 1980s, family caregivers were largely invisible, and there were very few caregiver-support programs. No one wanted to talk about Alzheimer’s, and the financial struggles of family caregiving were not discussed.
Thankfully, we’ve come a long way since then. Caregiver support programs exist across the country. There are more respite services available to help caregivers take a break. Caregivers have far more ways to connect with other family caregivers via social media and in-person/online support groups. And we can access information, videos, and tools online when it is convenient for us.
Caregiving is both one of the most important and one of the most challenging roles a person can play. But, looking back over the years, we have many more resources, tools, and supports than in the past. I’m grateful that, in general, the role of family caregivers is becoming more recognized and supported.
Amy Goyer is a caregiving expert and author of Juggling Life, Work, and Caregiving. A passionate champion for caregivers, she has also been one her entire adult life, caring for her grandparents, parents, sister, and others. Connect with Amy on Facebook, Twitter, and LinkedIn.