I Lived the National Caregiving Trends (Part 1)

I don’t need the American Association of Retired Persons (AARP) to tell me that unpaid caregiving is a tough job in the United States. But it is validating, as well as sad, to realize just how not alone I was in my experience as a caregiver to a metastatic bladder cancer patient.

In May, the AARP released a report, Caregiving in the United States 2020. It is a comprehensive survey of unpaid caregivers in the U.S. The data was gathered via an online survey of nearly 1,400 caregivers.

In Part One, I’ll address the data from the report — and my own experience — regarding providing complex care at home and being a sole caregiver. In Part Two, I’ll address the emotional and financial impacts on caregivers.

More health care is provided at home – for better and worse

The report found that “caregivers increasingly provide and monitor complex care at home...” but “very few [29 percent] report having conversations with [health care professionals] about what they need to care for [the patient].”¹

More than once, I found myself and my first husband sent home from the hospital with directives to perform complex care tasks. For example, he needed a blood thinner shot each day for a week. This was a shot directly in the belly. Never mind I can barely handle the site of a needle.

It is common for healthcare tasks to be outsourced to caregivers

But it is common for hospitals to send patients home with the expectation that the caregiver will perform these kinds of tasks. I don’t think this would have happened in the 1980s. In those days, the patient simply would have remained in the hospital longer.

It may be a positive that patient stays are shorter, but I have heard frustration from other caregivers about the complexity of tasks they are asked to perform as non-medical caregivers.

Only twenty-nine percent of caregivers in the AARP survey reported having conversations with health care professionals about how to care for the patient. With regard to the shots, I received a roughly five-minute “training” at the hospital that included lots of encouragement.

We did not have family who could assist with caregiving nearby

My husband’s family lived halfway around the world. My Mom and stepfather lived locally, but they were elderly and had their own health challenges. We had many friends but they lived across the nine-county Bay Area. It wasn’t easy to ask someone to run to the pharmacy or grocery store for me.

And so, I was mostly on my own as a caregiver. The AARP survey found that more than sixty percent of caregivers identified themselves as the primary unpaid caregiver. The survey further found that sixty-nine percent of caregivers have no paid help in caregiving. And one in three caregivers are providing care completely alone.¹

I was lucky to be able to hire home health aides

I was fortunate in that we could afford to hire home health aides. But everything has a catch. The problem was that the aides typically had to be hired in four-hour blocks. And at about $25 per hour (several times a week), the cost starts to add up. And I usually did not need four hours of caregiving help.

On a typical day, I needed about 30 minutes of really specific and intensive help three times a day. This could be for tasks like helping my husband get into the car for a doctor’s appointment. And I needed help with keeping track of all his medicines. But home health aides, by law, aren’t allowed to plan and organize medicines.

I outsourced the mundane tasks

I ended up having the home health aides help with meal preparation and laundry and cleaning. Or perhaps just staying with him so that I could run errands. I recognize I was better off than a lot of caregivers.