I don’t know who came up with the term “informal caregiver,” but they need to be punched in the face. Yes, you read that right. It infuriates me. The idea that family and friends who have given their time, money, and sometimes their lives, to take on the all-encompassing task of caregiving should be considered “informal” is ludicrous.
Yes, I know it refers to “unpaid” caregivers, and that’s what might be even more aggravating. If whoever coined that term had ever had to do the job they would never have said it. Without forgetting the kindness and dedication of most I have run into who have chosen to be professional health care workers, they are specifically that – professional health care workers. In my opinion, the term, “Caregiver” should be reserved for a family member, friend, or partner who has given of themselves, without expectation of restitution, to fully care for their loved one – even the painful task of moving them to a full-time care facility for medical and safety reasons and managing their care remotely.
The Caregiver Alliance defines a ‘caregiver‘ this way … “A caregiver—sometimes called an informal caregiver—is an unpaid individual (for example, a spouse, partner, family member, friend, or neighbor) involved in assisting others with activities of daily living and/or medical tasks. Formal caregivers are paid care providers providing care in one’s home or in a care setting (day care, residential facility, long-term care facility).” For the purposes of this discussion, statistics generally refer to caregivers of adults.
So why do I think these terms should be changed? Let’s lay out some of the facts.
“Formal” or “professional,” or “compensated” health care workers: (There are roughly 2 million homecare workers currently employed in the U.S.) At the top of the list, these professionals, while usually very dedicated and kind, are professional health care workers – not caregivers. They are doing a job they’ve been trained to do and for which they are compensated. These workers get days off. They’re not required to work continuously and are even prevented by law from doing so for a period of time without a break. They get paid for their time, sometimes with full benefits, overtime, and vacation days. They can take off when they’re sick and may even get holidays in some cases. They don’t have to continuously manage the patient’s money or see to their medications, manage doctor appointment schedules day-in and day-out, make sure they have enough food in the house, or defend against those who might take advantage of the patient. And, they get to go out and enjoy time with friends and family on their time off, since they actually get to have friends and time off.
“Informal,” or “unpaid,” or “family” caregivers: (There are 43.5 million “informal” caregivers in the U.S.) First off, they are workers. There are no days off. Many (as I did) work 24-hours a day, 7-days a week, without a break. There is no pay, no benefits, many often live in poverty after losing jobs, homes, healthcare, and even thousands of dollars in social security benefits from not being able to hold a job. There are no vacation days, sick days, or holidays. Some have to manage multiple households, tending to finances, cooking, cleaning, and maintenance. Generally, “informal” caregivers act as financial and medical powers of attorney, or even full guardians, taking on the backbreaking responsibility of maintaining their patient’s living situation from stem to stern.
So now, tell me, which one is the “informal” caregiver? Don’t get me wrong, once again, I have the utmost appreciation and respect for professional healthcare workers. But it’s not the same, and the perception is that family caregivers do less and are less experienced and trained and that’s not accurate. I have even seen websites offering “caregiver certification” for family caregivers. What? Seriously? With what money or time, and exactly what could some profiteer teach me that I don’t already have a Ph.D. in about looking after a family member? Give me a break! Shame on those people.
It’s in the numbers.
At some point, we have to realize that the “informal” caregivers exist in numbers that, under other circumstances, would be powerful enough to effect change on a national scale. There are 43 times more of them than all the people in South Dakota, 3 times more of them than all the living U.S. Veterans in the country, and 2 1/2 times more than all the active members of all combined labor unions. But they have zero power or lobbying clout. There is nothing they can do to get the government to help them. They are sick and getting sicker. They’re tired and getting more tired. They’re dying at an alarming rate, sometimes from suicide because of crushing depression. Where is their vacation time? Overtime pay? Relief?
It’s not coming. Not until the government steps up. But no congressional representative is going to take up that fight. Why? There’s no money in it. No power or leverage to be used later. Family caregivers are FORMAL caregivers, and they need our help. Write and call your congressional and state legislature representatives. Tell them to look into this problem. In the meantime, you can help.
Correct people when they refer to us as “informal” caregivers. We are THE Caregivers. For those people you know who are Caregivers, you can help them too. Take them a meal. Sit and talk with them. Sit with their family member so they can take a nap or look after themselves in some way. Don’t abandon them. Even though they’re acting strong and tough, they’re suffering. Silent and weary. You can help. Do what you can, but at all costs, recognize their timeless, selfless contribution and respect it.