Do Family Caregivers Feel Valued?

Carol Bradley Bursack’s article, “Family Caregivers Still Undervalued by Many” hit a chord with caregivers, myself included. See AgingCare.com for the full article. http://agingcare.com
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As Bursack points out:

• We live in a society that tends to value what we do over who we are. If what we do isn’t highly paid or well understood, many people often brush it off as unimportant. Thus, one of the most important jobs in our society today – that of being a family caregiver – is all too often undervalued by people who don’t understand. They couldn’t relate to that kind of life and didn’t regard caregiving as a “real” job.
• As millions of boomers’ parents continue to age, more people have been called on to be family caregivers. However, the general public still tends to lack a true understanding and respect for what caregivers do.
• A MetLife study, as reported on NPR’s “The True Cost of Caregiving,” says that the kind of care family caregivers provide would cost about $42,000 a year, if it was provided by paid workers. A private room in a nursing home averages more than $87,000. Costs vary, and have risen since the original study was updated in 2011.
• We shouldn’t have to justify our choices to care for our adult loved ones. Caregiving is about far more than money.
• Former colleagues, potential employers and even old friends often don’t understand why we frequently need to take substantial time away from our work; generally in the form unpaid leave or extended vacation time. It’s either that, or we quit our jobs. If we quit a paying job, we are often treated “like we took a long vacation.”
• Caregivers would like to have people understand that with or without outside employment, caregiving is a job.
• Caregivers often say, ”No job for which I’ve received a regular paycheck has ever compared in intensity or hours caregiving.” As with many difficult life situations, only those who’ve walked a similar path can understand on the deepest level.

Caregiver Comments (abbreviated):

LILDEB:
Carol, great article however, the only ones reading these are those who are the “caregivers.” I think we need to get more caregiving education to the public. I recently went off on a family member when he mentioned that, “Others have to go back to work.” That was it! That was all it took for me to blow a gasket! However, I have a job, a job 24/7 without pay, a job that doesn’t just stop because I am at home. Just maybe, through education, caregivers will be out from the dark and get the respect from the public as well as from family members.

We enter into care giving out of love or as a noble gesture without knowing the toll it is going to take on our lives, health, finances. I have learned the hard way that there is a LIMIT to what a human being can do or what we should expect of ourselves. And there is NO SHAME is saying I have had enough or I cannot do this anymore—especially when your own health fails.

I wish there were more information in the media to educate others about the important JOB caregivers are doing. There should be a pamphlet made BY CAREGIVERS for potential care givers WARNING them of all the hazards. Most of us go into this with blinders on and looking through “rose colored glasses……….”

STANDING ALONE:
Thank God for this article. You’ve nailed some of my own confused thoughts dead on. I’m too tired to write much, but to anyone who ever wants to judge me too harshly, come live my life.

CLH777:
This article hits home to many who struggle every day to be understood in a world that venerates high paying, high profile, people.

MARSHA530:
I have to say I was surprised at this article. Since becoming my grandma’s caregiver I have had nothing but praise and support from, not just friends, but complete strangers I’ve just met when I tell them what I do.

SISTERS2: (Caregivers) deserve more rewards than can ever be bestowed upon them. I’ve come to learn that it doesn’t matter what anyone says or thinks about the way I cared for “the only mom I ever had.” I did the best I could with what God handed to me and that’s all that matters.

OLDCODGER2: As with most things in life—whether it be birth, marriage, divorce—it is practically impossible for someone who has not actually experienced it to truly understand the dynamics. It’s the same with caregiving. There was no way to know how it felt until I did it. And it does not always feel good. My own charge—my dear MIL—feels and tells others that I “have it made…….”

SUMMER1900: Great article Carol! What I’ve come to realize through caring for my father 24/7 (with the help of my sister) is that the difference between a full time job say…40 hours a week and being a full time caregiver…168 hours a week is 128 hours. It’s more than a full time job. Add on the fact that a caregiver is responsible for another human being and all that involves…washing, dressing, feeding, toileting, medications, doctor appointments, entertainment and keeping one safe, day in and day out. You begin to live the life of the person that you are caring for. Add in the responsibility of home…cleaning, cooking, laundry, maintenance, lawn care, snow removal and bills. A caregiver wears many different hats.

WUVSICECREAM: I would like to point out a common situation in conjunction with this topic. Most caregivers need a backup plan for future care needs, or in the possible case of themselves getting ill or their own need of medical attention. So along with daily care needs being met, they have to find resources and navigate and negotiate through a maze of “what if’s” and prepare for anything that may cause a crisis situation, have to with no choice worry about all of this as well, and just do it all (usually alone) however possible or impossible. I have also witnessed myself and from knowing and communicating with other caregivers, that this should be considered a fact … that the people who do not cooperate or even extend a simple thank you, are usually the people who run when the situation is critical, but when everything is in order due to the caregivers efforts the runners come back like your nearing the finish line and complain about why the caregiver did this or that. I know one thing… all I ever asked for was cooperation, understanding and two words, “Thank You.”

HANK4422: If I had it to do over again I’d fake my death, change my name and flee to another country! I’ve found many of the people who are critical have already made up their minds and all the “explaining” just falls on deaf ears. This is one of those “dirty jobs”…

GLADIMHERE: I found a great website this morning when searching for states that permit family caregivers being paid. This link will take you to a document that provides contacts within states that permit the payment for family caregivers.

NICHOLAS29: Excellent article. More people need to read it and I plan to share it with those who do not understand what I do for my Mom. I prefer to have her AT home rather than IN a home. I get criticized that what I am doing is not contributing to the economy like an office position. Perhaps health insurers should contribute to the expenses of a caregiver because if the caregiving were to cease the patient may incur expensive care in a hospital or rehab center. But they do not want to listen to logic.

MY RESPONSE TO CAROL’S ARTICLE AND CAREGIVER COMMENTS:

Carol’s article, “Family Caregivers Still Undervalued by Many” certainly resonated with many of us! In response to LILDEB’s statement, “There should be a pamphlet made BY CAREGIVERS for potential caregivers WARNING them of all the hazards—I did exactly that. “What to Do about Mama?” was written for caregivers by caregivers. It isn’t a book by “experts,” but by people in the trenches—to help you develop realistic goals and expectations and strategies to keep your sanity through the trials and tribulations of caregiving. The book deals with the issues you have all addressed—and more. For example:

• Like LILDEB, I learned the hard way that there was a limit to what I could do, and had to say “enough” when I required knee replacements.
• Like Marsha530, I received accolades from friends, acquaintances, and strangers.
• SISTERS2’S comment that caregivers deserve more rewards than can ever be bestowed upon them reminded me of the remark I often heard, “Your reward will be in heaven.” Do you think it is a possibility that grandchildren or in-laws are shown a little more respect from the public than the “daughters” who are filling a more “expected” role?
• But then again, like OLDCODGER2, whose MIL feels and tells others that she “has it made,” my MIL said, “Everything is for your convenience!”
• To WUVSICECREAM, who pointed out that “the others” complain about why the caregiver did this or that—remind them of the ground rule: “If they want to weigh in on what the solution should be, they have to participate in the process that leads up to that.”
• And finally, to GLADIMHERE and NICHOLAS29, who both brought up some of the financial aspects of caregiving: One means of accomplishing “Aging in Place” (at least here in PA) is through a Personal Service Agreement or Caregiver Contract. The agreement provides family members compensation for quitting a job to take on the responsibility of caregiving. It recognizes the sacrifice of family members who give up income, and acknowledges the astronomical costs of assisted-living facilities or hiring in-home help. So sometimes, with digging, you CAN find a little bit of logic out there.

Barbara Matthews