Family caregivers are the front line soldiers in the war to prevent our loved ones from dying along the side of the proverbial road. With nursing home costs and conditions making them places we most want to avoid, the value of family caregiving has been placed at about $500 billion a year by the Rand Corp.
Care of elderly parents, spouses, and veterans is an all-consuming task that completely disrupts ― some say sacrifices ― a healthy life while supporting an unhealthy one. Still, we do it ― we rise in spades when a loved one needs us. There are more than 34 million people in America providing unpaid care to another adult who is ill or disabled. The lack of support for these 34 million is something we at Huff/Post50 hope to shed a spotlight on. Here are 11 small things that caregivers told us would make a big difference to them:
1. Let us bitch.
Caregivers need a safe place where they can stop fake-smiling. It’s why Facebook groups are so popular at 2 a.m. Some groups are based around specific health problems, which makes them useful places to get up-to-date medical information or learn the ins-and-outs of the insurance game from those who have gone before you. But the real reason we are all there is to bitch freely without being judged. Our non-caregiver friends are uncomfortable when you say things like “my spouse wet the bed last night.” Caregivers? we get it.
2. Let us bitch, even if it’s about the loved one in our care.
Caregiving sucks and it pretty much destroys what had been our previous normal existence. It would be abnormal if a caregiver didn’t occasionally fantasize about just driving off into the sunset.
When we reach this point, it’s human nature to look at the person we blame for our predicament. The guy on the gurney, that’s who. We can say that if our patient hadn’t smoked/drank/eaten Hershey bars like they were going out of business, none of this would have happened. We may even be right. Let us vent. Let us rage. We are a living reminder that life isn’t fair. It isn’t elder abuse to resent what someone else’s lifestyle choices or genetics have done to our lives. Elder abuse is when we push the gurney into oncoming traffic.
3. Stop “reminding” us to take care of ourselves.
Puh-lease. We aren’t ninnies. We know we need to take breaks, walks, visit with friends and write a little fun into the grim program that our lives now follow. Problem is, non-caregivers don’t begin to understand the logistics involved for us to do any of that. Before someone suggests to a caregiver that they “take some time for yourself,” maybe they could preface it with “Hey, can I come over and stay with Bill while you go catch yourself a movie or dinner with friends?” Otherwise, please preach your nonsense and platitudes elsewhere.
4. Pay us ― if not what we are worth, at least what it costs us.
We save the government ― and taxpayers ― billions of dollars a year. Often, we are the only thing between our disabled loved ones and the curb. So unless America would like to see its elderly, sick and disabled veterans dying in droves under the freeway, how about coughing up some dough to help us out? Caregivers should at least be paid for missed hours at work, for having to use up their vacation days to drive their patient to dialysis, for the expenses involved in home accommodations.
5. Remember that a caregiver is still a person.
“My name is Heather, not Heather-the-caregiver,” says Heather Worley, a 31-year-old military wife who cares for her injured husband at home just outside Ft. Benning, GA. He was injured in 2009 in Iraq, where they were both deployed. He suffers from a traumatic brain injury, the fusion of several of his cervical vertebrae, and severe PTSD. “Depression and anxiety run rampant in the caregiving community,” she says. “We have lost our sense of self and spend most, if not all of our time, focused on the needs of our loved one.”
Bethany McGowan says that she wishes she could find herself again. “Somewhere along this journey I got lost and I no longer know who I see in the mirror.”
6. Give caregivers a respite when they need it.
As Tina Gonzalez, a Marine wife, wrote, her greatest wish is just “to be able to leave the house alone without feeling guilty or anxious ― even when it’s just to the grocery store.” Caregivers need support. We can’t even go to a caregiving support group meeting unless arrangements are made for someone to watch our patients.
7. Stop fighting with caregivers.
Whether it be a private insurance company, Medicare or the VA, pretty much every encounter with the people who are supposed to help caregivers turns into a struggle. The support system is broken ― badly. Incompetence is only trumped by ignorance topped off with a dash of rudeness.
Caregiving means spending long waits on hold only to be given misinformation. It means learning the hard way about loopholes in your insurance, the absurdity of Medicare rules, the military’s inflexibility. Rules change on you mid-way sometimes too. It may have been covered last month, but the formulary was changed so too bad for you.
Dealing with the so-called support people is aggravating. Kaylynn Tootill wishes she didn’t “have to repeat myself 200 times” as she works her way through the voice loop when she calls the VA seeking help. And maybe, she adds, the VA could also “not have things take months that should take a day.”
The constant fighting for support is what wears caregivers down. I don’t want a social worker to give me a list of (generally outdated) resources for rides to medical appointments. I want the social worker to arrange the ride for my husband so that I don’t have to. Now that would be helpful.
8. Coordinate systems better.
Lord help the senior citizen who has Medicare as a secondary insurer and a private employer-sponsored plan as a primary. You will be a ping-pong ball sent back and forth, getting conflicting answers the whole game. Nobody wants to be the carrier who pays your medical bills and while you thought you were so smart by having all this great insurance, you likely would have been better off with just one. Theresa Schaecher says things are no better with the military. “I wish that the VA system wasn’t so difficult to navigate. I wish that the Army and the VA and SSA all talked to one another instead of having to learn requirements of multiple systems and jump multiple hoops,” she said.
9. Move faster.
Programs offering help may exist but they are mired in red tape and can take weeks, even months, to qualify your patient. Take Access LA, for example: There is no way to apply online or over the phone for this service to take your patient to medical appointments. You must call and allow five days for them to snail mail you an application. They then take up to 21 days to approve or deny that application, and if approved, another few weeks until they send you an Access card. A spokeswoman told The Huffington Post that it takes anywhere from five to eight weeks for a card to be issued. She said it was because of the great volume of requests. And here we thought it was because they lacked a postage stamp.
10. Establish a Yelp-like review system where we can review home health care practitioners in a public spotlight.
At the risk of dissing some hard-working, competent and caring home health-care worker who has yet to cross my path, I am truly at a loss as to why most of them even exist except to bill our insurance company absurd amounts of money. Maybe they give some caregivers a false sense of security but my guess is that most caregivers know when to call 911 the same as they do.
Maybe instead of having someone come over to take your patient’s vital signs ― something most family caregivers can do ― they could send someone to do the laundry, prepare some meals, meet the school bus and wait on hold for us when we need to call Medicare about something.
11. Don’t tell us we are lucky because we don’t work.
Don’t work?? Did you just say that what caregivers do isn’t work? Leslie Moore-Boyd says “This is the hardest job I have EVER had.” Kaylynn Tootill agrees and said, “I have been told that I have a sweet life because I stay home with my husband. People don’t understand it means I am with him 24/7 and it takes a toll.”