Rob Lowe on El­der Care

In at­tend­ing to his mother af­ter her breast can­cer di­ag­no­sis, ac­tor Rob Lowe ex­pe­ri­enced an in­creas­ingly com­mon stress: tend­ing to an ag­ing par­ent

Newsweek - - Contents - OPIN­ION BY ROB LOWE @Roblowe

an es­ti­mated 43.5 mil­lion Amer­i­cans are tak­ing care of ag­ing rel­a­tives and friends, sac­ri­fic­ing time, money and some­times their ca­reers and per­sonal health. They are do­ing the work of pro­fes­sional care­givers, who spend years train­ing for the job. As baby boomers age, the de­mand for un­paid care­givers is ris­ing. Mean­while, thanks to smaller fam­ily sizes, higher divorce rates and in­creas­ingly de­mand­ing jobs, the num­ber of peo­ple avail­able to help their el­derly loved ones is shrink­ing. A grow­ing num­ber—25 per­cent—are be­tween ages 18 and 34.

If there’s one thing that’s bi­par­ti­san, it’s car­ing for the el­derly. In Jan­uary 2018, Pres­i­dent Don­ald Trump signed the Rec­og­nize, As­sist, In­clude, Sup­port and En­gage (RAISE) Fam­ily Care­givers Act, a law that di­rects Sec­re­tary of Health and Hu­man Ser­vices Alex Azar to de­velop and main­tain a strat­egy to sup­port care­givers in the next 18 months. Ten months later, im­ple­men­ta­tion has been slow, to the frus­tra­tion of Demo­cratic Sen­a­tor Tammy Bald­win of Wis­con­sin, who in­tro­duced the bill in the Sen­ate, along with Repub­li­can

Su­san Collins of Maine.

In Septem­ber, Congress fi­nally al­lo­cated $300,000 to es­tab­lish a fam­ily care­giv­ing ad­vi­sory coun­cil, which will ad­dress po­ten­tial pol­icy so­lu­tions. Ad­di­tion­ally, 36 states have passed the Care­giver Ad­vise, Record, En­able (CARE) Act, which re­quires hos­pi­tals to iden­tify the pa­tients’ care­givers, keep them in­formed and pro­vide ba­sic train­ing for med­i­cal tasks they’ll be ex­pected to per­form.

Em­brac­ing Car­ers, a global ini­tia­tive launched in 2017 by phar­ma­ceu­ti­cal com­pany EMD Serono, hopes to call at­ten­tion to the needs of this over­worked and un­der­ap­pre­ci­ated com­mu­nity. Ac­cord­ing to the ini­tia­tive, nearly a quar­ter of the 3,516 un­paid care­givers they sur­veyed in 2017 said their ca­reers had suf­fered be­cause of tend­ing to a fam­ily mem­ber. In honor of Na­tional Fam­ily Care­givers Month, ac­tor Rob Lowe (St. Elmo’s Fire, Parks and Re­cre­ation) teamed up with the com­pany to tell his story and send some en­cour­age­ment to the mil­lions strug­gling to care for a loved one.

i had my first ex­pe­ri­ence with un­paid care­giv­ing fairly early. My fa­ther, Charles, was di­ag­nosed with lym­phoma at age 50. I was 26. Luck­ily, he was fi­nan­cially suc­cess­ful and had a lov­ing wife, my step­mother. It was chal­leng­ing, but she was there for him. He got through it and went into re­mis­sion.

Two years later, they di­vorced. I’ve al­ways thought it had to do with the stress that re­sulted from my step­mother tak­ing care of my fa­ther dur­ing his ill­ness.

In my late 30s, my mother, Bar­bara He­pler, was di­ag­nosed with Stage IV breast can­cer. That was when I was in­tro­duced to the front lines of what so many mil­lions are ex­pe­ri­enc­ing. She did not have a hus­band or a sig­nif­i­cant other, so it fell to me and my two broth­ers to nav­i­gate ev­ery­thing from

her ini­tial di­ag­no­sis to doc­tor shop­ping, treat­ment op­tions, driv­ing her to ap­point­ments and, fi­nally, hos­pice care and the end of life—which was pro­foundly dif­fi­cult, ob­vi­ously.

At the time, I was star­ring in and pro­duc­ing a net­work tele­vi­sion show, The Lyon’s Den. It was fight­ing for its rat­ings life. If I took time off, the show would be can­celed. I was re­spon­si­ble for 150 crew mem­bers, so I had to find a way to do both. My time was di­vided equally be­tween try­ing to save the tele­vi­sion show and try­ing to save my mother’s life. I don’t know what’s more stress­ful, hav­ing to quit your job or not be­ing able to quit your job. (The show, by the way, was can­celed.) For­tu­nately, I had broth­ers to pass the ba­ton to. We’re also a fam­ily that has some means, and we were able to bring in peo­ple as needed. For peo­ple who don’t have that, I can’t imag­ine how hard it must be.

There are so many lit­tle ways a ded­i­cated care­giver can be a game changer—some­one who can dra­mat­i­cally in­crease the chances of a suc­cess­ful out­come for your loved one. It is crit­i­cal, for ex­am­ple, for pa­tients with a se­ri­ous ill­ness to have a third party with them at doc­tor’s ap­point­ments. When I was help­ing to pro­mote an aware­ness cam­paign for a new chemo­ther­apy drug in 2002, I came across a star­tling statis­tic: Pa­tients of­ten re­tain just 10 per­cent of the in­for­ma­tion they are be­ing given. Ten per­cent!

On top of that, there is the ne­go­ti­a­tion of med­i­cal cov­er­age, which re­quires phone calls, weed­ing through pa­per­work and talk­ing to in­sur­ance com­pa­nies and doc­tors. I re­mem­ber think­ing, Je­sus Christ, what if I were sick and had to do this on my own? I don’t think I could get out of bed in the morn­ing.

The peo­ple we are talk­ing about— the friends and fam­ily mem­bers who are out there do­ing cru­cial work— are un­paid. Watch­ing a loved one go through an ill­ness, pos­si­bly end­ing in death, is stress­ful and de­press­ing. Add fi­nan­cial and sched­ul­ing bur­dens, and the load for care­givers is enor­mous. To them I say, Don’t for­get about your­self. When you get on an air­plane, the crew says, “Se­cure your own mask first be­fore help­ing oth­ers.” Why? Be­cause with­out you tak­ing care of your­self, you can’t take care of any­body else.

It’s an in­tim­i­dat­ing role to step into, and there’s no set way to do it. You don’t have to be per­fect. You don’t have to know all the an­swers. You are likely to make some mis­takes—and that’s fine! Just know that the care you give has the po­ten­tial to be one of the most re­ward­ing acts of your life.

Tak­ing care of my mother was scary, un­be­liev­ably stress­ful and painful. It was also a time to be with her in a way that might never have hap­pened un­der other cir­cum­stances. When she passed in 2003, I felt that we’d had the talks we needed to have, that we’d spent the time to­gether we needed to spend. I have friends who’ve been through deaths of par­ents and feel cheated; if only they’d been able to tell them how much they loved them, if only they’d done this or that. One of the hid­den gifts of be­ing a care­giver is that you’re with them. You’re able to do and say all of those things in the proper time.

So be present for it. There is ev­ery rea­son to be­lieve that you will look back on this chap­ter with sat­is­fac­tion. In the mean­time, don’t hes­i­tate to get help. That’s why I’ve part­nered with EMD Serono and Em­brac­ing­car­ers .com, where you’ll find in­for­ma­tion re­gard­ing ev­ery­thing you’ll be, or are, go­ing through.

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