Care­givers bat­tle iso­la­tion by telling their sto­ries

Moms who look af­ter chil­dren with dis­abil­i­ties share their lives in can­did doc­u­men­taries fea­tured on a new web­site for care­givers

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The Port Co­quit­lam home of Sheila Gutsche is so im­mac­u­late and bright it’s al­most im­pos­si­ble to imag­ine what the fam­ily en­dured af­ter Gutsche’s daugh­ter, Shara, suf­fered a life-al­ter­ing brain in­jury.

The walls are hung with Shara’s beau­ti­ful wa­ter­colours and Shara, 41, is a bub­bly pres­ence, laugh­ing and jok­ing. But 28 years ago when Shara was struck by a drunk driver who ran a red light, her life was changed for­ever. “The doc­tors didn’t know if she would live through the night,” said Gutsche.

Shara, just 13, hov­ered be­tween life and death for sev­eral weeks and un­der­went two ma­jor brain surg­eries. Part of her brain’s frontal lobe was re­moved. Doc­tors sug­gested she be taken off life sup­port, but Shara’s par­ents re­fused.

When she fi­nally emerged from the coma, Shara could no longer speak, walk, talk or eat in­de­pen­dently.

Gutsche gave up her job to be­come Shara’s pri­mary care­giver. She was responsible for help­ing her daugh­ter to bathe and go to the toi­let, to learn to speak and eat, and get to phys­io­ther­apy and doc­tor’s ap­point­ments.

Her daugh­ter was a dif­fer­ent per­son, and so was she. No longer a mother to a gig­gling teen, no longer part of a com­mu­nity of other moth­ers rais­ing healthy chil­dren, Gutsche struggled with iso­la­tion, de­pres­sion and anx­i­ety.

It’s a story of chal­lenge and re­cov­ery she shares now, with­out reser­va­tion, in the hopes of help­ing oth­ers on sto­ries­for­care­givers.com.

The web­site, which fea­tures short doc­u­men­taries, we­bi­nars, TED talks and vir­tual bul­letin boards where care­givers can post their sto­ries and reach out to oth­ers, was pro­duced by Van­cou­ver-based Ban­nis­ter Ber­gen. Ber­gen ac­cessed fi­nanc­ing from the Telus fund, which has a man­date to pro­duce con­tent that sup­ports health and well-be­ing.

Ber­gen said he hopes the site will be a re­source, and a com­fort not only for care­givers but those who may one day be care­givers. “Peo­ple like my­self,” said Ber­gen, 41, a fa­ther of three. “My par­ents and my in-laws are in their 70s, and my wife and I have had the con­ver­sa­tion fre­quently about the health and wel­fare of our par­ents as they get older.”

Ac­cord­ing to Statis­tics Canada data, 28 per cent of Cana­di­ans aged 15 years and older pro­vide care to a fam­ily mem­ber or friend with a long-term health con­di­tion, dis­abil­ity or ag­ing needs.

Whether through ac­ci­dent, ill­ness or age-re­lated dif­fi­cul­ties, the role of care­giver of­ten ar­rives un­ex­pect­edly. Fam­ily mem­bers can find them­selves in the role with­out much choice. In ad­di­tion, the work they do is of­ten in­vis­i­ble, said Ber­gen.

Sto­ries­for­care­givers.com fea­tures three orig­i­nal doc­u­men­tary se­ries. Dr. Yvette Lu, a fam­ily prac­ti­tioner, par­tic­i­pated in the web­site’s doc­u­men­tary se­ries “House Calls.” Lu vis­its with fam­ily care­givers to trou­bleshoot chal­lenges, whether it’s finding time for one­self as a care­giver, or learn­ing to man­age the needs of a fam­ily mem­ber with a chronic dis­abil­ity.

“Usu­ally care­givers have mul­ti­ple re­spon­si­bil­i­ties in ad­di­tion to car­ing for the ones they love, or they are what we call ‘sand­wich care­givers,’ ” said Lu. “They take on a lot.”

Ac­cord­ing to the 2002 Stats Canada Gen­eral Social Sur­vey, about 27 per cent of Cana­di­ans be­tween 45 and 64 had chil­dren un­der 25 liv­ing with them and also helped care for an el­derly fam­ily mem­ber.

One of the big­gest chal­lenges for care­givers is self-care, said Lu. “On a plane, when the oxy­gen masks fall down you have to put one on your­self first, be­fore you put one on some­one else. If you can’t breathe, how can you help some­one else?”

Gutsche’s story is fea­tured as part of the site’s “Car­ing for those Who Care” se­ries. Gutsche said her daugh­ter’s ac­ci­dent changed every­thing. “Even if I thought about a sce­nario like this, I didn’t re­al­ize how dev­as­tat­ing it was. You be­come iso­lated.”

Gutsche sought help, but a bad re­ac­tion to med­i­ca­tion for de­pres­sion led to hos­pi­tal­iza­tion.

In hos­pi­tal, Gutsche found a doc­tor who sim­ply al­lowed her to cry and let the emo­tions out. “The truth is you can’t take a pill to get over some­thing like this,” said Gutsche.

Shara learned to talk, walk and eat again, and Gutsche learned to em­brace her fam­ily’s new life.

Although Shara needs help with pick­ing out cloth­ing, with her mem­ory and un­scram­bling her thoughts, she has friends and par­tic­i­pates in ac­tiv­i­ties like com­edy classes, paint­ing, wood­work­ing and vol­un­teer­ing at the lo­cal thrift shop.

Gutsche found ways to prac­tise grat­i­tude. “It’s a joy­ful ex­pe­ri­ence, too, be­cause it opens your eyes to new things. Through the brain in­jury com­mu­nity we’ve met so many peo­ple, and we know that we’re lucky be­cause we all have each other.

“The thing that needs to change for care­givers is aware­ness,” said Gutsche. “Whether you are care­giv­ing for a stroke vic­tim or Alzheimer’s, a brain in­jury vic­tim or chil­dren with dis­abil­i­ties, it’s the in­vis­i­bil­ity of the work that you do and the to­tal lack of ac­knowl­edg­ment that hurts.”

Gutsche be­lieves the web­site will be a life­line to other care­givers. “Con­nect­ing to other peo­ple who are go­ing through what you are, or some­thing worse, when they talk about what they are go­ing through and you see your­self in it you can say, OK, I’m not crazy. This is a hu­man ex­pe­ri­ence.”

Mandie Clark, a Kelowna mom who also let the cam­eras into her home to share her ex­pe­ri­ences on sto­ries­for­care­givers.com, said she could not have imag­ined the life she lives to­day as the mother of three chil­dren, two of whom have spe­cial needs.

Clark and her hus­band Paul are par­ents to eight-year-old Moses, “Mr. Hand­ful,” who has autism and epilepsy. Five-year-old Rose has cere­bral palsy with some mild paral­y­sis on her right side. The el­dest, 10-year-old Joey, is mom’s lit­tle helper.

The Clarks re­cently moved back to Kelowna from Cal­gary to be closer to Mandie’s fam­ily. “I was really over­whelmed with the chal­lenges I was fac­ing,” said Clark.

The chal­lenges start early in the morn­ing. Moses gets up at 4 or 5 a.m. ev­ery day.

Clark has been work­ing on toi­let train­ing Moses “for about five years,” she says with a laugh. “Moses fe­cal smears. I don’t know why he does it, and I can’t get him to stop. He puts it in his hair. So ev­ery morn­ing I’m dealing with that.”

Clark gets up when Moses awak­ens. First or­der of the day is to clean up and shower Moses, who finds the sen­sory in­put of the ex­pe­ri­ence such an or­deal that he cries and protests. “It’s al­most like show­er­ing a cat. It’s in­tense,” said Clark.

She feeds him, prepares clothes and lunches for the other kids and her hus­band Paul. Joey helps put lunches into the school bags and helps Moses get his jacket on. Moses has fund­ing for an ed­u­ca­tional as­sis­tant at school, but he can only attend a cou­ple of hours a day and lately he’s been run­ning away.

“To­day I was called to pick him up early be­cause he left the school five times,” said Clark. “In a pub­lic school they are not al­lowed to put their hands on him so he’s just out wan­der­ing around and I have to go pick him up.”

Be­cause of Moses’ needs, Clark can’t work dur­ing the day, so she works in a restau­rant nightly from 6 p.m. to 1 a.m.

“Some­times I just feel like I need a light at the end of the tun­nel,” said Clark, who tries to have din­ner prepped be­fore she goes to work. “I think to my­self, do I eat, do I sleep or do I shower?”

Clark said when she gets stuck on think­ing about her own dif­fi­cul­ties, she imag­ines “how much more dif­fi­cult it would be to live in­side Moses’s body, and en­dure that con­fu­sion, frus­tra­tion and ad­di­tional iso­la­tion.”

She be­lieves sto­ries­for­care­givers.com will be an im­por­tant tool to help oth­ers.

“Some­times you get stuck in a funk of feel­ing really alone. When you see an­other par­ent with the same strug­gles it re­minds you that you are not alone. Other peo­ple are go­ing through the same strug­gles and hav­ing suc­cess­ful and happy out­comes.”

Shamira, who prefers not to use her last name to pro­tect her mother’s pri­vacy, said she fought the per­cep­tion of her­self as a care­giver when she first re­al­ized her par­ents needed help some 17 years ago. Although she has si­b­lings, Shamira, 50, found her­self in the role of care­giver by de­fault.

It wasn’t just her cul­tural her­itage — Is­maili Mus­lim East In­dian — that added a sense of duty, said Shamira. “The onus seems to be on the women.”

Shamira cared for her fa­ther be­fore he died in 2007 in his mid-80s, and has just helped her mother, 86, make the tran­si­tion to a nurs­ing home. “One of the chal­lenges was the con­stant on­slaught of dif­fer­ent med­i­cal di­ag­noses,” said Shamira.

Com­ing from Cal­i­for­nia to step into the care­giv­ing role added to the chal­lenge. “I didn’t have re­sources or com­mu­nity. I’ve learned that it’s really not some­thing you can do alone.”

Shamira calls the care­giv­ing process “a pro­found spir­i­tual jour­ney.” She’s learned to ac­cept the process “with­out tak­ing on the pain.”

For Shamira, shar­ing her ex­pe­ri­ence on sto­ries­for­care­givers.com is an op­por­tu­nity to pay it for­ward and be­gin to help oth­ers fac­ing sim­i­lar chal­lenges. “The con­nec­tion be­tween peo­ple who are dealing with the same kind of sit­u­a­tion, to feel you are not alone, is huge. We mat­ter.”

“Some­times you get stuck in a funk of feel­ing really alone. When you see an­other par­ent with the same strug­gles it re­minds you that you are not alone. Other peo­ple are go­ing through the same strug­gles and hav­ing suc­cess­ful and happy out­comes.” — MANDIE CLARK MOTHER OF THREE

ARLEN RE­DEKOP/PNG

Port Co­quit­lam’s Sheila Gutsche, right, has been car­ing for daugh­ter Shara, 41, since Shara suf­fered a life-al­ter­ing brain in­jury at the age of 13 when she was hit by a drunk driver. “The truth is you can’t take a pill for some­thing like this,” she says.

ARLEN RE­DEKOP/PNG

Sheila Gutsche takes a break on steps in her Port Co­quit­lam home, with her daugh­ter Shara vis­i­ble in a mirror. Gutsche gave up her job to be­come Shara’s pri­mary care­giver af­ter Shara’s trau­matic brain in­jury, suf­fered in an ac­ci­dent nearly 30 years ago.

Sheila Gutsche (right) at home with her daugh­ter Shara.

— CHRIS STAN­FORD

Kelowna mom Mandie Clark with, from left, five-year-old Rose, 10-year-old Joey and eight-year-old Moses. The Clarks re­cently moved back to Kelowna from Cal­gary to be closer to Mandie’s fam­ily. “I was really over­whelmed with the chal­lenges I was...

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