The Hidden Heroes: A Look into the World of Caregiving

A year ago, Car­oll Mck­in­ney received a life-sav­ing hematopoi­et­ic cell trans­plant at the Site­man Can­cer Cen­ter in St. Louis. While there, he met fel­low Quin­cy res­i­dent Andy Tappe, who had just under­gone an allo­gene­ic blood stem cell trans­plant, at the same facil­i­ty. While these two men brave­ly endured their treat­ments, their equal­ly brave wives, Mimi Mck­in­ney and Michaela Fray-Tappe, stood by them as care­givers and sources of support. 

“When life takes an unex­pect­ed turn, care­givers encounter numer­ous obsta­cles, many of which are beyond their con­trol,” shared Michaela. ​“As a plan­ner and edu­ca­tor, the inabil­i­ty to strate­gize around his (Andy’s) diag­no­sis was par­tic­u­lar­ly dis­ori­ent­ing. One moment, we were liv­ing our lives nor­mal­ly; the next, I found myself nav­i­gat­ing a com­plex med­ical envi­ron­ment with lit­tle say over appoint­ments or treat­ment plans.”

Care­givers face the sig­nif­i­cant task of jug­gling work, nav­i­gat­ing a new sched­ule, main­tain­ing a home, and car­ing for chil­dren and aging par­ents. ​“It’s chal­leng­ing,” shared Michalea, ​“to man­age mul­ti­ple respon­si­bil­i­ties simul­ta­ne­ous­ly while try­ing to keep our lives mov­ing forward.” 

A part of keep­ing things mov­ing for­ward is mak­ing hard deci­sions regard­ing med­ical treat­ment, fam­i­ly, work, and even the hol­i­days — to name a few. ​“We talked to our four chil­dren (at the time, grades 2 – 12) about home­school­ing and mov­ing to St. Louis,” shared Mimi. Ulti­mate­ly, the fam­i­ly decid­ed to keep the chil­dren in Quin­cy. There are also hard deci­sions as fam­i­lies nav­i­gate a stretched bud­get. ​“It was chal­leng­ing to run num­bers and project the out­come of the expens­es, like Car­ol­l’s med­ical expens­es, time off work for both of us, trav­el, and adding the cost of a required sec­ond res­i­dence in St. Louis dur­ing his treat­ment,” shared Mimi. 

Then, there is the med­ical side of care­giv­ing. Michaela shared, ​“One of the most daunt­ing aspects of care­giv­ing was the respon­si­bil­i­ty for some­one med­ical­ly frag­ile — espe­cial­ly when I lacked a med­ical back­ground.” Care­givers find them­selves as a cen­tral fig­ure in their loved ones’ health­care. Michaela likened it to being ​“a coor­di­na­tor among his (Andy’s) team of doc­tors and nurs­es.” She was sur­prised by the lack of syn­er­gy between facil­i­ties because they use dif­fer­ent plat­forms and sys­tems. ​“To nav­i­gate this chal­leng­ing land­scape effec­tive­ly, I quick­ly rec­og­nized the impor­tance of keep­ing detailed notes, ” shared Michaela. ​“This metic­u­lous note­tak­ing not only helped me stay informed but also equipped me to ask informed ques­tions and engage in dis­cus­sions with health­care providers confidently.”

Care­givers often set aside their feel­ings. ​“It was chal­leng­ing try­ing to main­tain an opti­mistic, poised, and con­trolled dis­po­si­tion,” shared Mimi. ​“Know­ing that things could fall apart in mul­ti­ple ways, at any moment, and our lives would for­ev­er change in an irrecov­er­able way.” Which is why sup­port­ing care­givers is so cru­cial. ​“We all like­ly know some­one who is car­ing for a loved one. If you have a friend or fam­i­ly mem­ber in this role, take time to reach out,” said Michaela. ​“Just like the indi­vid­u­als they care for; care­givers ben­e­fit immense­ly from check-ins and companionship.” 

Both women encour­age the com­mu­ni­ty to build a sup­port­ive net­work for care­givers. ​“Togeth­er, we can cre­ate an envi­ron­ment where care­givers feel seen, appre­ci­at­ed, and con­nect­ed,” said Michaela. They encour­age care­givers to lean on fam­i­ly and friends, con­nect with fel­low care­givers, uti­lize avail­able resources, seek expert help nav­i­gat­ing med­ical sit­u­a­tions, and doc­u­ment everything.

There were bless­ings as well. For Mimi, ​“the most unex­pect­ed was hav­ing friends, fam­i­ly, and a com­mu­ni­ty orga­ni­za­tion, like the Quin­cy Med­ical Group Foun­da­tion, will­ing to give up their time and resources to add to ours.” The Mck­in­ney fam­i­ly received unex­pect­ed sup­port from indi­vid­u­als who altered their lives to help care for Car­oll in St. Louis and the boys in Quin­cy. This assis­tance allowed Mimi to bal­ance time between her hus­band and chil­dren. ​“We also were not expect­ing to be blessed by the Quin­cy Med­ical Group Foun­da­tion, which helped our fam­i­ly cov­er some house­hold bills when we did­n’t have a means of pay­ing for addi­tion­al expens­es. That was one of the most unex­pect­ed, mean­ing­ful, and com­fort­ing gifts we’d received dur­ing such a stress­ful time for our family.” 

Michaela deep­ened her com­mit­ment to her faith and learned to ask for help, even though it was dif­fi­cult. It also ignit­ed a new pas­sion for Michaela to take what she learned through her expe­ri­ences to help care­givers get need­ed sup­port, includ­ing devel­op­ing a care­giver’s guide­book. ​“The jour­ney of care­giv­ing can be filled with unex­pect­ed chal­lenges. Embrac­ing the role of an advo­cate has been a cru­cial part of my expe­ri­ence, ” shared Michaela. ​“By acknowl­edg­ing these obsta­cles, we can work towards a more sup­port­ive health­care envi­ron­ment for care­givers and patients alike.