Care­giv­er Reflec­tions and Con­nect­ing with Support

November 20, 2024

In hon­or of Nation­al Fam­i­ly Care­givers Month, real care­givers share their expe­ri­ence and how they’ve found sup­port. Their reflec­tions are below.

Care­giv­ing is dif­fi­cult and crit­i­cal work. To find sup­port as a fam­i­ly care­giv­er, con­nect with Our Care­giv­er Resource Cen­ter today at 847−524−8800 ext. 124 or learn more here.

Hon­or­ing Caregivers

In hon­or­ing care­givers, I admit it has tak­en me a long time to come to terms with being one. Like most care­givers who are sup­port­ing a loved one, we have had oth­er lives and careers that have pro­vid­ed life­long jour­neys with twists and turns that led to pur­pose­ful and ful­fill­ing lives. Then in the blink of an eye or the dawn­ing real­iza­tion, life is sub­tly or dra­mat­i­cal­ly different.

I remem­ber the first time a health­care work­er asked me if I was my spouse’s care­giv­er, I said ​“No, I’m his wife.” It was the first time it occurred to me that yes, I was his care­giv­er, too.

Like many, my sit­u­a­tion is a very slow pro­gres­sion that has crept up on me; one that I have spent a great deal of time shift­ing among denial, hope­ful­ness, anger, grate­ful­ness, and frus­tra­tion. With a reg­is­tered nurs­ing back­ground, I did not see myself forced into the nurs­ing role at home once I left the hos­pi­tal set­ting. Yet, this is where I find myself. I am con­stant­ly shift­ing my iden­ti­ty from wife to care­giv­er and back. This is a bat­tle I under­take near­ly every day. 

I am at once grate­ful for my nurs­ing and health­care back­ground and also find it a bit of a curse. I believe I know intu­itive­ly what to wor­ry about and what signs and symp­toms to let go for now. I also spend an extra­or­di­nary amount of time wor­ry­ing about what might hap­pen next. Wait­ing for the oth­er shoe to drop and let­ting real time life go by with­out a thought for today and what joy is to be found. I think care­givers tend to live in a state of antic­i­pa­to­ry wor­ry or grief. What is going to hap­pen next, because we know it will be some­thing unexpected. 

Care­giv­ing is hard work; phys­i­cal­ly and emo­tion­al­ly. Care­givers are the unsung heroes who are rarely off duty and can always tell you what else they have to do before they fall exhaust­ed into bed at night. Care­givers are the ones hold­ing the fam­i­ly togeth­er with the blood, sweat, and tears; they live in the back­ground pick­ing up and putting away the dis­card­ed trou­bles of the day. While it was not my choice to do this role, I know I am essen­tial and loved for the role that I pro­vide. I am sure oth­er care­givers feel much the same way I do.

- Jan­ice Noble, Ph.D.

Con­nect­ing with KYC

When my hus­band and I moved back to Illi­nois last year, we need­ed resources to assist in my husband’s care. I was so appre­cia­tive and delight­ed to dis­cov­er Ken­neth Young Cen­ter. KYC pro­vid­ed all the nec­es­sary resources I des­per­ate­ly need­ed. Their knowl­edge and infor­ma­tion have been invalu­able and set me on a course that today has proved crit­i­cal to my hus­band and I. KYC’s care­giv­ing pro­gram also arranged and con­tin­ues to sup­port my husband’s atten­dance in A Car­ing Place with funds they dis­trib­ute from the AgeOp­tions through the Old­er Amer­i­cans Act.

Dur­ing our inter­ac­tion, our Care­giv­er Spe­cial­ist shared with me about a Respite Care Pro­gram called A Car­ing Place. This pro­gram has proven to be the high­light of my husband’s week and a won­der­ful oppor­tu­ni­ty for me to regen­er­ate. The staff and vol­un­teers tru­ly live up to their name as they pro­vide valu­able activ­i­ties and sup­port for those in their care as well as check­ing in reg­u­lar­ly with the par­tic­i­pants’ sig­nif­i­cant others.

Once per month my hus­band and I have the priv­i­lege to attend KYC’s Mem­o­ry Café. It is always a fun expe­ri­ence that includes lunch and a delight­ful pro­gram. We look for­ward to the event and the abil­i­ty to meet friends and social­ize as a cou­ple over lunch.

I thank KYC for all the sup­port they pro­vide the com­mu­ni­ty and most specif­i­cal­ly the senior pop­u­la­tion in our area.

- Jan­ice Noble, Ph.D.

From Career Care­giv­er to Fam­i­ly Caregiver

My name is Jodette Szafran, and by pro­fes­sion, I am a Com­pan­ion Care Giv­er. For 10 years I worked for an agency. In 2024 I required a seri­ous sur­gi­cal pro­ce­dure and depend­ed on my mom to help me recu­per­ate at her home. Dur­ing my recu­per­a­tion we learned mom was diag­nosed with can­cer. Since I was on med­ical leave of absence from my agency, I made a deci­sion to step in and help take care of mom. I knew I had the train­ing to be a care­giv­er and want­ed to do what I could.

Although it was a dif­fi­cult finan­cial deci­sion, I was will­ing to sus­pend my finan­cial oblig­a­tions and mom and I made arrange­ments. Over the next sev­er­al weeks I lit­er­al­ly moved back home to be with mom ²⁴⁄₇.

While I had the care­giv­ing back­ground and train­ing, I didn’t real­ize how much more it is to care for a fam­i­ly mem­ber. When care­giv­ing for a client, you have to be able to have com­pas­sion, kind­ness and respect for their dig­ni­ty. When car­ing for a fam­i­ly mem­ber, there’s a dif­fer­ent lev­el of con­cern that shows up. I real­ized mom’s out­come was the most impor­tant thing. I love my mom. She’s always been a very strong, resilient, inde­pen­dent, over­ly lov­ing, car­ing woman. She has always been my rock, my cheer­leader, my inspi­ra­tion, and there’s more love in my heart than I could ever explain.

Chemo has knocked her down a lot. She is weak most of the time and has gone through so many chal­lenges. Always a hap­py fun lady, she’s strug­gling to stay pos­i­tive and inspired every day. I’m at her side most of the day to make sure she’s get­ting the best care pos­si­ble. I strug­gle as a daugh­ter who just wants to see mom through this chal­lenge. Hav­ing lost a won­der­ful father dur­ing COVID-19, I can’t bear the thought of los­ing the most won­der­ful woman in my life. So I keep going, check­ing every­thing mom needs to make sure she can get through her jour­ney. Some­times it’s just telling her it’s going to be alright, some­times say­ing com­fort­ing, inspi­ra­tional phras­es, most of the time it’s just hold­ing her hand or sit­ting next to her just to be together.

Through this jour­ney I have real­ized the dif­fer­ence between being a care­giv­er for a client and car­ing for some­one you love with all your heart. Only spe­cial peo­ple have the nec­es­sary skill and com­pas­sion to be a care­giv­er. But a bond between a fam­i­ly mem­ber is on a whole oth­er level. 

Around the clock care­giv­ing has more chal­lenges than a shift with a client. For me, it’s just what we need as a fam­i­ly to see mom through her dark days and dai­ly chal­lenges. I would glad­ly do this, and am proud that I have the abil­i­ty, skill, and knowl­edge to be with her when she needs me the most.

My mom was for­tu­nate to get assis­tance from Ken­neth Young Cen­ter. Although an expe­ri­enced care­giv­er, I was unaware of the ser­vices res­i­dents could get from such an agency. While the Home Deliv­ered Meals were help­ful with nutri­tion needs, oth­er ser­vices ben­e­fit­ed mom. But for me, I became aware of sup­port groups designed specif­i­cal­ly for care­givers. I learned oth­ers were deal­ing with obsta­cles and chal­lenges in their care­giv­ing roles. I learned there was some­where where I could voice my own dif­fi­cul­ties car­ing for a loved one. I learned there were oth­ers who would give me the sup­port I need­ed. There are always frus­tra­tions deal­ing with loved ones but you must nev­er lay your prob­lems on their shoul­ders. They are going through much more than any­one can endure some­times. No need to cause more aggra­va­tion. So the sup­port group became my out­let, my place to have a voice, a place where oth­ers total­ly under­stood what I was going through. I am very glad to have the sup­port of Ken­neth Young Cen­ter’s Care­giv­er Sup­port Group.

I cel­e­brate all care­givers for the com­pas­sion, strength, skill, and train­ing need­ed for this spe­cial career. Con­grats to all who are in this pro­fes­sion. There’s a spe­cial place in heav­en for these care­givers who have giv­en sym­pa­thy, hope, kind­ness to those in their care.

Care­giv­ing as a 24 Hour Responsibility

Care­giv­ing is an incred­i­bly chal­leng­ing jour­ney, and in most instances, you feel under-appre­ci­at­ed on a dai­ly basis. You give up hav­ing your own indi­vid­ual life, put goals and rela­tion­ships on the back burn­er, so you can pri­or­i­tize and focus on your loved one. This is a 24×7 job, you sel­dom do some­thing for your­self and only indi­vid­u­als who are in the same posi­tion can even relate. 

How­ev­er, I know this won’t always be the sit­u­a­tion and I will nev­er regret tak­ing care of my moth­er. This com­mit­ment demon­strates uncon­di­tion­al love like no oth­er and I choose to look at it as a ben­e­fit that I can do this for her, as I know the sac­ri­fices she made for me through­out her life. 

For me, tak­ing advan­tage of var­i­ous Ken­neth Young Cen­ter offer­ings, I’ve been able to gain the tools I need to take care of not only my mom, but my well being. I’m incred­i­bly grate­ful to work with an expe­ri­enced social work­er who under­stands what this com­mit­ment entails and the tri­als and tribu­la­tions that come with it. Our month­ly Mem­o­ry Café event offers a fun out­ing for our loved ones where they can social­ize and enjoy some great enter­tain­ment and also work on a craft. Meet­ing and col­lab­o­rat­ing with two oth­er care­givers who can under­stand my chal­lenges is a huge ben­e­fit of attend­ing the month­ly sup­port group too. 

Being a care­giv­er can be emo­tion­al­ly, phys­i­cal­ly, and men­tal­ly exhaust­ing. It’s heart­break­ing, sad, scary, lone­ly, and reward­ing at the same time. You lose your per­son­al iden­ti­ty and ques­tion on a dai­ly basis if you’re doing the right thing. So if you know a care­giv­er, give them a break, show some empa­thy, and acknowl­edge the remark­able work they are doing. It’s prob­a­bly the hard­est job to help a loved one dur­ing their final chap­ter of their life journey.

-Lisa

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