I have a ques­tion

There are so many ques­tions that will arise through­out the jour­ney, for all in­volved. It is im­pos­si­ble to knowwhat to ask. Here are some an­swers pro­vided in con­sul­ta­tion with can­cer sur­vivors, care­givers, and pro­fes­sion­als.

C.A.R.E. - - Cancer -

Q. I know my care­giver and friends mean well, but I want to do things on my own. How can I do this? ~“Strug­gling with In­de­pen­dence”

A. Talk with them and be spe­cific about which ac­tiv­i­ties you en­joy do­ing and need to do to main­tain nor­malcy and dig­nity. Care­givers of­ten for­get to ask the pa­tient what they want. Be re­cep­tive to their feed­back if some of those chores are detri­men­tal to your health. Break down tasks and com­pro­mise on what they will help you with and what you can and will con­tinue to do. It’s okay to want in­de­pen­dence, but it is also nec­es­sary to rec­og­nize that some tasks re­quire help.

Q. My fa­ther and I are try­ing to take care ofmy mother, but we keep fight­ing over who does what and what is best for her. What should we do? ~“Clash­ing Care­givers”

A. Some peo­ple have found it to be use­ful to as­sign a co­or­di­na­tor who or­ga­nizes the con­tri­bu­tions. An ex­cel­lent re­source is avail­able at www.sharethe­care.org. In “To­gether,” my care­givers group, we iden­tify the “quar­ter­back,” the one call­ing “the plays.” Of­ten this role shifts to dif­fer­ent peo­ple as the needs of the pa­tient changes. Also, find the best per­son for each task. For ex­am­ple, don’t as­sign some­one to drive when they don’t knowthe area or are a ter­ri­ble driver.

Q. My­wife is chang­ing- phys­i­cally and men­tally. It is hard for us to in­ter­act like we used to. How can I in­ter­nally re­solve this? ~ “Help­less Hus­band”

A. We call this the “New Nor­mal.” It will take time to ad­just to th­ese changes and bet­ter to rec­og­nize them than to pre­tend they are not there. She is self­con­scious about them as well. Talk with her, find out how she feels now, rem­i­nisce about the good times you’ve had, and try to have qual­ity time to­gether.

Q. My friend won’t re­turn my phone calls. I know she is deal­ing with her sis­ter’s can­cer. I don’t know how to truly be there for her or what to say. How can this sit­u­a­tion not af­fect our friend­ship neg­a­tively? ~ “Friend at a loss”

A. A dif­fi­cult sit­u­a­tion re­quires dif­fer­ent re­sponses. Know that your friend wishes she could be as re­spon­sive to you as she used to be. In fact, it af­fects her more than you think. Your friend­ship will change, and how “present” you are for her dur­ing this time will be a key part of your on­go­ing friend­ship. Stay pa­tient with the dis­en­gage­ment, but don’t stop reach­ing out. She might not re­spond but your ef­forts will make a pos­i­tive dif­fer­ence in your friend­ship. Whether it be dur­ing this time, or af­ter a death of some­one’s loved one, know that it is fine to say “I am not sure how to be there for you and of­ten don’t knowwhat to say. Please let me knowwhat you need.” A very good book for help­ing in this sit­u­a­tion is “When Life Be­comes Pre­cious: The Es­sen­tial Guide for Pa­tients, Loved Ones, and Friends of Those Fac­ing Se­ri­ous Ill­nesses.” by Elise Needell Bab­cock.

Q. I’m frus­trated and hurt be­cause my sis­ter seems dis­en­gaged frommy fa­ther’s di­ag­no­sis and won’t talk tome about it. How do I deal with her? ~ “Sad­dened Sib­ling”

A. Try to re­mem­ber that ev­ery­one deals with ill­ness dif­fer­ently. This is a time to band to­gether, so try not to hold her cop­ing mech­a­nism of de­nial against her. Have a con­ver­sa­tion about how you both will ap­proach com­mu­ni­cat­ing about your mother’s di­ag­no­sis in the fu­ture, and try to com­pro­mise on some­thing that you both feel com­fort­able with. It may be nec­es­sary to meet with a pro­fes­sional to fa­cil­i­tate com­mu­ni­ca­tion. Put your en­ergy into find­ing best ways for YOU to cope.

Q. Ev­ery time we have a test or scan com­ing up, the house gets re­ally tense andwe all start to fight. Is it the ap­point­ments or what is go­ing on? How can we pre­vent this from hap­pen­ing in the fu­ture? ~“Frus­trated Fam­ily”

A. It is very nat­u­ral to an­tic­i­pate and worry about the out­come of a test or scan. To some de­gree, this anx­i­ety will al­ways be there. The pa­tient and fam­ily al­ways re­mem­ber the first time they had the unan­tic­i­pated bad news. Try to in­crease your “stur­di­ness” so that you are bet­ter able to cope with an up­com­ing test and re­sults. As a fam­ily, rec­og­nize this time may be tense. Ev­ery­one may re­spond dif­fer­ently in this sit­u­a­tion.

Q. It is re­ally hard for me to let my fam­ily know the fi­nan­cial strug­gles we are in. I want to take care of it all, but I am tired. How do I man­age the fi­nances and com­mu­ni­cate the re­al­ity with my fam­ily with­out caus­ing them alarm or feel­ing em­bar­rassed? I just want tomake sure they are taken care of. ~ “Protective Pa­tient”

A. This is the time that you need your fam­ily to be “in the know.” Whether it is re­gard­ing your health or the fi­nances, it is cru­cial that you com­mu­ni­cate with them and ask for what you need. The best way to take care of your­self and the fam­ily is to bring them into your con­fi­dence, and in that way you can work out th­ese is­sues to­gether as a fam­ily. It doesn’t need to be some­thing you take on alone. Re­mem­ber that no one on the ill­ness con­tin­uum can han­dle ev­ery­thing. Share a lit­tle bit at a time if that makes this trans­parency more man­age­able.

Q. One ofmy em­ploy­ees toldme they have can­cer. I no­tice their mood swings from day to day and see when their cur­rent sit­u­a­tion is af­fect­ing them. I want to be there for them but don’t want to pry. How can I keep our re­la­tion­ship pro­fes­sional, while still let­ting them know I care? ~ “Con­cerned Boss”

A. You are in a unique role. You have the op­por­tu­nity to get the em­ployee’s mind off of ill­ness and fo­cus on the fu­ture. Uti­lize your po­si­tion by find­ing out what tasks and projects they en­joy. Know that it is okay and will be ap­pre­ci­ated by your em­ployee for you to ask how they are do­ing. Those living with can­cer and oth­ers af­fected by a di­ag­no­sis (care­giver) feel cared for when this hap­pens in a gen­uine way. If you ever see that they change the topic, then drop it. If they talk about it, en­gage with them. They may have in­se­cu­rity about job per­for­mance or the fu­ture of the po­si­tion, so give pos­i­tive feed­back when you can, as well.

Q. My mother just re­cently passed away from can­cer. I’m hav­ing a hard time cop­ing with it. My friends are try­ing to help but what­ever they say doesn’t makeme feel bet­ter. ~ “Griev­ing and Search­ing”

A. Deal­ing with the loss of a loved one is never easy. Re­gard­less of how it hap­pens, one can never be truly pre­pared for it. Time won’t elim­i­nate your hurt, but it may help you to heal a bit. Know that your friends might not know how to help, and truth be told, there won’t be things that they can do to “fix” your sit­u­a­tion. Help them help you by let­ting them knowwhat you need at any given time. It may be a hug, space, a con­ver­sa­tion, or ac­tiv­ity of retreat. There is no right or wrong way to feel. We don’t “get over” loss, we learn how to adapt to it. Al­low your­self to mourn and share your feel­ings with oth­ers, so that they best know how to com­fort you. A grief sup­port group is of­ten help­ful be­cause those in the group un­der­stand your feel­ings.

Q. I be­came a care­giver six months ago, yet still face some of the same fears and is­sues that oc­curred shortly af­termy loved one’s di­ag­no­sis. I feel like I should have mas­tered this ex­pe­ri­ence by now, and not get so af­fected. How do I stop kick­ing my­self for feel­ing this way? ~ “Dis­ap­pointed Care­giver”

A. You are do­ing the best you can, and the myr­iad of feel­ings con­tin­u­ally re­oc­curs. Can­cer is cyclic in how it af­fects peo­ple, and the dif­fer­ent stages of can­cer bring dif­fer­ent emo­tional re­sponses. It’s im­por­tant to fo­cus on who you are car­ing for and not put your­self down. The pa­tient needs your strength, and crit­i­ciz­ing your­self over your per­for­mance will wear you down. Self- care is very im­por­tant for the care­giver be­cause you have to be healthy to care for the pa­tient. Call one of your pos­i­tive friends or fam­ily mem­bers to give you a morale boost. Join a care­giver’s sup­port group where oth­ers un­der­stand your feel­ings and will give you much needed sup­port. Pas­sages in Care­giv­ing by Gail Sheehy and No Saints Around Here: A Care­giver’s Days by Su­san Allen Toth are good re­sources.

Q. I have been in re­mis­sion for about five years now. My im­mune sys­tem is ter­ri­ble, andmy body has not fully re­cov­ered from the chemo­ther­apy I had. Is this nor­mal? Will I ever have the same en­ergy that I used to? ~ “Cu­ri­ous Can­cer Sur­vivor”

A. The way treat­ment af­fects peo­ple, varies from in­di­vid­ual to in­di­vid­ual. Some peo­ple are able to re­turn to their “nor­mal” pre- can­cer en­ergy and feel­ings. How­ever, in some cases, the ef­fects of treat­ment might not ever go away. Ev­ery body reacts dif­fer­ently. It’s im­por­tant to keep your spir­its up and con­tinue to spend your daily life as healthy as pos­si­ble, to max­i­mize how you feel ev­ery sin­gle day from this point for­ward. Talk to your on­col­o­gist and pri­mary care physi­cian about your con­cerns.

*Rhona S. Levine, Li­censed Mar­riage and Fam­ily Ther­a­pist

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