Some Thoughts for Caregivers

It occurred to me in speaking with a friend (who also deals with a chronic health challenge) that Fantastic*Aplastic should also be a resource for the people who love and care for a person with an illness. If you are such a person, I salute you.

"Caregiver" can mean many things. Whether the parent of a small child with a disease, the partner of someone facing a disease, or a friend or family member, each of you no doubt has experienced the full range of emotions that go with caring for, worrying about, and sometimes being irritated by your loved one. "Caregiver" does not have to mean that you are bathing and feeding someone. More often than not, it simply means that your life contains challenges and fears and frustrations as well as small joys that it would not were you not caring for and loving someone with a disease.

Just as the person with the disease must allow herself to grieve her pre-diagnosis life, dreams and assumptions, so must the caregiver. Many times the caregiver does not allow him or herself to feel that grief because it engenders feelings of anger or disappointment that seem to border on disloyalty to your loved one. I have no clinical psychological experience or qualifications (so bring a large grain of salt to this reading), but based on personal experience I would hazard a guess that allowing yourself to feel that grief is a necessary step to being the best partner, parent, friend, brother that you can be to the person who needs you. Until you can grieve The Life You Imagined out of existence and come to look at The Life You Have as equally exciting and valid, you will be unable to bring the right level of genuine positivity and sense of possibility to your and your partner's/child's/sister's life.

It is okay to be sad and mad that your child's life will be harder than you dreamed when you held his 6 pound 3 ounce newly-born person in your arms. It is okay to be sad and mad that the marriage you envisioned with spur-of-the-moment trips to Bangkok and Fiji will have to involve trips to places with clean water and malaria-free environments. It is okay to be sad and mad that the perpetually-upbeat person you married or knew when you were a kid now has bad days where you can't seem to reach him and make it all better. On that note, for parents, it is absolutely okay to be sad and mad that there are indeed some things you cannot make better for your child. Every parent figures that out; you have simply been forced to realize it sooner.

Every diagnosis precipitates a reordering of priorities, a realization that some things will never happen, that some things we don't want to happen will, that our lives as of this moment will never be the same. It can't be sugarcoated, nor can it be avoided. Those who attempt to avoid the realignment find themselves depressed and resentful, but unable to express their feelings because they seem to blame the victim for the situation, thereby leading to further depression and resentment.

If you can, find a way to talk about these feelings, be it in a support group of with clergy or friends. For partners, sometimes the greatest strength you can derive is from each other; don't assume you can't tell your partner how you are feeling. It may just give them permission to express their own fears and disappointment to you. I predict that your marriage will be stronger and more fulfilling for having had these conversations. The person with Aplastic (or whatever) can stop feeling like a total failure and factory reject, and you can stop feeling like the mere fact of being sad at the situation is somehow a mark of disloyalty to your loved one.

In relationships even without a health issue, sometimes the greatest challenge and fear can be admitting vulnerability and/or dependence on someone. It is the reason so many relationships die; because one or both people cannot bear to be their authentic self in front of another without fearing rejection, ie, if you know too much about me, you will not possibly be able to love me. If I show you my authentic self, you will then have the power to hurt me. All the more reason why caregivers and partners absolutely have to bare their souls about this stuff. Because you ARE vulnerable, you DO need someone, you CAN'T always do it on your own. Both of you.

For parents, the situation is a little bit different. Obviously you don't want to burden your kid with your fears, and in fact, I would caution against it. Certainly let the child know that it is okay for him to be frightened and sad and angry and frustrated; let him know that he doesn't have to pretend to be happy in order to not worry you (because even little kids will hold back if they perceive that something might hurt mommy). But you, dear parent, will have to lean on your partner or friends or a support group for strength, because your child will need you to maintain the illusion that mommy and daddy are not frightened for him. Even if you are scared spitless, your particular parental challenge will be making your child believe that while he can be as scared as he needs to be, you are 100% confident that he will be fine. Children need certainty, especially from their parents. He will have enough doubt for all of you; you must be the rock on which he stands. Express any fearful and angry feelings you need to, just not to your child.

Having said all that, it is important to emphasize that all is not lost. Yes, life is different than you imagined. But does it have to be worse? Only if you make it that way. Grieve The Life you Imagined so that you can embrace The Life You Have. There remains limitless joy, boundless happiness, infinite love, tremendous possibility even after a diagnosis. You simply must open your eyes to see the joy, happiness, love and possibility where they exist. They may not look like what you used to think they'd look like, but they are there. The real tragedy is not the diagnosis and its challenges, it is the failure to see all of life's wonderful possibilities that still exist amidst the grief.