Thursday, March 7, 2013

Considering Caregivers Amidst the Fears of Chronic Illness

I was looking up articles on "fear" in the context of" chronic illness" and came across a very useful short piece listing 8 fears that people who live with chronic illness may face. It's written from the point of view of helping the caregiver understand what the patient is feeling, while acknowledging that caregivers also suffer. Caregivers, whether they are parents, spouses or children, other family members or friends, have their own feelings and difficulties in dealing with the illness of someone they love and care for, and relationships are often deeply affected by changes in well being. The challenge is to find a way to live and function such that the impact on caregivers is recognized and dealt with, and at the same time continue to give the chronically ill the help they need. It's a tall order. All the same, it must be consciously undertaken so that collateral damage from life with chronic illness can be minimized, and the unfortunate and unexpected intrusion of chronic illness into one life doesn't claim other victims as well.

"Helping Yourself Help Others"
Even as you (the caregiver) are struggling with your own problems and feelings, you may find that the one you are caring for seems moody, withdrawn, depressed, or perhaps - even more unsettling - unnaturally cheerful.  It can help you to cope with your position if you have a better understanding of what your loved one is experiencing.

People facing a chronic illness suffer great emotional turmoil.  The prospect of being sick and a burden to someone else, possible of facing death, can be devastating.

In their book "Taking Charge: Overcoming the Challenges of Long-Term Illness", Irene Pollin, a clinical social worker who specializes in helping chronically ill individuals and their families and Susan K. Golant, co-author of Helping Yourself Help Others, delineate eight fears that people coping with chronic illness usually face.  These are borne out by the respondents to the RCI survey:

1.  The fear of loss of control: Your family members may fear that they have lost control over their life because of their illness.  They may have made plans for their future, which are put into question.  They do not know from one day to the next how they will feel or whether they will ever be able to regain control of their life.

2.  The fear of changed self image:  Sometimes the one who is ill no longer views their self as the same person.  They feel less confident, no longer attractive, physically weaker, and somehow damaged.  Maybe they lost their fertility/virility, their gracefulness, their ability to earn a living or their willingness to believe in God, and see themselves as defective and unlovable.

3.  The fear of dependency:  Once the reality of the illness has settled in and the one you are caring for recognizes that their condition is not going away, they, too, fear their loss of independence.  Hating to show any vulnerability, they may have difficulty accepting outside help, or, giving in to their fears, they may become overly needy and dependent on you.   One of the respondents to the CARE NET study said it was becoming more and more difficult for her to care for her chronically ill daughter because the daughter expected everything to be done for her.

4.  The fear of stigma:   Another of the respondents commented "I share some with friends, but friends 'pull back' due to the illness."  The one you are caring for may become frightened that others will distance themselves from them once they know they are sick, as if illness brought with it some sort of shame.  If they are disfigured in some way or if the illness causes some apparent physical disability - an uneven gait, a drooping lip, they could be afraid that others will point and stare, causing them to withdraw into the confines of home.

5.  The fear of abandonment:  As a natural part of infancy, babies fear that their parents won't be available or loving when they need them.  They cry when parents leave the room.  These feelings stay within us and actually become intensified with an illness.  Even if yours is the most affectionate and giving of families, your ill family member may grow frightened that you will tire of the drudgery that the constant care involves.  This is normal and universal anxiety stems from the disease threatening their personal sense of security.

6.  The fear of expressing anger: When those suffering realize that they have done everything possible, yet can "never" be cured of their disease, they may become intensely angry.  It's easy to see how a chronic condition could give rise to lots of anger.  Anger is a consequence of frustration.  Yet many people are afraid to express anger because they have been taught that this is an unacceptable emotion or because they're afraid of driving others away with their rage.  Or they're afraid of flying out of control.  Anger kept inside can cause depression and a lack of energy.

7.  The fear of isolation:  Physical, social, and emotional isolation can result from a chronic illness.  Ill ones, physically confined, lose the opportunity to socialize with old friends and often find themselves withdrawing from them.  The fear of isolation usually doesn't occur immediately after their diagnosis.  It takes time for ill ones to pull away from society or to recognize that friends, family, acquaintances, and co workers are avoiding them.

8.  The fear of death: Although everyone who is diagnosed with a serious chronic illness fears death, Irene Pollin say that, ironically, death is usually not what they fear the most.  Rather, their greatest fears revolve around how they will live with the illness until they die.

As I read these fears I recognized many of them in myself. Yes, I suffer great emotional turmoil. Yes, I do feel depressed, angry and fearful of many things. These fears seem almost legitimized in those who live with chronic illness, because it's their experience of the illness, it's real to them and their lives are changed by it. I often think of my life before I was diagnosed with Crohn's and I remember how carefree it was. But my thoughts also go often to those I live with, especially to my dear husband whose own needs, fears and frustrations must find a way to be expressed and considered and dealt with along with my own. I often wonder about caregivers who look after those with long term disability and illness. I wonder who cares for the caregivers. I don't think anybody really does. I do think somebody ought to, caregivers need love and support and help too. 

I wonder what the fears of caregivers are, and if the chronically ill can have the grace to accept that their illness affects others and that guilt is not the way to deal with the needs of caregivers. Don't feel guilt stricken that your loved ones suffer because you suffer. Don't make them feel guilty because they may choose to deal with their suffering in ways that takes them away from you. Don't allow guilt to ruin relationships. Find the grace to let your caregivers go, give them space to breathe and live. Learn to cope with chronic illness on your own as far as possible. It might be impossible for some to manage given the extent of their disability, but above all, be kind.  Kind to yourself as a patient, and kind to your caregiver(s) whoever they are. Kindness takes the sting out of so much pain. 

The first step is to recognize and remember that others suffer along with us. It's not all about you. Find the inner strength to deal with your own illness, and bear the burdens of those who care for you too... I'm going to try harder myself. Wish me luck!

Thanks for reading.