When living with a chronic illness, we encounter "angels." They take different forms: Doctors, nurses, family, friends and caregivers.
Sickness makes strong people unaccustomedly dependent on the kindness and good intentions of others. This is usually a task of love and devotion. Caregivers are family and friends who stand by us as we face chronic illness or disability or even death.
When we as patients are diagnosed with a disease or chronic illness, our whole life becomes centered on dealing with new emotions, loss of our dreams and how to cope with day to day living. Our caregivers, if they are family members, cope with these same losses as they relate to their own dreams, hopes, emotions and coping with day to day living as well while trying to juggle a career, family and responsibilities for another person.
Caregivers have needs just like their patients and loved ones. Their needs and feelings are deeply affected by their loved ones illness.
Caregivers have their own needs for intimacy, companionship and happiness that are threatened by the illness of a loved one. If the caregiver is your spouse, he/she still needs an intimate relationship with you, yet may have a fear of hurting you or causing you fatigue. They need their spouse to trust them and to accept their love and admiration.
Caregivers have the need for understanding and compassion when they sick or depressed.
Brian suffers from irritable bowel syndrome due to the stress of worrying about me. There are days when he complains about his pain. Instead of listening and understanding, I attack him. "At lease you know you will feel better tomorrow." Of course he feels badly for me. And he tries to understand. His needs are often put aside for my needs, as is common with all caregivers. Or his needs are met with hostility, anger and self pity on my part rather than understanding and compassion.
Caregivers need to know that we as patients are doing what we can to take care of ourselves There are days when I feel decent enough to get out and do some chores or run some errands. I always end up overdoing it because I want to do as much as possible while I feel better. Inevitably, I will be sick in bed the next few days.
Brian will alternate between irritation at me for overdoing because he knows it will cause me to be sick and tired, and feelings of happiness because I had a good day. We do discuss this issue and he understands my need to take the risk of feeling tired and sick tomorrow in order to enjoy today. Unfortunately, this is at the expense of his need to know I am taking care of myself.
Caregivers need their loved ones to be hopeful and optimistic.
Caregivers need to get enough rest. Many caregivers will suffer from fatigue because they're holding down a job, running one or more households and caring for additional people.
Caregivers need to feel they are not alone. They need support and understanding.
Caregivers need time not to focus on or talk about their loved ones illness.
Communication is important. Share your feelings. Denying your feelings can make them fester into something much more. Chances are, your loved one shares a lot of the same feelings as you the caregiver. By admitting and accepting your feelings, you can begin to develop new ways of coping and meeting your needs.
There are many emotions caregivers experience:
Resentment because they're always attending to someone else's needs and not meeting their own. They may resent their life turned upside down.
Grief, not caused by a loved one's death, but by the changes in the caregivers life and their loved one's way of life.
Anger comes in many forms. Anger that they are thrown into the position of caregiver. Anger at downward changes in their loved one's condition. Anger and frustration at the financial consequences experienced if there is a loss of income, and health care costs. Anger at having feelings of anger. Anger that no one seems to notice how overwhelming the caregivers job can be. Anger at loss of control over the situation.
Shock. The initial shock of a loved one's diagnosis.
Fear and uncertainty of what the future will bring.
Anxiety because of financial obligations. Dealing with insurance forms and medical bills can easily take their toll on the caregiver.
Hopelessness and frustration because of the difficulties of getting things done and coping with the day to day care of a loved one.
Guilt. Why did it happen to a loved one and not to us. Guilt over being healthy. I as a patient have days of feeling badly for my caregiver and husband, Brian. I feel guilt that he has to go off to work in the morning, leaving me in a nice warm bed, only to come hope that evening after a hard day at work, to find me still in bed. Yet Brian has feelings of guilt that he is able to leave the house and get away from the illness within its walls.
Stress over loss of leisure time and the ability to pursue personal goals.
Depression. All of these feelings can cause depression.
While we cannot relieve a loved ones pain or alter the course of their disease, we can offer their caregiver the gift of time, to listen to them and then to comfort.
We as supporting family and friends need to realize there are not pat answers to the needs and emotions that caregivers face. Refrain from offering advice.
There are things caregivers can do to create a better quality of life for themselves.
1. do not hesitate to ask for help. Whether it be some time off from their role as caregiver or assistance in their day to day role. Accept offers of help if given as well.
2. Join a support group. They provide information about, medications, treatments, nutrition, legal issues, news on new treatments, or just somewhere to relieve your frustrations, or get answers to questions from others who have walked in the same shoes.
3. Take care of yourself. Get your rest, see your doctor when indicated and spend some time on you.
4. Educate yourself about the illness. With education comes understanding.
5. Let yourself feel your emotions. Realize they are normal.
6. When facing the fear of the future, realize that no one can predict the future. Direct your thoughts to enjoy the present over which we do have some control.
7. Take charge of your life. do not let your loved ones illness or disability take center stage.
8. Dare to dream new dreams. Your old dreams may have changed so create new dreams!
9. Love, honor and value yourself. You are doing an important job so pat yourself on the back! You are extra ordinary, truly an angel!
TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses.
We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: