Being a caregiver to someone who has a chronic illness can be a difficult role. You want more than anything for your loved one to be healthy again but there is nothing you can do to make that happen. You may feel helpless and frustrated and unsure of what you can do to help your loved one. Here are a few “do’s” and “do not’s”:
1. DO listen – Sometimes your loved one just needs you to listen without offering advice or telling them what you think they should or should not be doing. Having a chronic illness can be frustrating and sometimes they will need to just vent. If there is something they are or are not doing that is concerning you, think about talking to their doctor about it to see what they think. If the doctor agrees with you, have the doctor talk to your loved one about it. As unfair as it may seem medical advice will mean more coming from their doctor than coming from you. They need you to act as their support system, not as their doctor.
2. DO NOT neglect your needs – Acting as a caregiver to someone who is chronically ill can be all consuming at times. Even if your loved one is feeling better at the moment, you may still be thinking about their illness. I can’t express how important it is for caregivers to take care of themselves. You cannot be helpful to your loved one if you are stressed out, tired, overwhelmed, or upset. Believe me, your loved one would rather you take a break in order to do what you need to do for yourself, whether it be going to the gym or spending an evening with friends, if it is going to help you to take better care of them.
3. DO ask what they need – Sometimes it’s hard to tell what other people need unless you ask. One day they may need something completely different than the next. It is best to talk with your loved one about what their needs are so you are not in the dark.
4. DO educate yourself about their illness – It is really important for you, as well as your loved one, to be educated about their illness. That way, if they are not feeling up to it you can be their advocate. Read books or articles about their illness, talk to others who suffer from the same illness or ask their doctor questions.
5. DO NOT constantly ask how they are doing – Every day is a reminder to your loved one that they are sick. People who have a chronic illness usually do whatever they can to make themselves feel more “normal”, whether it be doing as much as they can when they feel well or just trying not to think about it when they don’t feel so well. By constantly asking how they are doing, you are just giving them another reminder that they are sick. I know this can be difficult for a caregiver because all you want is to hear your loved one say they feel okay. One thing you can do is have a conversation with your loved one about how many times per day, per week, per month it is okay for you to ask them how they are doing. Everyone’s different. Some may not mind it so much. For me, I absolutely hated it when people were constantly asking me how I was doing.
Is there anything else you can think of that should be on the "do" and "do not" list?