Coping means “coming to terms with” and that is exactly what we must do when we live with Kennedy’s Disease. I have written several articles on how to cope or accept Kennedy’s Disease. It is such an interesting subject, however, that we can always use more help.
Today I am calling upon Dr. Phil for help and he has some interesting comments on the subject (http://www.drphil.com/articles/article/30/). In his article below I have noted several points that I consider important.
Coping With Disease
When someone in the family gets seriously ill, he/she might be the one infected, but the entire family is affected. Whether it's disease or chronic pain that has changed your relationship with a loved one, Dr. Phil has advice on how to cope:
- Don't let the disease become your identity (This is a great way to say this)
You can manage an illness, or it can manage you. Are you becoming a full-time patient instead of a human being with a disease to manage? Investigate every avenue of rehabilitation and create the highest quality of life. Don't let the limitations of a disease become as handy as the pocket on your shirt. Do 100 percent of what you can do.
- Communicate (A couple of times a month I receive emails from care givers and family members asking how they can get their loved one to open up)
If you don't talk about your feelings or how a disease is affecting the relationship, problems will only grow and eat away at you. Talk through the fear. Don't keep a stiff upper lip.
Direct your frustration at the disease, not at the victim. If the circumstances are making you feel angry and resentful, you may have a legitimate point. But if those feelings drive your behavior, your point will be lost. Yelling at someone or being overly critical doesn't help him become his better self.
- Accept your feelings (This is an important part of the ‘acceptance’ process)
Know that you are not a crummy person if you don't feel sympathetic and compassionate at all times toward the person with a chronic illness. The toll of the illness goes beyond the infected person.
- Redefine the relationship (A good point and one that is often overlooked)
Disease may force a family to adapt into different roles (the caretaker of the family becoming the one who needs to be taken care of, etc.), so you may need to come to a new understanding of what is "normal."
- Set realistic guidelines
Outline what can be expected from family members as well as from the person who is ill. If you're sick, you can't be expected to do some of the things you used to do. If you've offered to help, you can't be expected to abandon your children and job because of it. Outlining reasonable expectations will prevent feelings of resentment on both sides.
- Confront your own emotions (This goes well with the ‘Communicate’ point above)
If you are ill-equipped to deal with your feelings, you may grow cold or withdrawn. Hiding your feelings can only cover up the raw pain for so long -- and can also prevent you from being close to your loved one. Remember, monsters live in the dark.
- Don't force children to deal with adult issues (The transition has to be comfortable and designed for the child’s age)
Young kids shouldn't be expected to go from being a child to the caretaker of a seriously ill parent. If a child has taken on the role of caretaker and now can't go back to being a kid again, you need to him/her them re-learn how to have fun, be silly and play again.