* Ken: I wish I could say I do a great job at this, but I would be lying. I always seek to focus on the value she brings to the family because of who she is, not because of what she does.
* Tim: When I do see my wife, I let her know that she is a strong person and that she will beat this disease. Also, that the children, as well as myself love and support her.
* Bud: By talking about the positives in our lives and just paying a little special attention to my wife.
* Robert: I always tell her how important she is and support her in her job and all that is meaningful to her. Sometimes I tell her with a gift.
* Rex: I try to help her remember that her real strengths cannot be diminished by illness. While she is a gifted communicator, who has to watch her outward abilities gradually wan, her passion and her gift to communicate are not being hampered. It is more of an igniting of her life message than an extinguishing of it.
* David: I will kiss her and hold her and tell her that I love her. I will tell her that I wished that I could do something to make her well, but I cannot.
* Joel: I try to emphasize how important the everyday things that she takes on are. I affirm her talents in her endeavors. I try to show her that I find her attractive and physically desirable.
9.) What are your greatest frustrations in coping with your wife's illness?
* Ken: Her unwillingness to talk about how she is feeling at the moment, how the illness affects her psychologically, and my lack of understanding of that dimension of her illness.
* Tim: Not being able to help when she is in pain. I hate to see her in such agony.
* Bud: My inability to remove the pain.
* Robert: The greatest frustration comes when she isn't feeling like herself and I have done all that I can do to help and it still isn't always enough.
* Joel: That I often can't do anything to directly alleviate the pain and damage the illness causes. When people think they know how she should treat and deal with her illness. When illness can limit physical intimacy.
10.) How do you cope with these frustrations?
* Ken: Sometimes I pray for patience. Sometimes I ignore the frustrations. Sometimes I get angry. Sometimes I convince her to talk about what is going on inside of her. Other times I determine it is best to walk away from the situation for awhile.
* Tim: It's hard, but I tell myself that I am not a doctor and that I need to be as supportive as I can. I can do whatever she needs to help.
* Bud: Talk about it and pray.
* Robert: I retreat someplace, off by myself and pray or just focus on what I can do to improve on one thing or another. It helps put things into perspective.
* Rex: I try to talk them out with her. Sometimes I slip them into conversation with other people who are coping with chronic illness and their caregivers. If my reasoning is healthy, sharing my feelings in the presence of others gives credence to my feelings and encourage them to express theirs.
* David: I cope through daily prayer, scripture reading, and the grace that God gives his Church through the sacraments. The daily Mass is particularly beneficial in coping with my frustrations. To receive the actual Body and Blood of Christ on a daily basis is a tremendous source of supernatural grace. I am also seeing a psychologist and a psychiatrist about the effect that my wife's illness has on my behavioral problem.
* Joel: I have a lot of faith in her decisions regarding treatment, and I recognize that her doctors are good, caring and qualified. We both maintain confidence in her treatment decisions. We have faith that God is always working things out His way for His purpose, which we trust.
11.) What do you miss most about life before the illness entered into it?
* Ken: Her happiness, joy and excitement about life.
* Tim: Her smile; her optimistic outlook on life in general
* Bud: My youth...but that would have been gone anyway.
* Robert: Really, not much. This is most likely because she has her health, with some limitations, but she is able to live a normal life (except when fatigue sets in).
* Rex: I miss a measure of spontaneity and variety that we had with better health. Many things have lost their appeal because, for instance, we can't guarantee the weather or that the energy we have will reach all the way to where we want to go and back again. Chronic illness has limited our options, especially in recreation and leisure.
* David: A healthy sex life.
* Joel: The spontaneity of being able to go do things and not be concerned about walking distances and physical activity or staying out late. We can't be as carefree when physically intimate. I have to be careful not to hurt her.
12.) Do you share these feelings with your wife? Why or why not?
*Ken: No, not often. I don't see the purpose of reminding her of the person she once was when she can no longer be that person.
* Tim: No. There are days when I can talk with my wife, but there are more days when I can tell she'd rather I wasn't around her.
* Bud: Yes. She could tell anyway.
* Robert: We can talk about almost anything.
* Rex: I don't share my feelings as well as I try to enter into hers. I am probably wimping out here, but I view my losses in the shadow of her losses. Hers' are more prominent, more substantial. I want her to know she's worth the losses I endure.
* David: Yes. She knows about my problem and my prescription.
* Joel: I don't share these feelings because they are not strong feelings. Our dating lifestyle was never physical demanding-all is certainly not lost. I appreciate what we can do.
13.) Can you think of a way that her illness has had a positive influence on certain parts of your relationship or lifestyle?
* Ken: We take very little for granted anymore.
* Tim: I don't take things for granted. I realized that I wasn't doing a lot of the little things that make a relationship work., such as listening and just being there to hold and nurture. I have more conversations with our children and take the time to listen to their thoughts.
* Bud: It has taught us to rely on each other and on God.
* Robert: Oh yes! Our faith is stronger. Each day is a gift. Little things mean much more.
* Rex: Focus is the single greatest benefit we are receiving through the challenge of chronic illness. Most people will struggle with a lack of focus all their lives because they think they have the time and energy to do almost everything, not just what is important. Our/her limited reserves have afforded us some valuable choices as to what we will give ourselves.
* David: It has helped me become less self-centered.
* Joel: I appreciate things she does for me/us even more, knowing that it's harder for her than for a healthy person. Her condition keeps us dependent on God and our faith in Him. Things we consider top priorities. Her illness has opened a door for her career, and the personal satisfaction of working towards a goal and accomplishment has enriched both of us.
14.) If you have a faith, explain how it makes a difference in coping with the difficulties of a family member having an illness.
* Joel: The Bible assures us that God has our best interests in mind as his goal. We cling to Him in faith of that belief and pray for whatever healing or relief He would will to give.
* Ken: God is my refuge when it seems too much to bear. He is my source of patience when I can't muster anymore on my own.
* Tim: I have never been very religious in the past, but I do take every opportunity to say as many prayers during the day for my wife, children and myself.
* Bud: I do not believe it would be possible for me to cope without faith in God and his goodness. I know that as good as life is on earth we have a better promise of a life with God and His family.
* Robert: Faith gives you the hope that each day will be a little better.
* Rex: Our faith helps us keep perspective on what we consider temporal, namely, life as we experience it in this earthly shell. We see this life as terminal, so we don't place our hopes in things that may keep these bodies going a few more miles. We keep our hope in God, the Creator and Sustainer of this life, and in what we believe He says about the unseen, eternal things to come.
* David: Jesus is not in heaven whining about how his bride does not meet his needs. He loves without whining and without regards to the health of his bride. If I am to "love my wife as Christ loved the Church" then I must not whine about my wife--in her illness--not meeting my needs. That is not Christian manhood. The struggles of marriage help me through grace to grow in His image. That is why a marriage with a sick wife can be a blessing. God can use my trials to remold me, so that I become less self indulgent and someday I might truthfully say, through the grace of God, that it is "no longer I who live, but Christ who lives in me."
15.) If you were to counsel a man whose wife had just been diagnosed with a chronic illness, what would you tell him?
* Ken: Don't let your wife feel sorry for herself. Let her know how valued she is for who she is, not for what she can do and not do. Discover an appropriate mechanism for venting your frustration and be patient with her even when you don't understand what is wrong.
* Tim: Take the time to listen. Tell her how much she means to you, and that you will be there to support her. Remember the "in sickness and in health" promise. She would stick by you if you were the one with an agonizing illness.
* Bud: I would advise him to maintain the relationship on strengths such as what it teaches you about yourself and others. It is easy if you love the person that is ill. You can always see love demonstrated in a variety of ways.
* Robert: I would tell him that none of us have any guarantees about anything. But if you have faith in God, He will help you. Also, pick up any and all information regarding the illness. Really educate yourself. Having a better understanding of the illness is so important.
* Rex: Find support immediately. Not all support groups per se can accomplish what you want. You must have a place to vent outside of your relationship with your wife. I found mine primarily in a weekly group with two other men, who were healthy enough to help bear the grief I carried for several months. They played a major role of encouragement for me and my wife.
* Joel: Understand that he can't "fix it." I would explain that there is a grieving process because there is a "loss." I would suggest counseling if things are getting too difficult. Pray and get into a good, supportive church. Explore resources on the net and otherwise. Get his wife a subscription of ...And He Will Give You Rest. Encourage his wife to do personal research about her illness and to try to meet others in the same situation. Don't settle when it comes to doctors-be tenacious and find the best, a doctor who will listen, even if it requires going to several to find the right one.