||| Men Speak Out ( husbands share about being a caregiver
Our spouse is the person who stands beside us. Whether he shows his love by holding our hand or scrubbing the shower stall, his unconditional love and support is something we try not to take for granted. The support groups that we are able to take advantage of do not recognize him. Just as we need to know that we are not alone in our pain, he needs to know he is not alone in his concerns, frustrations and fears.
Ken, 38, is a pastor in San Diego, CA. He's been married for 18 years, and his wife was diagnosed with fibromyalgia 16 years after their marriage. He has two children, ages 13 & 10.
Tim 41, is a retail store manager and lives in Torrance, CA. He has been married for 13½ years, and his wife was diagnosed with interstitial cystitus 6 months ago. They have two children, ages 11 & 6.
Bud, 66, is retired, formerly president of a subsidiary of SBC Corp. He and his wife of 46 years live in Weatherford, TX. His wife has been diagnosed with various illnesses, including, but not limited to: chronic renal failure (requiring removal of one kidney), anti-phospholipid anti-body syndrome, lupus, rheumatoid arthritis and fibromyalgia. They have three adult childre.
Robert, 46, works for a roofing/flooring company in Eugene, OR. He has been married for 23 years. His wife was diagnosed with multiple sclerosis after 6 years of marriage. They have two children, ages 19 and 16.
Rex, 46, is a church worship director/consultant in San Diego, CA. He has been married for 22 years and his wife was diagnosed with MS 19 years after they were married, although she had been tested 10 years prior without a conclusive diagnosis. At that time they chose not to have more children over their concern for the potential impact of the illness. They have one son, age 17.
David, 42, works for an aerospace company in a city in southern California. He has been married for 16 years, and his wife has yet to receive a diagnosis, although she has experienced a variety of symptoms for over 10 years. They have a blended family of two children and a dependent niece, ages, 21, 17 and 13.
Joel, 32, is a multi-media artist/musician for Sony PlayStation in San Diego, CA. He has been married two years, and his wife was diagnosed with rheumatoid arthritis six years ago, while they were dating.
How has your wife's illness affected the personal relationship you share?
Ken: I get frustrated when she is angry with me, only to eventually find out that she is in pain and that is why she is unable to be happy. Her illness has tested our patience with one another on more than one occasion.
Tim: My wife and I are now separated. I feel that this has played an integral part in our breakup.
Bud: I do not look upon it as having any adverse affect. We play the cards we are dealt. Betty has many strengths that we can build upon. She is a loving person and a good role model for our children and others. She has a strong faith in God and is an excellent teacher of God's word. It would be easy to wonder what our lives would be like if she had not been besieged with illness, but there would probably have been others things to worry about. We consider ourselves blessed beyond measure in our relationship with each other and with God.
Robert: We share a wonderful closeness and a passion for the other's well being. I believe her MS has only reaffirmed how much I care about her.
Rex: It has forced the issue of emotional health to the forefront. My wife's diagnosis and increased sense of dependence helped me to identify my own lack of wholeness, highlighting the need for change in me. I began to see my personal well being as crucial to our relationship.
David: We rarely sleep together because she tosses and turns with cramps in her sleep. Sexual relations are rare and of short duration due to the pain. We rarely attend social events because of her pain.
Joel: It has not affected our personal relationship to a great extent, from my perspective. She has not allowed her illness to negatively affect our relationship. I actually feel "buffered" from the worst of it.
How has it affected your communication with her?
Ken: In her desire to not come across as a constant complainer, she does not effectively communicate her discomfort to me, which only further serves to cause a breakdown in our communication.
Tim: In the beginning I didn't take her seriously. Then I realized how severe it was, but the damage was done; we went downhill from there.
Bud: I've learned when to give her private space and encouragement I know that a snappy answer or a complaint is most often a reaction to pain or depression.
Rex: I believe I've become a better listener, able to resist the temptation of "fixing" her dilemma, which is most often a need to express herself and really be heard.
David: I have been frustrated with her refusal to go to the doctor. She has been irritated with my nagging her to seek medical treatment that she did not feel would be of any benefit. Our communication has improved during the last couple of months as I have been seeing a psychologist. This counseling has enabled me to better communicate how my wife's illness frustrates me and affects my addiction problem. My counseling has been a definite help to our communication.
Joel: I feel hesitant to complain if I have aches and pains, seeing them as minor in contrast to her pain and limitations. It's easy to feel "guilty" about complaining, however, she has a caring enough attitude that it is not a problem.
How has her illness impacted your family?
Ken: Her illness has caused her to not always have that bright, bubbly personality that we took for granted. She is less patient with all of us and so we find ourselves working around her at times
Tim: Our children don't understand why Mom is so short-tempered and why she seems to be in bed so much. They would like more time with her, but I have them with me; more often to give her some rest.
Bud: Most impact has been positive in that it taught our children compassion and equipped them for handling situations in their own lives that were not as expected. It required us to develop skills such as cooking and house cleaning so that the family routines were not as impacted during periods of illness.
Rex: Her illness has compounded the issues we have as parents of a teenager. Each of us has lost things to the disease. Some of these losses are obvious; some are more subtle. They may be identified and addressed if we find the energy and grace to dialogue with mutual understanding in mind.
David: My wife is a homemaker. Her illness has affected her ability to do homemaking tasks. It also makes her unable to attend family social events or our son's little league or school basketball games.
Joel: There are things that she needs help with; doors sometimes, tight jars, etc. The limitations do not affect a noticeable burden on me.
What coping skills has your family used to adapt to your wife's changing condition and role as a wife and mother?
Ken: Sometimes we work around her and other times we will try to accommodate her, but often with the wrong motives of just trying to appease her so that she'll be happy.
Tim: We both take extra time to listen to our children's questions and we are being more patient. Also I spend more quality time with them. Hugs go far when life is uncertain.
Bud: The children and I learned how to fulfill traditional Mom responsibilities. She learned to do accounting and other traditional Dad responsibilities.
Robert: We help each other more with household chores.
Rex: Knowing that her physical reserves are limited and may affect other reserves (e.g., mental, emotional, relational), we try to make room for short respites, such as a simple meal out or a drive to the ocean. In caring for each other this way, we find it much easier to cope.
David: Our thirteen-year-old son and seventeen-year-old niece are self sufficient about cooking for themselves and ironing their own clothes. Our niece takes responsibility for cleaning the bathrooms and dishes when my wife is ill. Our son is willing to help around the house. I do the shopping, laundry, and other household chores when my wife is sick.
Joel: If I'm not sure whether she wants help with something or not, I ask first.
What are your greatest concerns regarding your family's futures, in regard to our wife's condition?
Ken: First, that she will continue to deteriorate and be unable to enjoy doing active things with the family. Secondly, that her pain will further decrease her patience and eventually drive a wedge between her and the rest of the family.
Tim: My greatest concern is that we never find a cure or adequate relief for my wife. I don't want our children to grow up and miss out on the fun they once had with their loving mom.
Bud: I have no real concerns except for when she hurts or cannot do the things that she would like to do. We have been blessed with our children and our life together.
Rex: While we still wrestle with changing roles and ways of relating in our work together, we also feel the uncertainty of future losses from her illness. This creates anxiety over decisions regarding jobs and living situations that will support our limitations.
David:My greatest concern is her pain. I feel helpless to do anything. I am concerned that her pain and medical problem will become more severe.
Joel: Her ability to care for children regarding physical demands.
Who or what has been your greatest sense of support during the difficult times?
Ken: I first go to the Lord and seek His counsel and direction. Secondly, what she has learned through counseling courses, books and other resources have created opportunities for us to discuss her illness and learn together.
Tim: I have gone on-line to read all I can and to participate in on-line discussions. Others with IC have been a great source of comfort. Hearing from them has helped me to get a better understanding of what my wife goes through each and every day. They have been very attentive to my concerns.
Bud: Our faith in God, knowing that He is in control and that we will have a home in heaven. I can do all things through Christ who strengthens me.
Robert: The knowledge of knowing what we could do in equipping ourselves, medically speaking. Knowing our options for treatment.
Rex: Our friendship and values have sustained us through the hard times. We have always enjoyed being together because we have so many common goals and like to be part of each other's fulfillment of these goals.
David: God has been my greatest support.
Joel: Faith in God is first and foremost, especially her faith. Because of that, she herself has provided a sense of support by her faith. Also, both of our parents and their prayers.
In what ways do you affirm your wife's value and worth when she is feeling less than her potential?
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.
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.
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.
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.
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.
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.
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."
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.