1.) Men Speak Out: husbands share about being a caregiver....EASIER TO READ!!

From: Helen Dynda (olddad66@runestone.net)
Fri May 11 01:57:38 2001


||| Men Speak Out ( husbands share about being a caregiver
http://www.restministries.org/art-menshare.htm

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.

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1.) Men's Bios:

* 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.

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2.) 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.

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3.) 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.

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4.) 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.

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5.) 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.

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6.) 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.

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7.) 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.

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