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Cancer treatment places enormous pressure on a marriage. Couples may be separated for long periods of time, emotions are high, and coping styles and skills differ. Initially, family life may be shattered. Couples must simply survive the first few overwhelming weeks, then work together to rearrange the pieces in a new pattern.

Here are parents' suggestions and stories about how they managed:

• Share medical decisions.

My husband and I shared decision-making by keeping a joint medical journal. The days that my husband stayed at the hospital, he would write down all medicines given, side effects, fever, vital signs, food consumed, sleep patterns, and any questions that needed to be asked at the next rounds. This way, I knew exactly what had been happening. Decisions were made as we traded shifts at our son's bedside.

I made most of the medical decisions. My husband did not know what a protocol was, nor did he ever learn the names of the medicines. He came with me to medical conferences, however, and his presence gave me strength.

Curt and I discuss every detail of the medical issues. It is so helpful to hash things over together to get a clearer idea of what our main concerns are.

Take turns staying in the hospital with the ill child.

We took turns going in with our son for painful procedures. The doctors loved to see my husband come in because he's a friendly, easygoing person who never asked them any medical questions. We shared hospital duty, also. I would be there during any crisis because I was the person better able to be a strong advocate, but he went when our son was feeling better and needed entertaining company. It worked out well.

My husband fell apart emotionally when our daughter was diagnosed, and he never really recovered. He stayed with her once in the hospital and cried almost the whole time. She never wanted him there again, so I did all of the hospital duty.

Whenever Brent was in the hospital, we both wanted to be there. We were able to be there most of the time because our children have a wonderful aunt and uncle who stayed with them when needed. During Brent's second extended stay in the hospital, we both let go a little, and we each took turns sleeping at the Ronald McDonald House. That way we each got a decent night's sleep (or some sleep) every other night.

My wife took care of most of the medical information gathering because she had a scientific background. But my work schedule was more flexible, so I took my son for almost all of his treatments and hospitalizations. I cherish my memories of those long hours in the car and waiting room, because we were always so very close.

Share responsibility for home care.

My husband worked long hours, and therefore I had to do almost all of the home care. It was very hard on me, especially in the beginning when my daughter was so ill and needed so many medications. I felt like I was doing all the horrible things to her; I wish that he could have done some of it.

We had a traditional relationship in which I took care of the kids and he worked. I didn't expect him to cook or clean when I was staying at the hospital—it was all he could do to ferry our daughter to her various activities and go to work.

We both worked full time, so we staggered our shifts. He worked 7 to 3 during the day: I worked 3 to 11 at night. He did every single dressing change for the Hickman catheter—584 changes, we counted them up. Wherever I left off during the day, he took over He was great, and it really worked out well for us. We shared it all.

My husband really didn't help at all. I couldn't even go out because he wouldn't give the pills. He kept saying that he was afraid that he would make a mistake.

• Accept differences in coping styles.

We both coped differently, but we learned to work around it. I didn't want to deal with "what if" questions, but he was a pessimist and constantly asked the fellow questions about things that might happen. I felt that it was a waste of energy to worry about things that might never happen. I didn't want to hear it and felt that it just added to my burden. It was all I could do to survive every day. We worked it out by going to conferences together, but I would ask my questions and then leave. He stayed behind to ask all of his questions.

My husband didn't have the desire to read as much as I did. However, whenever I read something that I felt he should read, he always took the time to do so and then we discussed it.

• Seek counseling.

I went for counseling because I couldn't sleep. At night, I got stuck thinking the same things over and over and worrying. I ended up spending two years on antidepressants, which I think really saved my life. They helped me sleep and kept me on an even keel. I'm off them now, my son is off treatment, and everything is looking up.

My husband and I went to counseling to try to work out a way to split up the child rearing and household duties because I was overwhelmed and resenting it. I guess it helped a little bit, but the best thing that came out of it was that I kept seeing the counselor by myself. My son wanted to go to the "feelings doctor," too. I received a lot of very helpful, practical advice on the many behavior problems my son developed. And my son had an objective, safe person to talk things over with.

Most marriages survive, but some don't. It is usually marriages with serious preexisting problems that are further strained by cancer treatment.

My husband had a lot of problems that really brought my daughter and me down. The cancer really opened my eyes to what was important in life. We stayed together through treatment, but we divorced after the bone marrow transplant. I just realized that life is too short to spend it in a bad relationship.

My husband went to work rather than go with us to Children's when our son was diagnosed. It went downhill from there. He started using drugs and mistreating us, so we divorced.

Blended families

Many children diagnosed with leukemia live in blended families. Parents may be separated or divorced, remarried, or living as single parents. There may be foster parents, biological parents, stepparents, or legal guardians. Communication between involved adults may be open and amiable or stressed and uncooperative. It is best for the child when all parents involved put their differences aside and work together to provide an environment focused on curing the ill child. Counseling helps, too.

I have a blended family (although my husband and I have been married for 20 years now) and have two teenagers in the house. My recommendation is counseling. Both of my teenagers and I see a therapist individually. My husband and I also had to go to marriage counseling at various times during our marriage. Serious illness will put a strain on any marriage. If you have issues before cancer strikes, they will become exacerbated. We have good insurance and it pays for most of our sessions. I paid about 20 percent out of pocket. It is so worth it. Raising a family is hard work. Add cancer on top of it and, quite frankly, it can become overwhelming. Family counseling helps each member of the family have an outlet to express their concerns and worries.

If the child with cancer has two homes due to a blended family, it often helps to have a journal that goes with the child to each set of parents. It keeps everyone involved up-to-date. It can contain medications given, dose changes, doctor appointments, blood test results, and current symptoms.

Unfortunately, the diagnosis of cancer in a child can make strained family relations even worse. It is important that all parents with a legal right to information about all aspects of the illness receive that information and be able to participate in the decision-making process. In some situations a social worker, nurse practitioner, primary physician, or psychologist will work with all parties to set up family meetings (together as a group or separately, depending on family dynamics) with healthcare providers to make this possible.

Telling your friends about cancer is difficult, but it's not as hard as keeping it a secret would be. Fighting this cancer has been a family effort and frequently an effort involving our larger circle of friends. The more people we've been able to call on for support, the better We've had to keep in mind that we've had an opportunity to adjust. But, the news is brand new to our friends, and it can be a shock. People often don't know what to do or say when they've been told that someone they care about has cancer

After we've given them some time, and when they ask what they can do, we tell them something constructive: mow the lawn, take back the recyclables, go to the store, bring over a pizza on Friday night, whatever would help.

Before my son was diagnosed, I had no idea what this experience was like, and I try to remember that my friends don't really know either, unless I tell them. They can't know the sleepless nights, the anxiety over tests, the fear when your child says he doesn't feel well, or the numbing fear that we might lose our precious child. Some of us have found great support and others none. I hope your family and friends come to your side.

I want to say that I hope that cancer does not become your life. For us, it used to be an "elephant in the living room," and now it's maybe a "zebra in the kitchen." There are times when it demands everything you can give, no doubt, but there will be moments when there is time for the rest of your life.

CHAPTER 6

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