Chapter 8: You're Not Alone: Psychological Issues

Chronic Illness and the Burden of Responsibility
Question: 

 

By giving all of the responsibility to our children to manage their disease (or theoretically doing so) do we set them up for feelings of failure (or place an unfair emotional burden on them) when their disease progresses despite proper care?     - Paula   

 

Dr. Cline's Answer:

 

Short answers: No - if the issue is handled correctly. Yes - if the issue is handled incorrectly.

 

Explanation of the short answers:

 

Proper goal setting with your child is essential. If parents express their children’s self-care goal as “keeping yourself healthy” or “making sure you don’t become ill or have a regression,” they set their children up for failure when dealing with many diseases that often run a progressively more threatening course.

 

Then, as the questioner notes, if the illness progresses, the children may feel like a failure when they have been taking good care of their medical problem. Even if the parents have been taking the primary responsibility for care, the situation can still work out poorly. The children may feel guilty about disappointing their parent, blame the parent or they may hide their symptoms. Either way it’s a lose-lose situation.

 

This can likely be avoided if the self-care goal is expressed along the lines of: “Roy, when you take good care of yourself, you are giving yourself the very best chance of living a longer and healthier life. You must feel really proud of the way you handle your situation when you …..”

 

So, with some chronically worsening illnesses, the goal is not to “always remain healthy” but to “take good care of yourself to remain as healthy as possible.”  The parents show encouragement about the behavior and the actions their children take rather than focusing exclusively on how medically well the children are doing. (Proper use of encouragement is a very important subject explored on pages 88-94 of the book Parenting Children with Health Issues.)

 

Some medical conditions, like cystic fibrosis, may progress. This is always disappointing and frustrating. And at that point, wise parents put their arms around their dear children and say something along the lines of, “Gosh, honey, this is disappointing, but think of how much sooner this might have happened (or worse it might have become) if you had not been taking such good care of yourself.”

 

Lisa’s Thoughts:

 

Our son, Jacob, is very responsible and can be a bit of a perfectionist at times. I had that very same question when we wrote the book so we discussed this on page 200 under: “Chronic Illness and the Burden of Responsibility.”

 

The approach Foster described above has really helped us walk that fine line between Jacob feeling overly responsible for natural “downturns” (which can be common with CF) and feeling like “Why bother doing treatments every day since I’ll get sick anyways?”

 

I’ve also noticed that, during occasional resistance to treatments, I might (unthinkingly) say something to the kids like, “If you don’t do your breathing treatments, you’ll get sick.” It comes from the “parental lecture lobe” of our brains and is similar to the “If you don’t wear your coat, you’ll get sick” lecture that comes squirting out of our mouths so naturally. This can also cause our kids to feel like it’s their fault when they get sick. A better approach would be to use choices and/or enforceable statements to handle power struggles and resistance rather than lecturing or threatening.

Posted 2/19/07  See Disclaimer at the bottom of this page


Over-protection and the Spiral of Hostile Dependency


Question:

 

When caught in the cycle of hostile dependency, where does one start in breaking the cycle?  - Dottie 

 

Dr. Cline's Answer:

 

Hostile-dependency is a major issue when dealing with a child's medical issues who tend to get spoiled because of the many problems they face. Hostile-dependent children are entitled and demanding.  There is a metaphor: "That child bites the hand that feeds him." They may also be referred to as “spoiled rotten.” Such children put parents (and others) in the position of feeling obligated to do things for them that might be freely offered to respectful children.

 

This unfortunate cycle starts with parents not setting their own self-care boundaries. See the cycle illustrated on page 205 in the book Parenting Children with Health Issues (also shown in the Powerpoint Presentation on this website).

 

Step 1: Pick a behavior that you would like to change. It doesn’t have to be the “worst” problem, but simply a chronic problem that you know will come up. The mind set, as Jim Fay says, is “Decide to experiment with _____.”

 

Step 2: Make an observation: “It makes me feel sad for you when I see you (hear you) ______.

 

Step 3: Calmly, showing as little frustration as possible, let the child know that his or her behavior drains your energy. Make no other comment at this time.  “It drains my energy when you ______.”

 

Step 4: Wait with patience and anticipation (but try not to show glee) for a point within the next few days or so when your child will want something that would take energy to provide and is medically safe to withhold. This could be either an action (cooking a big dinner, taking the child some place he or she wants to go) or a material offering (something that you would usually pay for or provide).

 

Step 5: With sorrow for the child, say something along the lines of: “Honey, I have some sad news for you. Ordinarily I would (do or provide ______) but that would take energy. Remember a couple of days ago when you drained my energy by _______?  I understand that you could be unhappy that I am not going to ______, but the good news is that now the energy has been equalized and you don’t have to feel guilty about draining it the other day.”

 

Saying “unhappy” at this point is probably an understatement because entitled children pitch memorable fits and historically remarkable tantrums when they don’t get their way.  The secret to success is to remain empathetic, calm, (not reassuring, pleading or showing frustration) and stick to your guns. Unwise parents get noisier, show frustration, and finally become angry.

 

There are examples of using the Energy Drain Technique for medical issues on page 62 in Parenting Children with Health Issues and in other Love and Logic publications for general parenting issues.

 

Lisa’s Thoughts:

 

Our two children aren’t hostile-dependent but, occasionally, they can have a demanding attitude when they want something. It sounds like, “I want _____!” We certainly don't want to reward such a demanding attitude or we'll see alot more of it! Our immediate response is to use an enforceable statement such as, “Sweetheart, I am happy to do (or buy) _____ for you when you ask nicely.”

 

Of course they immediately say (ever so sweetly), “May I please have ___?” to which we calmly reply, “Nice try. Next time, ask just like that- the first time.” They generally respond with something like, “Aww, man!” and that’s the end of it.

 

There are plenty of times when we say, “No” even when they do ask nicely (the first time) because we don’t have the extra money, etc. and they accept it just fine.  But, it took a bit of training in the early years to help them learn that having a “fit” doesn’t pay when a parent says “no.” So, parents of young children who might be reading this: be sure to set good self-care boundaries early on. Manners matter. Don't reward demands. And, let your “no” mean “no.” 

 

Posted 2/19/07  See Disclaimer at the bottom of this page

 

 


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