Polio Place

From the series, Polio Survivors Ask, by Nancy Baldwin Carter, B.A, M.Ed.Psych, from Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.

Q: As I get older and accumulate more secondary conditions, it is more difficult for me to get around. Do you have any suggestions as to how to communicate my knowledge about my post-polio health to my grown children when they really don’t want to “hear it”?

A: There may be more than one hurdle lurking in this question.

We should start with US. Some of us talked with our children about our post-polio experiences from the get-go. Others played the role of the brave soldier, quietly marching on in the face of adversity, full of pluck and certain sacrifice—and never revealing the polio reality to anyone. Which has been the approach to our disability?

Some of us have spent years nurturing a fantasy of our capabilities, always telling ourselves, “No problem. I can handle it myself.” And suddenly now, just thinking of making the effort fills us with dread, exhausts us beyond measure. Have we reached the point when we can say, “Sorry, gang, I simply cannot do this anymore?

We may have a new truth to tell ourselves about our physical status, now that polio and aging have come crashing into each other.

How can we approach the subject with our children who have a hard time considering they have a parent with increasing health issues? Think about venturing into these areas:

• ATTITUDE. Can we be straight-forward, truthful, accepting our role in this scenario—and not play the shame game if others don’t react the way we think they should? Can we empathize with our children’s feelings enough to put them at ease as we spell out what we want to say? 
   
•  EXPECTATIONS. Do we realize we can’t realistically dictate our children’s sensibilities any more than they can ours? Aren’t our expectations of ourselves the only ones we can truly control?
   
• SUBSTANCE. A few essential items about our conditions are enough at first. We needn’t inundate others with “homework.” If our children don’t seem to want more, we should thank them and move on. Truth is, while many of us may have children who can handle such details, others may not. This is a bonus—the prize in the Cracker Jack box—not a necessity.

It is important to have someone “in the know,” however. Here are some things we can do:

• Find a relative or friend who agrees to serve as Durable Power of Attorney for Health Care. This person can legally speak for us if we should become incapable of speaking for ourselves (doctors determine that patients are incapable, not relatives or others) when serious health care decisions are needed. Discussing specifics extensively will give us a better chance of having our wishes carried out. 
   
• Make a Living Will, which allows us to tell doctors and others, in writing, what we want done regarding certain life-or-death situations. Give copies to our doctors, hospitals, family members, and friends--and hope someone insists this be followed.
   
• Show our doctors reliable articles and participate in our own health care decisions. Ventilator users will be particularly interested in PHI’s new doctor/patient worksheets “Take Charge, Not Chances.”
   
• Choose a buddy, maybe someone in the polio support group, with whom we feel free to talk, shed a tear, have a laugh about our current polio selves. We can do the same for them. Stuffing is not a good idea.
   

Mainly, our health care is up to us. Getting our children involved may be helpful, but it isn’t a requirement. They observe the struggle and they love us in a very special way. Sometimes that has to be enough.

Source: Post-Polio Health International (www.post-polio.org)