When Mary Ann was diagnosed with Parkinson’s twenty-two years ago, our Daughter Lisa was a Senior in high school and our Son Micah was in the Eighth Grade.  They were, of course, both living at home.  I had gone ahead to a new job in Oklahoma City, many hours away.  The family joined me there at the end of the school year.

Since the kids were at home, they knew pretty much from the beginning the name of the Disease with which their Mom had been diagnosed.  For those who are diagnosed after the children are out of the house and living elsewhere, the question is, when should they be told.

I am convinced that more information is better than less information.  Hiding the truth is unsettling to the children and unfair to them.  They are a part of the family.  They need to hear from Mom or Dad, whomever has the disease, what it is and what it means.  Adult children, even young adult children could easily feel betrayed if they found out from someone else through a slip of the tongue what they should have heard from their parents.

Mary Ann chose not to tell family and friends for the first five years after diagnosis.  She did not want to be treated differently on account of the Parkinson’s.  I would have preferred telling family and friends much sooner, but it was her call.  She had the right to decide who should know what about her diagnosis, and when they should know it.

My bias is toward laying out the basic information so that there is no guessing or wondering.  The disease seems to have more power when it is secret than it does when it is out in the open.  For people who care about you to move through the process of coming to accept it, they need to know about it.

When finally the news was out, we could begin to deal openly with the various challenges that came with it.   People were anxious to help to whatever degree they could. The Parkinson’s just became a part of the landscape of our lives.

Caregivers and spouses need to decide as each new dip in the roller coaster comes, how much to tell whom and when to tell them.  I have heard many say, “I didn’t want to worry the kids, so I didn’t tell them what was going on.”  The result of that approach is to increase the concern of the kids since they can’t count on hearing the truth about what is going on.  They wonder what they are not being told.  They worry about how things are really going.

It is not, of course, as easy as deciding to tell them everything all the time.  Since adult children have full lives with worries of their own, they can be overloaded with too much information, drawing them into every bump in the road in their parents’ struggle.

I guess the goal is to find the Golden Mean, the balance that allows them to be confident that they will hear when there is a significant change, but not be drawn into the day to day ups and downs.

The same is so with friends and family.  They are interested in how things are going, but they do not need to be invited to join you on your roller coaster ride.  They have one of their own.

One mistake I have made in the past as I have communicated changes in our situation, is to share a noticeable dip in the roller coaster we are on, but neglect to give a quick follow-up when things are going better.  Especially those with whom we share only occasionally and then only when there is a dramatic change can be left thinking we are at a low point in our struggle when in fact we have come out of it to a much better place.

Gratefully, at least for computer users, there are free websites that can be used to post updates.  That way people who are interested in finding out what is going on can check the site to see how things are going.  Those sites can be used to make sure that people have accurate information on your situation, rather than resorting to the “I heard that…” word of mouth that may confuse the facts.  A couple of sites that come to mind are http://www.caringbridge.org and http://www.carepages.com.

As for the kids, they need to be confident that they will hear about any major changes without being drawn into the day to day ups and downs.  That provides them with a sense of security that allows them to concentrate on their own lives.  We raised them to go out on their own and make lives for themselves.

Friends and family will vary in how much they want to know, but they cannot be a support when troubled times come if they don’t know about the trouble.  Let them know when the troubled times have relented so that they can celebrate with you.

The people in your life care how things are going.  They want to know, just remember that they have lives of their own.

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