Recently, I asked a group of Parkinson’s Partners what they would most like their loved one to know. The results were fascinating and I will be discussing them over several blogs.

The first group observation is particularly telling about how communication within a PD relationship can be blocked by guilt:

“I don’t want to appear mean when I know you are sick but there are things I have to point out. You have changed and we can’t ignore that.”

Many partners are hesitant to appear critical of a person with PD. After all, no one asks for the diagnosis and life is already unfair enough for a person who has PD, isn’t it?

But things have changed and continue to change over time. Many couples cope with neurological change by entering into a tacit agreement not to discuss the disease- or the future. For the partner, the assumption is that no communication is better than any communication that might cause the person with PD to feel guilty about the effect the disease is having on the partner. Effectively, we have a case in which the partner’s feels guilt about the possibility of causing the person with PD to feel guilt.

This communication pattern often produces paralysis.

For the Partner, paralysis can lead to frustration and even anger that becomes increasingly difficult to deny. Ultimately, these feelings can be extremely hard to hide from the person with PD. They emerge as depression, anxiety, irritability, even burn-out. The guilt that strives to avoid producing guilt ultimately makes the guilt even worse.

Failure to discuss Parkinson’s and the future openly ultimately causes a Partner to feel like a caretaker and the person with Parkinson’s to feel like a burden. Silence produces a magnifying feedback loop that makes the disease all the harder for everyone to bear.

It appears the support group in its collective wisdom was actually saying “We have changed and we can’t ignore that.”

Paul Short, Ph.D.

This entry was posted on Tuesday, May 19th, 2009 at 6:58 pm and is filed under Parkinson's Partners Blog. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.