Raising a teenager is a challenging and bewildering job under the best of circumstances. The task becomes even more complex when one of the parents is also struggling to make sense of Parkinson’s disease. The key to managing life as a parent with Parkinson’s is learning to recognize your teenager’s developmental needs then putting strategies in place for meeting them.
Originally developed as a model of preparation for death, Dr. Edith Kübler-Ross’ five stages of grieving-denial, anger, bargaining, depression, and acceptance- are often applied to life-changing events. Receiving a diagnosis of Parkinson’s disease certainly qualifies as life changing and Kübler-Ross’ model is helpful for guiding an individual in a quest to come to terms with the diagnosis.
It is almost standard practice to approach the model as a step-by-step sojourn, beginning with denial (“It can’t be PD. The diagnosis must be wrong”) and ending with acceptance. However, this practice presumes that the stages are sequential and unidirectional. They are neither. One does not simply progress through the stages one after another, completing one then graduating to the next. In fact, it is quite common for an individual’s journey through the stages to be marked by advance, retreat and even leaps over a given step altogether. Some people get the sequence scrambled, some get stuck in a given stage, and some people find the whole Kübler-Ross model doesn’t even apply to them.
My last blog discussed the difficulty in making a transition back to the family home because of Parkinson’s Disease. In that entry, I discussed the relationship challenges such a transition entails. In this entry, I want to discuss the loss of independence.
In some ways our Western ideas about independence are a part of a devastating paradigm that produces unnecessary guilt when we must live with family. We equate a return to the bosom of our family as failure. We are relinquishing control of our lives.
People with young Parkinson’s often lead double lives. They walk uncomfortably between two worlds - the one that knows they have PD and the one that doesn’t. The decision to reveal your disease to anyone is very personal and far too complex to reduce to a few simple guidelines. The risks and benefits are unique to both situation and person. There are, however, some things to keep in mind as you choose to discuss your PD.
You are really interested in someone. You have had a couple of dates with this person, and you know that you would like this relationship not only to continue but to grow. In a recent last blog entry (1/16/12), I cautioned about putting too much meaning into early dates. But there can come a time when it is no longer just a date.
Your Parkinson’s disease has you back under your parent’s roof.
You had no other option but that doesn’t mean you aren’t second-guessing your decision. It feels like you are a child again. Years of independence feel as though they have simply melted away. There is probably no aspect of PD more difficult than having to return “home” after spending many years away. However, this is not a moment of personal failure but one of necessity. Making it work may be challenging, but it can be done.
The greatest obstacle to successful transition back under your parents’ roof will be the natural tendency to fall into old behavior patterns. This applies to both you and your parents. After all, your interactions emerged and began to evolve the moment you drew your first breath. There is no one with whom you share a longer history or with whom you have the most deeply established relationship roles. Roles tend to define interactions and can be very resistant to modification even when circumstances change.
I have been asked by several readers to discuss the topic of dating and Parkinson’s disease. I think it is helpful to start by thinking back to when we all first began dating.
Most of us remember well the awkwardness and insecurity the dating process produced during our early adolescence. From the multiple doubts about the possibility the person will say no to the worries that there will be nothing to talk about, dating was an anxiety-provoking experience for many young men and women. It strikes me that Parkinson’s brings back many of those fears we all shared.
Many individuals who acquire PD early in life are single. They may have been enjoying exciting careers, experimenting with life, looking for the perfect relationship or emerging from the least perfect relationship imaginable. The sudden emergence of PD can make being alone particularly frightening. All of us manage stress better when we are supported by a loving partner. The need to find that support can be a powerful drive, one that can cause a person to lose sight of why we date.
If you haven’t, then I would recommend you stop while you are ahead. Nothing breeds guilt, unhappiness and self-directed anger so much as a broken New Year’s resolution.
It is human nature to try to turn moments like a fresh year into an opportunity to improve our lives. When such moments occur during a time other than January 1, we more typically call them goals or aspirations. I don’t think it is necessary to change this perfectly good terminology into the looming and somewhat legalistic sounding New Year’s resolution (as in “Be It RESOLVED…).
Ah, the Holidays!
A time for families and friends to come together in the spirit of the season. A time to relive old memories and build new ones. A time of warmth and joy. A time for grand feasts and what were once called “Kodak moments.” A time to tap into personal and longstanding cultural traditions for Christmas, Hanukkah, Kwanzaa. Remarkable, magic times! Solemn, momentous times.
And for young men and women with PD, a time of stress.
November is National Caregiver’s Month according to the National Family Caregiver’s Association. These individuals certainly deserve our attention and accolades. It is noteworthy, however, that the term “caregiver” often rankles individuals with young-onset PD. I don’t think this should be surprising.
Those who know me or have followed my blogs are aware that I do not like the term “caregiver,” particularly as applied to a spouse or partner who is simply following through on a relationship vow made when both were healthy. For them, “sickness and health” was a meaningful obligation. These are men and women of character who stand by their partner through the best of times and the worst of times. They do it without getting paid, often incurring a significant economic hardship due to a decreased presence in the workforce.