Are you by nature a planner or a procrastinator? As a clinical social worker in a PD Center of Excellence I work with people with Parkinson’s (PWP) and their care partners at critical crossroads of decision making, it is challenging to balance planning ahead versus staying focused in the present. My social work training and decades of experience help me appreciate that how and when we take action in the PD arena, is similar to how we behave in other arenas.  So, back to the opening question: do you tend to be a planner or a procrastinator?  Are you unsure which category you fall into?  Perhaps that’s because we don’t fall neatly into these discrete categories.  However, we do have styles and patterns for how we make decisions.  Consider these different strategies in planning a dinner party. 

The planner, weeks before the party, consults many cookbooks and online recipes and may try the recipe out ahead of time.  Planners will try to set the table a day before and does food preparation as far ahead as possible.  When guests arrive music is playing and appetizers are plated. 

The procrastinator decides to see what looks good at the market and will base the menu on that, shops for what is fresh and enjoys the excitement of trying something new. If there is last minute preparation, guests may be asked to put on an apron and help out! 

One approach isn’t better than another. The planner may feel more pressure to have all aspects of the dinner well-orchestrated.  The procrastinator may be more adventurous and is known by friends and family for spontaneity.

A great deal of humor is used regarding these two groups of individuals.  Some relevant quotes for planners: “A goal without a plan is just a wish” and “By failing to prepare, you are preparing to fail”.   And for the procrastinators there is humor.  For those who tend to delay there are these adages: “Tomorrow is often the busiest day of the week”, or “If it weren’t for the last minute, I wouldn’t get anything done!” and consider this one, “If procrastination was an Olympic sport, I’d compete in it later!” As is the case with all humor, joking is a way of coping with stressful life situations.  We also know that black and white categories usually don’t hold true.  In the case of procrastinators or planners most of us have some characteristics of both personalities.

The purpose of this blog is not about shame or blame for planners versus procrastinators! Rather it is about looking at how different styles for problem solving affect critical life decisions.  In my clinical work I am often asked by people with clients is it “too early” or “too late” to plan for lifestyle changes related to the diagnosis?  We know that from the moment the PWP hears the words “You’ve got Parkinson’s” life is dramatically changed.  There are cascading decisions that begin as one leaves the physician’s office after the diagnosis is made.  Questions arise such as:  when and how to share the diagnosis, should I continue to work, is driving safe, should I move, when do I explore hiring help at home and how early should I have the difficult discussions about end of life.  That is a lot to consider; fortunately there is usually time to carefully consider options.  Also, it is definitely the case that one size does not fit all.  For example, in the case of sharing the diagnosis, a younger patient who is still working, has very mild symptoms and has young children may make a different decision around disclosing the diagnosis than an older person who is more symptomatic, retired and has grown children.  Eventually, the diagnosis is shared; hopefully once shared the PWP and care partner reap the benefits of garnering important emotional support and practical help.

Let me review in greater detail one decision that is somewhat more complicated than sharing the diagnosis and often a topic for discussion with clients. “When do I need to think about a move?”  This decision brings even strong people to their knees!  Who can forget Dorothy’s famous refrain, “There’s no place like home” (The Wizard of Oz).  Attachments to home run deep; we associate home with raising children, important relationships with neighbors and the neighborhood, family holidays celebrated in the home and that intangible feeling that “Home is where the heart is”. 

There are many factors affecting the decision to move.  The commitment to remaining at home and adding home services, as needed, may work out well.  However, the decision about moving is often motivated by safety.  Older homes with stairs may present safety risks, especially for someone who has a history of falling.  Moving may be related to “downsizing”; part of a process that many begin to consider once children have left the home and the upkeep of the older house becomes a burden. Moving can bring the PWP and care partner geographically closer to where adult children are living. Or, a move to Retirement or Assisted Living helps for better access to supportive services when these are needed. But, there can be many barriers to moving.  I am not surprised when clients tell me, “There are just two things that keep me from making a move: cleaning out the attic and cleaning out the basement!”  The emotional and physical work of a move and cleaning out decades of accumulated “stuff” can paralyze anyone. It is a surprise for some to discover that efforts to “downsize” can mean paying more for a move to a smaller but newer home, condominium or Retirement community. So, how does anyone with PD accomplish this larger than life task?

There is a lot of downside to not planning for this important transition.  The process can begin early.  Some clients talk about starting to clean out closets and the dreaded basement and attic slowly.  Ask for help from adult children, especially since the clean out may include many mementos from their childhood (for example the cherished soccer trophies, or the bag of stuffed animals nobody could part with).  Professionals can be hired to assist with the actual cleaning out of belongings.  They are skilled at not letting the process get bogged down in emotionality, yet sensitive to the process of “letting go” of things (big and small).  A geriatric care manager can help think through the important “where” of a move. 

Friends and family can play an important role with this, too. Creativity is important!  One client moving from a large home to a one floor condominium planned a ceremony to bestow blessings for her new condo.  Following her Jewish traditions she gathered close friends to say the Shehechayanu; a prayer celebrating special occasions. She and her husband wanted more emphasis on the sweet than the bitter of this move.  I ask clients to think about other transitions they have made and we consider strategies they used to get through those difficult times.  It is likely that what helped in the past can be helpful now.  Finally another important tip in surviving the emotional turmoil of a move is to understand that with any transition it is normal to experience a sense of loss over what you are leaving. We all cling to what is familiar.  What we can’t know in making a move are the benefits in the new living situation.  Following a move, one can feel liberated from all of the clutter and “stuff” from the prior home.  A new living space that is accessible, promotes independence, reducing fall risks.   Or, there may be new social opportunities of a move to a retirement community.  If the move puts you closer to family, visits can be more frequent and spontaneous.

While I chose to focus on a move as a major life transition, there are general guiding principles that can be helpful at any decision crossroad:

1. Don’t worry alone. Involve others as you consider options for change.

2. Support groups can be lifelines at decision crossroads. Every member of the group is an “expert” and can share wisdom and experience.

3. Gather information. The best decisions are made with facts; not driven by fears, fantasies or misinformation.

4. Ask for help! You can do anything, but you can’t do everything.

5. Ask members of your health care team to participate in helping you think about changes. How can the team help the PWP maximize independence, while balancing safety considerations.

6. Pinpoint the obstacles for making change and then brainstorm solutions.

7. It’s ok to get “stalled out”; we all need a periodic time out. But then figure out how to get back on track.

8. Decision making is usually modifiable. Consider the metaphor of using a pencil and eraser in your planning (you probably wouldn’t use a pen to work on a crossword puzzle!)

9. Don’t let perfect get in the way of good enough. Often a good enough plan is a starting point. Waiting for the perfect plan can be a trap.

10. Keep humor in your back pocket. Remember these wise words: “He or she who laughs, lasts”. Laughter can be a great coping mechanism.

The ongoing task of care planning in the face of PD is challenging! But you will get through this. I talk with clients about spirituality. Prayer and belonging to a religious community can be important for healing and connection. But I use a broader approach in conversations about spirituality.  I ask the question, “What gives you strength?”  A rich discussion usually ensues. Strength, for some, is garnered by being in nature, or music can help one transcend stress, others turn to gathering the family for ceremony and celebration. There are so many ways that each of us find to cope and remain resilient.  Think about what has given you strength in the past and tap into those resources as you find your way. 
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Lissa Kapust, LICSW, presented at the Fourth World Parkinson Congress in Portland, Oregon. She is a clinical social worker at the PD Center of Excellence at Beth Israel Deaconess Medical Center.  She also coordinates “WellnessWorks”, a series of exercise and education programs.  

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®