Intrusive Assumptions

Facebook is famous for quizzes to find out silly and random “facts” about ourselves.  Quizzes determine which Bible character we are like, what our favorite song reveals about our personality, or even the color of our soul.  Recently, I saw a quiz that would determine which friends will take care of me in 2016.  With a quick scan of my Facebook presence, the quiz returned a list of five friends who will “step up”.  If only it were that easy to determine who can step into the role of caregiver.  My husband was not among the five friends which is curious since he would be the first person in line to take care of me in 2016 no matter what life throws at us.

This quiz got me thinking about the randomness with which many people approach the need for personal caregiving when age or health undermines our ability to care for ourselves.  In my work, I see people of varying ages in many different stages of chronic illness. In my family and community, I see the same.   When I meet with families who are trying to determine their next step after age or health has altered their loved one’s course, I often hear that the first choice is remaining in their home.  It then becomes my job to “intrude” on their personal lives to help them decide if that really is the right/best course of action for them.

Since beginning Caring Choices, I’ve heard the word “intrude” from a handful of people, as in:

  • “I wouldn’t want to intrude on their personal decision.”
  • “I wouldn’t want to intrude on a family matter.”
  • “Asking questions about [their situation] would be intrusive, wouldn’t it?”

To a degree, I can understand the hesitation to “intrude.”  Typically intrusion is from the perspective of outside, looking in – someone outside of the situation, being afraid to ask questions or offer assistance/guidance/suggestions.

But what happens when the intrusion is generated from the inside outward – much like the Facebook quiz that chose my 2016 caregivers for me – without asking important questions like “who will do what.”

We should not assume that our Facebook quiz caregivers (or other family/friends) will be able or willing to handle the demands of caregiving.  Yet, many people make this very assumption.  The act of caregiving is a huge commitment.  Caregiving runs the gamut from picking up prescriptions or groceries to preparing three meals a day to providing a bath to administering medications via a PICC line to very personal hygiene after elimination.  Not everyone is comfortable with every aspect of caregiving.  To assume that others will “step up” can be an intrusion.  Certainly friends and family do step up when they are needed.  I’ve seen this.  I’ve done this.  But there are also times when friends and family are not able to manage caregiving amid their own life’s demands – job, raising children, their own illness.

The best way to avoid the randomness of caregivers is to have conversations with people you care about.  Talk about who can pick up the groceries and how often.  Determine who is available to cook/provide meals and when.  Pull together a schedule so you all know whose turn it is.  Find out who is comfortable and able to give you a bath or change your soiled sheets or, literally, wipe your behind.  Seriously, these skills and abilities are not present in everyone’s toolbox.  The less prepared we are for the caregiving role – as either provider or recipient – the more awkward and intrusive the caregiving becomes.  Put a time table to the chores of caregiving.  How long will you need someone to do “X”?  What happens when they are no longer available?  Who will you turn to when family and friends have burned out?

Caring Choices knows that staying in our homes is the optimal choice for most people.  If you want to stay in your home, make a plan now that makes that option feasible.  Don’t simply rely on the random availability of family and friends.  Family and friends may not be able to meet all of your needs 24/7.  They may not be comfortable providing certain kinds of care.  Begin conversations now so that the roles of caregiving are carefully considered. Know before a need arises who can help you and in what ways.  Planning now can alleviate the intrusive worry of needing or providing care.