Independence Days

We have lived next door to Sara, our 91 year-old neighbor, for several years now and we have always known her to be a very independent, active and healthy woman who drove around town in her little red car between senior centers and shopping malls.

Two weeks ago, Sara’s daughter Carol knocked on our front door.   She was distressed because Sara was in ICU.  Only at that point did we learn that Sara had not been feeling well for some time, but since she had no specific complaints she saw no reason to bother anyone --  including her physician.  Sara also had a friend with similar complaints who was diagnosed with cancer; for Sara, the fear of discovering that she, too, might have cancer prevented her from taking action.

 Sara and her daughter had been out to lunch when she became acutely ill and she was rushed to the hospital.  After many tests, Sara was diagnosed with a bleeding ulcer and required multiple drug transfusions.  She is now stable and will be returning home in several days.  The thought of Sara going home alone terrifies Carol, for good reason.

Sara has always been determined to remain in her home, alone, despite her increasing age and her home’s increasing hazards.  Her children and neighbors are willing to help with anything that needs doing, but Sara is unwilling to make the changes that might make her safer in her home.  Several times a day, she climbs the steep stairs to her bedroom despite everyone’s expressing concerns about the risk of falling.  Sara’s bathroom is on the first floor and an unused parlor off the living room could be converted into a bedroom, but Sara won’t hear of it.  Nor will she get an emergency alert system – even though her hearing deficit makes contacting her a frustrating and fearful experience at times. Sara is fully aware of the risks she is taking; she doesn’t want to cause concern to her children and neighbors, but she values her independence above all else – and for Sara, independence often expresses itself as a defiant resistance to change. 

Carol feels terribly guilty that she did not recognize something was wrong with her mother.  But Carol also feels frustrated.  Because her mother is completely resistant to adjusting her living conditions, Carol is having to radically alter her own lifestyle, incorporating much more frequent “check-in” visits with Sara into her daily routine. 

Many family caregivers grapple with a common reality:  their aging, disabled loved ones desire their independence at all costs – and quite often to the point of open defiance and illogic.

The hardest thing for us to accept is that unless our loved one has cognitive or physical disabilities that prohibit them from living alone or unless their living arrangements have been warranted legally unsafe, our options for intervention are extremely limited.  We cannot force a change in their living arrangements; we cannot mandate common-sense safeguards.  As a result, poor outcomes that could be prevented – such as injuries, falls, and emergencies – occur. 

We can easily feel guilty that we aren’t doing enough.  Our guilt rapidly deteriorates into frustration and anger that we just can’t convince our loved one to change and adapt.  Left unchecked, these emotions can sour our relationship with our loved one.  We need to recognize that we are reacting to our own guilt.  Then we need to figure out what we can change and what we can’t.  If we can introduce incremental change into our loved one’s household or routines, we should do so.  But the reality is that we will not control everything, or even most things, in their lives.  And if serious consequences occur, we must learn to forgive ourselves and our loved ones.

Sometimes, the very best we can do is love someone enough to let them be as independent as possible for as long as possible.  That’s not an insignificant gift, because it usually comes at great cost to our own peace of mind.