Elder Caregiving:  Navigating a family journey

this article was first published in the Island Word in 2008.

When loved ones need assistance in the tasks of daily living, our most powerful meanings of “family” come to the fore.   Caring for a family member in old age is one of the most complex, demanding, and meaningful experiences that life has to offer.  Like a journey, the caregiving path unfolds in unpredictable ways, with bumps and turns and setbacks, and with moments of exquisite beauty and gratitude.  Whether we embark on the caregiving journey as a single person or as a family, it is good to know what to look for, how to  take stock of where you are, and how to ask for direction and assistance when you need it.


Packing for the journey: What do we carry with us?


Every family has “heirlooms” for the caregiver to carry on her or his journey.  Some of these may be very tangible:  rocking chairs and cradles are tools that pass down generations of young mothers.  But for elder care, mostly we inherit rules, expectations and attitudes.


What did you learn as a child about elders?  Did you have any elders living in your home?  Did you learn to approach them as playmates, or as teachers of skills that you wanted to learn?  Did you learn to be extra polite and careful in their presence?  If they needed physical care, did you learn how to perform this carefully and gently?  Did people take pride in the physical care of the elder in the house?  Or were elders distant from your everyday life?  Did you learn to think of  elders with disabilities as beautiful, pathetic, comical, scary, normal, burdensome, or treasured?


And what were the maps that you inherited for the journey of elder care?  Was it something that only one person did, or did the whole family pitch in?  Was it a one-way street, or did the elder also contribute to family life? Were there times of laughter and fun, or was it always serious and sad? Was it done at home, or did the elder move into nursing care?  And if they did move into nursing care, was this seen as a relief, a tragedy, a betrayal, or just a change?


It is time to “unpack” these early-learned attitudes, and to decide whether to keep them or to replace them as gear for the journey.  We can also “shop” for new messages and attitudes that can help us.   What role models can you find, in your family or elsewhere, that exemplify the kind of caregiver that you want to be? Caregivers have much to teach one another. No two families, and no two cultures, are exactly alike in the tools, and the baggage, that they carry.  Talking with one another widens the options, and it is free!


Planning for the journey


Ideally, every family should talk, perhaps often, about the changes that can come with disability.  This is not an issue for elders only.  Anyone can find their lives dramatically altered with little warning.  Does you family know how you feel about institutional care?  About paid helpers? About family members performing personal care?  Are you all informed of the options for care, and of the supports that are available in your community?  Have you and your family considered the costs—in money and in time and labor—of care at home, in assisted living, and in an institution?


The more we can talk and plan for the eventuality of limited abilities, the less frightening the whole prospect becomes.  Change is inevitable.  Life can be different, and still rich.  Planning make it more likely that we will be caught unprepared, or that we will make ill-informed decisions under stress.  Well informed planning means we are more likely to be able to follow through on our good intensions, and, if not, to be at peace with decisions that become necessary down the line.  No one wants to be left feeling guilty about the care that a loved one received lat in life.  Planning ahead together can make it much more likely that when the end comes, those who loved and cared for the person can say, “we gave our best, and we did well.”


Along the Way:  Challenges, gifts, and respite


Most of the literature on caregiving for elders stresses the idea of “Caregiver burden”.