GRIEVING DISCUSSION BOARDS > Caregiver Support Discussion

Making Peace with Time

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dsmyer1:
As family caregivers, aren?t we so often at war with time? When serious and life-limiting illness strikes, time seems to be an adversary who is standing in between us and all that is most important.  It can be the opponent that is racing against us as we travel from our loved one?s bedside out to work and then back to the bedside. Before we have done all that we wanted to do for our loved one, time has moved on.

Time, in its scarcity, often brings urgency.  It threatens to leave before we have said all that we need to express to one another as a family.  Our loved one may begin to tell us that he or she does not have much time left.  Our health professionals may be pressed for time. Missed time from work brings insecurity. We often think we do not deserve family leave time, respite time, or time off just for ourselves. Medications, doctors? appointments and treatments on a strict time schedule may further increase the sense that time is speeding by.

In circumstances of serious illness, time may reveal the severity of our loss. Over time we may see declines in our loved one?s abilities. We may race against time to be by our loved one?s side at the end of life. With declining cognitive and communication ability, our loved one may lose the ability to tell us their treatment preferences and wishes.  If we wait to have that important conversation, we may run out of time.

If time seems to be outracing you, you aren?t imagining things: time surely is at a premium when a loved one is depending upon you.  So is it possible to make forge a truce with time?  How can families dealing with serious illness and life limiting illness negotiate a new relationship with time?

Here are four approaches for making peace with time, as discussed at Our Roundtables for Families and Friends:

Observing time.   It may be necessary to accept the tension between ourselves and our time.  This is a time to observe and rediscover how long it takes to do the things we must do everyday.  With fresh eyes we may need to discover how long it really takes to prepare meals, and how it really takes to travel from place to place.  Sometimes caregivers find it easier to recruit some help from others in the family when they can state with clarity that they have timed their tasks and simply cannot get everything done in the time allotted.

Refocusing time.  In an article entitled Hope in the Family Caregiver of Terminally Ill People, by Kaye Herth, (1993, Journal of Advanced Nursing, 18, 538-548) time refocusing was one strategy that fostered hope in those caring for a family member with a life-threatening illness.  In her interview study, family members were seen to revisit their understanding of the ?space, span or focus of time.?  They would let go of looking back or into the future; instead, they choose to live one day at a time, or one hour or moment at a time.  They would measure time in terms of the special events in the life of their family, such as graduations.

Quality time.   We must set aside special times to connect with our loved ones and ourselves.  While we can, we might take the time to celebrate the loved ones we are caring for and commemorate their accomplishments.  Today?s special moments become our treasured memories in the future.  When we need it, we must ask for help and carve out quiet time for ourselves.  This might include asking our employers about family leave and our health care providers about respite care. As mentioned above, it might mean telling family and friends that we cannot do it all and need some help.
The following are two information resources on respite care:
http://helpguide.org/elder/respite_care.htm#  helpguide.org
http://www.aging.ny.gov/NYSOFA/Programs/CaregiverSvcs/Respite.cfm  New York State Agency For The Aging.
Here are two information resources on the Family Medical Leave Act:
Office of Labor Relations  http://www.nyc.gov/html/olr/html/faqs/man_family.shtml#2   
Department Of Civil Service  http://www.cs.state.ny.us/attendance_leave/spec_notes_fmla.cfm

If there were a universal hallmark experience of living with serious illness, it is likely to include the phrase ?not enough time.?  Now all who are at the Roundtable are invited to consider your own experiences with time.  How do you live in a way that prevents time from becoming a hated adversary? Do you agree or disagree with the possibility of observing time, refocusing time, or finding quality time? Are there additional strategies for making peace with time? How are your facing time, in all of its scarcity and limitation, as well as its richness and value?

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