Long, drawn out terminal illnesses present their own unique grief
challenges. The very names of diseases, such as Cancer, Alzheimer,
Parkinson, or AIDS for example, strike terror in our hearts because of
the suffering and mortality they often conjure up. Cancer, for example,
will be experienced directly by one out of four persons and one out of
two of these will die from it. But its effect does not end here. Still
many more family and friends will be touched by those people living
with cancer and so on. Resources, professionals, institutions, energy,
and finances, will also be drawn into the struggle with this disease.
Education is important as are research and healthy life styles.
Likewise, many medical and scientific gains have been made in this
area. Some forms of cancer are curable, especially if caught early, but
there are so many different types of cancer that we still remain
anxious. Some treatments are conventional and others unconventional.
Stories of long time survivors bring us hope, while deaths of friends
and acquaintances reminds us of fatality. Such is part of the backdrop
that we encounter in dealing with grief issues unique to such long term
illnesses.
Sometimes there may be a lot of emotional and psychological pain
attached to seeing and caring for a person who slowly deteriorates and
changes from a strong vibrant person to a weakened, pale shadow of
their former self. Likewise, it is painful to think that our loved one
may be experiencing actual physical distress. The deterioration
evidenced can leave the family feeling useless and helpless, especially
when the dying person does not even recognise their own spouse or
children. Modern medical treatment goes a long way to controlling with
pain medication the physical suffering and symptoms. Likewise, a total
approach by the medical and care-giving team ensures that many of the
non-physical needs are also met.
There is a positive outcome of much of the newer directions in health
care with its stress on the individual. Movements such as palliative
care and hospice make the individual and their family the centre of
medical care and not the illness. This stress on the individual rather
than the disease is a healthy perspective that reflects the dictum of
William Osler: "The person who has a disease is more important than the
disease a person has". The philosophy of palliative care is to provide
pain control and stabilisation and its approach is multi-disciplined.
Likewise, hospice carries on the palliative care mandate by providing a
haven where people may live with their disease in a positive,
life-affirming way, that celebrates their relationships and worth. The
emphasis is on living and not dying, on enjoying the time left and not
bemoaning it.
With a long term illness there is the 'benefit' of time for both the
person living with the disease and the family and friends supporting
them. This is 'advantage' or 'gift' of time allows anticipatory grief
to begin and the putting closure and the letting go become positive
activities that all relationships can be directly involved in. By
anticipatory grief we refer to the fact that many of the same stages
that happen in the bereavement process often begin earlier while the
loved one is still alive. There is still much debate about the state of
anticipatory grief but enough is known to assert the reality that it
plays a therapeutic role in the overall bereavement process. The past
and the present are also grieved, as well as the future There is even
the beginning of a future detachment, not from the present care of the
dying person, or with the past remembrances, but rather with the coming
reality and understanding that the loved one will not be around to be
part of such activities. It is still a shock when the eventual death
occurs, but much less so than in the a situation of sudden loss or
unexpected death.
This time also provides opportunity for families to express their love,
resolve unfinished business, and say their farewells. Practical
realities such as a will, advanced directives, assigning of special
objects to different family members, and sorting out one's affairs can
actually contribute to the peace of mind of all concerned and very
practically avoid later legal and financial confusion. As well, funeral
arrangements, organ donation designations, celebrating and affirming
family relationships and friendships, are all part of the opportunity
that such a longer term of time affords. One of the worse feelings that
occur after a death is that of helplessness. The time afforded in a
long term illness allows everyone 'to do' something positive for their
loved one; this is perhaps why such a period is so valuable.
Finally, if we are people of faith, we are able to turn to our
beliefs for comfort, meaning and support. Prayer, scripture,
meditation, and one's religious community and clergy can give a peace
that transcends suffering and pain. Ultimately one of the strongest
drives experienced is the drive for meaning. Within the mystery of
tragedy, suffering and pain we learn to say yes to life and love.
A long term death can be painful but the discomfort is tinged with the
value of the grief work that can occur during such a time if positively
engaged. In truth, grief after a long term illness will be greatly
modified by the bereavement work done during the illness by all
involved.
Community Resources
Depending on your locale, some support sources may not be present. A
family doctor, mental health centre, hospital, social worker,
counsellor, clergy or your funeral director can assist you with an
appropriate referral in these cases.
ARK - Counsels children and teenagers who have experienced the loss of a parent through death or divorce
HOSPICE - Supports the dying person and their family, before, during and after a death.
W.H.O. - Widows Helping Others - On-going support group
Suggested Reading
There are many books available on this topics. The following are a few that I recommend.
Carroli, D. Living with dying: A loving guide for family and close friends, McGraw Hill, 1985.
Freese, A., Living through grief and growing with it, Barnes & Noble Books.
Grollman, Earl A. Time Remembered: A Journal for Survivors. Boston: Beacon Press, 1987.
Kushner, Harold. When Bad Things Happen to Good People. New York: Schocken, 1981.
