CHRONICALLY ILL
FOR BETTER OR FOR WORSE: This excellent book on A Couple's
Guide to Dealing with Chronic Illness has some excellent comments about all
the issues a caretaker might face, the issue of children and how they deal
with the stress, friendships, the patients point of view, etc. They'll be
quite a bit of these comments in this newsletter. First is the commentary
about the dependency of the patient. The author, Beverly Kievman, noted,
"don't massage their dependency needs. Only take care of the physical necessities
that the other person literally cannot take care of himself. Shelly Cox,
author of "If You Meet Buddha on the Road- Kill Him", says that whenever
you do something for people that they could do for themselves, you have
diminished them in some way. We tend to diminish disabled people by thinking
they can't do things for themselves, physically and mentally. In other words,
do not protect them from things that might be unpleasant for them"
As for caretakers:
1. Continue to work as much for your spouse as for yourself.
2. Accept the limitations. If some of the expectations and realities are no longer possible, then you must accept them as loss and grieve.
3. If you are a woman, do not be afraid to continue your career. When a man's wife becomes ill, no one expects him to give up his job in order to stay home and care for her. But when a woman's husband is struck down, society sometimes condemns her for carrying on with her career
4. Allow your spouse to become YOUR caregiver. Imagine the renewed sense os strength and pride he or she must feel by being able to repay for what you have done. (I actually saw this happen. A woman suffered from severe depression for years and years and had to be institutionalized for awhile. No attempt in making her better ever worked. Through it all, her husband did the best he could in maintaining a positive outlook, but finally it took a toll when he had a heart attack. Low and behold, she recognized that now she had to take care of him and her whole attitude and capabilities changed dramatically. It seemed to point out to me now that perhaps she put too much reliance on him and he did not force any issue with her- to the detriment of both. Kievman's comments really put that in focus.)
As regards the patient, they noted that many people, who had held major
positions, felt an extreme loss of POWER. That seems most evident to all
of us. But hat I had not put into focus was that the chronically ill also
felt a loss of OPPORTUNITY. They were not going to be promoted, they were
not going to be able to travel. And worst of all for many, they were not
going to be able to have children.
TRAVEL HELP: The International Association for Medical
Assistance to Travellers has a brochure that lists English speaking physicians
all over the world. 736 Centre St. Lewiston, NY 14092. 716 754-4883
CHILDREN OF THE CHRONICALLY ILL: Considering the emotional
state that many children are in growing up, particularly teenagers who are
just coming into their own, the emotional stress of a chronically ill parent
can be almost unbearable. As Kievman points out, " kids will do almost anything
they can to medicate themselves out of the mood that they are in, whether
with drinking or getting involved prematurely with sex or taking drugs. Any
kind of behavioral disturbance in kids- truancy or declining grades or increased
drug or alcohol use or irresponsible behavior with cars- is a way the kid
is trying to cope with the stress, anxiety, pain and parental preoccupation
with the illness."
"Depressive equivalence" is often seen in children. The following are warning
signs
She suggests keeping an open pipeline of information and education going.
"If you are already overloaded and don't seem to have the time for your children,
make sure that someone else is available- a favorite uncle, or a grandparent"
"Educate your family about the illness and the accompanying strain. Involve
your children in the caretaking to help them feel a part of a solid family
structure". "Inform the school so that teachers will be sympathetic and realize
that the children are going to be in a fragile emotional state." "Whatever
the age of your children, periodically take the emotional temperature of
each one."
INHERITANCE: This is the tacky part of a parent dying, but
nonetheless reflects the real world. Kievman notes that "money, particularly
inherited money, is a concern that begins unconsciously creeping into everybody's
mind whenever a parent is sick or dying. Left to its own devices, it can
become an evil and insidious matter that can permeate all relationships within
the family. If one grown child takes on more than his or her share of helping
with the caretaking- whether for reasons of close proximity, better abilities,
or a greater share of responsibility- it is natural for the other children
to start to worry about their inheritance. The chief worry is usually that
the care giving child will wind his way into the heart of the sick parent
to the extent of affecting the will. Meanwhile the care giving child resents
the siblings who don't help, and so the stage is set for some serious family
strife". "You must thoroughly investigate all background scenarios and figure
out what might backfire. You need to recognize that what the children are
feeling is a fear of losing what they think should be theirs." Her solution
is to "clearly address the subject well ahead of time. Sit down with your
children, preferably one on one, and your sick spouse if possible, and discuss
the issue of money." (You should consider this even if healthy since inheritances
cause tremendous friction.)
FRIENDS & RELATIVES: The support of friends and relatives is vital to both the caregiver and the chronically ill. Kievman notes
CAREGIVERS: "Caring for a person with chronic illness is a stressful, long term commitment. You cannot put every ounce of your energy, day after day, because you don't know how long your caregiving will go on and how much stamina will be needed over the long haul, you need to pace yourself. You must learn to conserve energy for important activities and to use outside help from the start so that you do not wear yourself out. Temporary relief and emotional outlets are essential, yet caregivers are often reluctant to do anything for themselves".
"As a caregiver, you have a special need to focus on yourself now and then. Those caregivers ....... who had outside interests, a strong support system of friends and physical or creative outlets were those who were coping the best. Those who had sacrificed everything to the needs of their husbands or wives were living in a cocoon of despair."
"Physical exercise burns off all those negative emotions and leaves you feeling
calm and yet alert, relaxed but energetic."
MORE TRAVEL HELP: The Society for the Advancement of travel
of the Handicapped helps travel agencies make arrangements for accommodations
to suit disabled persons. Outward Bound has outdoor adventure programs for
the disabled. Access America: An Atlas and Guide for Visitors with Disabilities
gives details on thirty seven National parks.
COPING: "Many of the caretakers who weren't coping were
those who made little effort to get themselves out of their rut. They found
numerous excuses to avoid outside help. They shunned support groups, counseling
and often even contact with friends, or if they did take advantage of the
outside sources, it merely was to unload. They had nothing positive to offer
and were not receptive to ideas that might improve their lot."
ETHICS COMMITTEES: (Ethics on Call) If there is a reason for someone in your family to be "judged" in regards to care, you might ask
1. Does this institution have an active ethics committee
2. Who sits on the committee. Who is the chairperson
3. When does the committee meet
4. Will its members be discussing my case, and if so, when
5. Is there a way I can request that it consider my case
6. Can I be present for that discussion
7. If not, how can I be certain my views will be presented to the committee
8. What happens if my case comes before it
9. What is my role in this case
10. What does its recommendation mean to me