The waiting game: Limbo and terminal illness


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The waiting game:
Limbo and terminal illness
by Deb Sims , MS,RNCS,LCSW
There is a period of time of waiting that always happens when someone is
about to be diagnosed or waiting the results of a test or the outcome of
an intervention. 
We call this being in a state of limbo.  You suspect something is wrong but you don't have any answers.  You're just waiting.  You are wondering is this a gain or is this a loss and how bad?

The feeling of being in limbo is itself a loss. You have no control at that time. For some people the feeling of not knowing is the worse torture of all. During this period nothing can be done.  You can't start grieving. You can't start treatment.  You can't work on preparing for the future because you have no direction to go in.

What are the signs of being in a limbo state?
  • They are very much like being in a state of loss. Both family members and the person suffering will experience these signs.
  • Feeling helpless, fearful, worrying all the time, empty, irritable, angry,
    restless, pessimistic, sometimes hopeless and guilty
  • Experiencing a loss of concentration, interest, motivation and fatigue
    Changes in appetite, sleep patterns or sexual drive
  • A tendency to have less energy and make more mistakes because of
    decreased concentration or movement
Aren't these also signs of depression? 
Yes. The difference is the degree of incap-acitation and the length of time.  With limbo, eventually an answer will come.  Then a direction can be chosen to go in.  Movement or action eases the symptoms because something at least  is being done.
If these symptoms last beyond two weeks and are incapacitating to the point that they interfere with daily functioning, it is time to suspect Clinical Depression. This is especially true if suicidal feelings are present also. Then it is time to talk with a professional (a therapist or physician) about getting help for the symptoms. We'll refer more to how to treat Clinical Depression in another article.
Aren't these symptoms the same as grief symptoms?
Grief is not an illness but a normal life event and reaction to loss. However, the duration of time, intensity, circumstances of the loss and the persons own ability to understand what is going on, determines how they will handle it.   Some people need to seek the help of a grief counselor immediately, a support group, web site for education, or a physician.
Most of us understand that a limbo state will have an end. We will have an answer.  Eventually, there will also be an easing of the grief process down the road. This may though take quite a while. The intensity of symptoms or the development of clinical depression determines the need for therapeutic intervention.
Aren't these the same symptoms as anxiety? 
Anxiety can come out in many forms, including physical symptoms. Anxiety has a lot to do with feelings of safety and fear.

Some of the symptoms are:
  • Insomnia, an inability to sleep because of worry about
    the future, or fear that you'll die in your sleep
  • Physical symptoms: such as an anxious feeling, headaches, stomach distress, fatigue
  • Panic attacks
  • Shortness of breath
  • Lump in your throat
Some of the symptoms are conintued:
  • Feeling of impending doom
  • Dizziness
  • Heart palpitations
  • Worry that the symptoms may mean that you have the same thing as your loved one who is ill has or who has died
The best thing to do is to check these symptoms out with your physician.  Prolonged grief can decrease your immune system and you may become ill easier. So ruling out a true physical symptom is important.
How to cope?
Limbo states do end.  When you find out the answer then action of some sort can be taken.  Even if that action is preparing for the inevitable.
Depression can be helped.   By talking, re-framing things in a more positive way, taking action, relaxation techniques, possibly using an anti-depressant medication, recognizing that this is related to the grief and understanding the grief process, depression can be decreased.
Anxiety can be helped, also.  Talking with someone, being reassured that there is no physical cause, exercise and again medication can ease these symptoms.  
At this point I'm referring primarily to the family member of someone ill or who has died.  
If it is the person who is terminally ill, then relaxation techniques, music, talking, reduction of pain through appropriate methods, meditation, preparation for the future, understanding what is happening, support from family and friends can all help.
Coping with your family?
If you are the one who is sick, it is important to tell your family how you feel. Talk together with your family as early as you can about your wishes and desires.  That way you can work together to remain as independent as possible as long as you can. Know that self-pity is inevitable at  some point. You may feel it or your family members may feel it.  
During the limbo stage when you are waiting, family members may be more optimistic than you are.  They may not yet be able to  face the possibility or by nature not panic until word comes.  They may go the other direction and be fussing over you as if the worse news has come and it hasnt yet.   Again, the more you talk honestly about your feelings the better everyone will cope.
Eventually the limbo will end and you will know what you are facing.  At that point, you will have  entered another stage.
  • In a state of worry, I wait
  • Wondering what my future holds.
  • I am terrified, I am afraid.
  • I am scared that I won't have that chance to gracefully grow old.
  • Time moves slowly in this unique state.
  • And what else can I do but pray and wait.
  • I'm in limbo.
Debbie Sims is a Certified Clinical Nurse Specialist in Adult Psychiatric Nursing, has a Masters degree in Clinical Psychology, is a Licensed Clinical Social Worker, and a Licensed Marriage and Family Therapist. She maintains a private practice in counseling but her devotion is to her position as Editor for Beyond Indigo an Internet web site for those who are grieving.