Alpha-1 Advocacy Alliance - Emotional Support

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Group Therapy for
The Alpha-1 Patients and Family

How do we deal with our family and friends denial?

This session is about how do we gain awareness and the ability to accept responsibility to communicate those undelivered messages that we wish had been DIFFERENT, BETTER, OR MORE to help our family and friends with their denial of our illness?

Denial is a term used to describe those having difficulty in coming to terms with a limitation or anything unpleasant. Limitations cause pain, and it is normal for people to protect themselves and their loved ones or friends from pain. Limitations arouse feelings of anxiety, anger, shame, sadness, inadequacy, or guilt. Therefore, any or all of these emotions can motivate us to avoid (deny) coming to terms with (accepting) any limitation of a family member or friend.

Almost immediately upon diagnosis, family and friends become aware of things about their relationship with you that they wish could change. They may wish that they had been DIFFERENT, BETTER, OR MORE. Acceptance of your illness comes slowly, only as denial breaks down and the person feels able to come to terms with the reality of loss (or limitation) and is ready to move on.

Besides ourselves, our family members and friends need to come to terms with the “loss” of the past. We all need to accept the limitations of this illness. Have you, your family or friends worked through this process of loss? Writing in a journal about how this loss affects the following areas in your lives would be helpful: relationships, self – esteem, people, pets, or things, and goals. We all experience loss many times in our lives. Yet, we know very little about recovery from it.

Acceptance by our family and friends of our illness and its consequences is like the grief process. The grief process takes a great deal of courage and honesty by families, friends and us.

The order of the five stages of grief, as identified by Dr. Kubler-Ross, is denial, anger, bargaining, depression and acceptance. However, for the family or friends, the stages may not occur in the same order. While patients start by bargaining as an attempt to replace the lost thing (health) with something else without acknowledging its loss, family and friends may skip over bargaining completely.

We are taught how to acquire things, not how to lose them and do not know how to deal with the conflicting mass of emotions we call grief. Therefore, the process of dealing with loss feels wrong, unnatural, or broken.

Here is a list of some of the emotions we all go through.

Shock – a feeling of unreality occurs.

Emotional release – the awareness of the dreadful loss

Panic – feelings of mental instability

Guilt – over what did or did not happen

Hostility – feelings of anger

Inability to resume business as usual activities – the grieving person's entire being is involved – emotional, physical, and spiritual- focuses on the loss. Grief is a 100% experience. No one does it 50%.

Reconciliation of grief – balance in life returns.

Hope – the pain of grief lessens with plans for the future.

Here are some suggestions for helping your family and friends navigate the journey through the grief process.

Let them take their time. People grieve in their own time and in their own way.

Do not rush decisions on them. The time of grief is a time of instability.

Do not try to hold back crying for the sake of others. Tears are the healthiest expression of grief.

Know there will be good and bad days. Pangs of grief will surface during holidays, birthdays or anniversaries.

Seek out those who will understand your need to talk. Grief counseling is available through community resources and churches.

Here are some suggestions for expressing thoughts and feelings to children about your illness:

DO

Be patient. Allow children the time to think and express their responses to what it is you are sharing with them.

Encourage purposeful conversation, talking with one another to understand what the other means. They are worthy of your time.

Encourage their expression of thoughts and ideas.

Talk to the child honestly, simply, and at their level.

DON'T

Tell a child that their fears are stupid.

Lie or make false promises, “mommy or daddy is going to be fine”.

Push them into talking, but let them know when they are ready you are there to listen.

Deny their feelings, by saying “you shouldn't feel that way”

During the course of your illness and treatment, your physical abilities reduce. The spouse and/or other family members may have to increase their daily responsibilities to compensate. The stress of changing roles can be overwhelming and the spouse may experience stress in a new role as the sole supporter and caretaker of the home and family. These changes can cause tremendous upset and confusion in families. The additional weight of responsibility can overcome family members with little or no time for relaxation, resulting in short tempers or depriving families of expressing their anxieties and fears. It may be necessary to relax stress by simplifying meals, relaxing household standards and giving children and other family members, additional chores to complete. Seek help from an independent source or extended family and friends. Most of all, remember that the family is still a unit.

Grief is the thing that robs us all of happiness and needs to be faced and resolved. As we stated earlier grief is a process and how we grieve is a learned pattern.

By using the following “Loss History Graph”, we learn how we have dealt with losses over our lifetime. Thus, we will understand how and why we are reacting to the latest loss. A partner is required for this exercise. You cannot recover from grief alone. Maybe someone like yourself whom has recently experienced a loss, but definitely someone who you feel you can be honest with totally, and have absolute confidentiality.

Loss History Graph

1. Place a standard piece of paper (8 ½” by 11”) horizontally and with a pencil draw a straight line across the center of the page.

2. Divide your line into 4 equal parts. Divide your present age by two and this will be the halfway point. Therefore, if you are 50 years old, your halfway point is 25.

I___________I___________I___________I___________I

* 25 50

An asterisk (*) on the left end is your earliest conscious memory.

Most of our earliest conscious memories come between ages two and five. This will tell your partner much about your childhood and the surroundings you came from.

3. Set an alarm clock or timer for 1 hour, and begin marking your losses on the line from left to right vertically down (losses can be severe illnesses, deaths, job changes, divorces, weddings and moves). Make simple notes, as you will go into more detail later.

4. Draw lines vertically from the horizontal line down.
The length of the line refers to the intensity of the loss and more traumatic the experience.

Example: I am 64 so my mid-point would be 32. Now my earliest memory of loss was falling on the living room floor of my parent's apartment in Washington DC at age 3, where we lived until I was 5 years-old. The reason I remember the fall was due to the pain of cutting open my knee when I slide across a tack that had been left when some carpet was removed. Since this was my first experience with pain and the fear associated with seeing my own blood I'd say it was pretty traumatic. Thus, the line was very long. How I learn to deal with this loss is significant as I learned to bury my feelings and fears. My Dad fussed at me for running in the apartment in the first place. I learned to grieve alone.

Today, I realize as an adult that in reality it was his fears and guilt that made him excuse the fall as my fault. At age 12 I lost my maternal grandmother suddenly to a heart attack; at ages 21 and 23 though not traumatic in a bad way, I gave birth to my two sons; at age 25 I lost a cousin to a car accident; age 39 I lost my mother to lung cancer; at 41 I divorced my first husband; at 45 I was diagnosed with Alpha 1 and married for a second time; at age 46 I lost my dad to a heart condition and so on……..

Get honest as there are no grades given for this work, no approval is required. Abandon yourself to the exercise and you will receive benefit directly proportional to the amount you put into it.

With your partner agree on the loss that is the most painful to talk about, if more than one, pick the most recent loss.

Here are lists of beliefs we have about grief. They can include:

Bury your feelings

Replace the loss

Grieve alone

Just give it time

Regret the past (DIFFERENT, BETTER, OR MORE)

Don't trust

Be seen and not heard

Protect yourself

Don't get involved, they'll only leave you anyway

Get all you can before it's taken away from you

Don't expect anything

You are probably more aware now of grief and reaction to loss than you have ever been in your life. You have worked on and identified what beliefs influenced you in your Loss History Graph. If you feel you need more professional help seek out a mental health professional in your area.

Next week we will do a relationship graph and learn how to change our beliefs about grief, so you can gain awareness, accept responsibility, and follow through with the undelivered messages we need to communicate to each other rather then adding to our regrets about what we wished was done or said DIFFERENT, BETTER, OR MORE.

Disclaimer: The information presented on askpat@alpha1advocacy.org is not intended to be a substitute for professional medical advice or to replace your relationship with a physician. For all medical concerns, you should always consult your doctor.

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