A caregivers journey is tough at best!

Hello to all! For those of you that see my 'new' arrival to the board, I am Eric's (chemosmoker on the EC thread) wife. I have lurked the halls here ever since my husband joined several months ago now. I am typically a "people watcher" and only speak up when I have something of value to add to the thread, and please know that I am well aware that I see through my own lenses in this life and my opinions and viewpoints are my own. I do not wish to 'influence' others that have made their choices, nor do I wish to 'change' someones mind. I choose to come forward at this point with words of encouragement and possibly some words of insight that may help someone who is struggling to see things clearly.

I am a primary caregiver and support for my husband. My job is to carry out his wishes for his life decisions, when he is incapable or so desires my aide. Whether I 'agree' or 'disagree' with his choices makes no difference in his care as this is his life and he so gracefully and joyfully chose ME to share his life and I chose HIM. This choice alone defined our journey ahead because with this choice was an awareness that it is with each other that we feel safe from all of life's threats. When we married our catch phrase was and still is "bring it on" as we decided to walk through life with a willingness to stand in the gap for one another when need be. I "got his back" and he has mine. Though my husband is terminal (we are all terminal in time) the empowerment of our togetherness has given me the strength and courage to 'know' that even after he has left this place, he has my back. It doesn't take much in the face of trauma to lose all sense of safety and comfort. In the face of trauma we all run on "auto-pilot". But if you have a strong foundation to stand on, even auto-pilot can be met with grace and dignity.

I have read several posts in this forum that have (by my perception)represented a people that are walking in the face of fear and exhibit feelings of abandonment or at the very least the fear of abandonment. I can not presume to know the inner-workings or dynamics of each situation, though I can as a human being have great sympathy and compassion for those that show up looking like a deer caught in headlights. I come forward at this time to speak about my approach. That is one of a caregiver that is committed to being the helpmate giving inspiration to my husband to walk through this storm of cancer with dignity, respect, and most of all empowerment of choice. There is not much in this life that we can truly control, and when given the news that you are terminal or your chances of survival are threatened, our core is rattled and we need to be empowered with control over our choices. This is no small sacrifice to make as a caregiver, though one of the toughest tasks to carry out. We are overwhelmed with fear of the unknown and grasp everything we can to retain our sense of control. This is not helpful to the ones we care for. I came across an article that I would like to share here that may lend some helpful information to anyone reading it.

I want to thank any of you who have chosen to read this post and understand that I am just one in this circle of hope and I too care about the outcome for each and every one of us. With each and every one of you participating in this forum, you have brought forward a sense of community and togetherness, which is very needed in times like these. May god bless each and everyone you with the power to sustain and walk through this storm and to reach the other side with a sense of empowerment.

Take care,
Michelle
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At Home With Terminal Illness
By Michael Appleton M.D.

Control

Behavior and control sometimes influences a person with a terminal illness. They may keep precise lists of their medications and activities, expect caregivers to be punctual and be generally demanding to all of those around them. It's the patient's need for control---or at least the illusion of control---that drives this behavior. People who were insecure and demanding and needed a rigid structure to their lives before their illness are often even more so when faced with dying.

For many people, dying is frightening. We lose much of the control we had in life. We can't do the things we want to do. We become frustrated and in time, may have to place our lives into the care of someone else.

And it is in these times, that both patient and caregivers attempt to exert influence over events that seems disorderly and unmanageable. Patients can appear fussy, unreasonable, and easily irritated when things are in disarray.

Try to understand the fear of losing control that underlies such behavior. Talk about these issues with the patient, or at least bring them up and make an effort to discuss them. It's helpful to allow and encourage as many activities as possible that will give the patient a sense of purpose and structure, and let them hold power over their fate.

When people are sick, particularly our loved ones, it's natural for us to want to do things for them to help make life easier. In doing so, we can contribute to their feelings of powerlessness and loss of control. Empowering people contributes to their sense of self-worth as human beings.

Remember: Enabling patients to retain control is empowering and healing.

Denial

Denial is our emotional buffer. It's an unconscious mechanism that cushions us against the painful events in our life. It's a way we can feel safe from threats to our survival. Some people are able to accept slowly the seriousness of their illness. Others can't seem to accept their dying, and will ignore facts as caregivers and physicians present them, or change the subject. Some patients may accept, to some degree, their impending death, but they can't clearly explain how they feel. Denial may also help some patients [and caregivers] get "over the hump" and through the worst part of what's happening.

Because denial allows us to maintain a feeling of safety, don't "break down" or challenge the patient's denial unless it interferes with the patients ability to function. Often a patient will accept the severity of his or her illness while family members remain in a state of denial. It's best to be truthful, but when a patient doesn't wish to acknowledge information, persisting isn't valuable---it is just a reflection of an unsatisfied need of the person pressing the issue.

Examine who needs to recognize what before continuing with an attempt to destroy a patient's denial for there are times when patients are so overwhelmed and gravely ill that delivering bad new is useless.

If we take away denial, we'd better have something better to replace it.

Family And Friends

Sometimes people who have not been involved in the care of a dying patient try to step in and take control. Usually they do this to get some sense of control, and to ease guilty feelings they may have over their previous lack of interest or participation. These people may inject themselves into the patients management, and generally become a thorn in everyone's side. They may recommend new therapies or new consultations, and push their own agenda for straightening things out. Most people who do this mean well and have good intentions.

Other "concerned bystanders" are simply ignorant, self-serving, or frightened. They will cause turmoil and interrupt the path to a smooth closure for the patient and family.

People such as this are difficult to deal with, and even harder to ignore. It's important to consider with care any suggested treatment changes. However the point here, is that the suggestions from others about treatment, must really answer the following questions:

1. Is this what the patient wants or would have wanted?

2. If we find another medical problem, will it be worth doing more tests and treatment?

3. Will this really make a difference?

4. Since we know the person is dying, will more tests and treatments improve the quality of life? Or will they take up more "living time" and just prolong dying?

Now while keeping the above information in mind, we must also recognize that the family is a basic unit. And within each family, there is a complex system with established interactions, behaviors and responses.

Dying at best, is a stressful situation for all. And relationships during this time of duress may become strained, which may precipitate disagreements.

Also, family members whose contact with those close to the patient has been superficial might arrive on the scene with lots of "advice" on how to handle things. They may feel guilty for not having participated in the family core, and attempt to "take over". In this instance, they need to be advised that the way the patient is being cared for is the best way, and that the current method will continue despite their suggestions.

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