Post-Polio Health Care Considerations for Families and Friends

Post-Polio Health International

post-polio.org  polioplace.org

 
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V. Evaluation of Options within the Family

When polio survivors experience illnesses or loss of physical ability requiring significant care and/or major changes in lifestyles, their families make major decisions. The best scenario for family members is that polio survivors have already honestly communicated their experience of having had polio and have completed the necessary forms designating someone power of attorney for health care and that the papers are readily available. However, if forms for power of attorney for health care are not completed, the following information should help you as your family unit navigates through the decision-making process, or as the group works together to do what is best for all concerned.

Effective communication is key to making solid decisions collectively. Communication styles vary within cultures and families. Some families consider it inappropriate to communicate honestly and directly. In other families, such as when a parent had/has an addiction, family members may not have felt safe speaking the truth for fear of reprisals.

Effective communicators attend to the nonverbal aspects of space, energy and time as well as to their choice of words and actions as they move from situation to situation. Effective communicators are honest, clear and sensitive, showing support and respect for other members of the family.

During discussions, it is good to remember that you only have control over what you can realistically do – how you communicate, listen and respond to the other person. You cannot control how the other person responds.

Beginning a statement with"I" rather than "you" is a straightforward approach that invites open and direct exchanges. Saying "I disagree" rather than "You're wrong" is not blaming or accusatory, and as a result, can reduce defensiveness and conflicts.

During a crisis or when discussing the future of aging polio survivors, children and spouses can struggle with anticipatory grief – a feeling of loss before a death or dreaded event occurs. Anxiety and dread are the worst symptoms. Hospice groups have developed suggestions for dealing with anticipatory grief, e.g., talk with a trusted friend, give yourself permission to cry, keep a diary, utilize your hobbies, etc.

Out of necessity, many polio survivors have been "in control" of their activities and surroundings. They have mastered the art of thinking ahead and planning for all possibilities. When they are ill and no longer able to fulfill that role, others notice a gap and the family decision-making process changes.

PHI's survey revealed that many survivors are confident that their spouses who have for years accompanied them to physicians' appointments are well equipped to advocate for them. Children of survivors who have been through a crisis with their parents have issued a caution regarding aged spouses. Their intention to be involved with health care decisions and actual personal care of their loved one can be curtailed by their own health problems and overwhelming emotional feelings. The spouses may need the support of their children to be the advocate the polio survivor wants them to be.

Polio survivors in our survey were clear that as long as they were able to make decisions they wanted to make them. They wanted to be given options and to be involved in all of the decisions, and didn't want their families to "give up" on them. Noting that their families watched them closely, one stated, "I sometimes worry about what's happening to me that is invisible to them."

A few didn't want to "be a burden" to their children and indicated that they could do it alone, or with their spouse's help. While admirable, this attitude may not be realistic or even beneficial to the family's emotional health.

One daughter revealed the challenging times she faced as she and her father changed roles. She found that "the more Dad revealed to me about his experiences as a boy, the more I understood the reasons for his strong reactions. Then I was able to provide him with comfort and support."

Some polio survivors have an aging parent who can become very distressed during a medical crisis of their child who had polio at a young age. This parent has unresolved guilt about their child "getting polio" and new illnesses spark these feelings.

Lastly, another important family dynamic is the relationship among siblings. The children who live the closest in most cases assume the bulk of the practical day-to-day responsibilities. Tension can arise when brothers and sisters from afar offer well-intended suggestions to those already overworked. Conversely, some children with the major responsibility can feel abandoned if their siblings don't show enough interest. Each familiy needs to find its own balance. Putting yourself in the other's shoes is a good place to start.

One wise survivor stated, "Complaining is not an effective strategy."

More ...

Effective Family Communications: Do We? How Can We Improve It?
(PHI's 10th International Conference, 2009)

Family Communications Worksheet (PHI's 10th International Conference, 2009)

Not Going Is Not an Option (Post-Polio Health, 2010)


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