Family roles and responsibilities in families with a disabled or special needs family member.

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Family roles and responsibilities in families with a disabled or special needs family member.

Giving care to a disabled or special needs family member brings stress into the family. It changes the family system and family roles. It changes family responsibilities - who will be taking care of and responding to what special needs of the disabled family member. Family relationships - how each family member relates to all other family members.

When a family member begins requiring daily care, "tried and true" family roles are often used first as a way of coping with the new situation. In fact, sometimes caregivers who find themselves caring for a disabled family member automatically start to act like a parent.

Other traditional family practices may also appear. You may, perhaps, be guided by a family role that names you as the person who is supposed to provide full-time care for any ill or disabled family member.

Other family members may not have these same "family assignments." They may not feel as responsible as you do. They may feel they aren't as close to the care receiver as you are.
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Brothers, sisters, children and in-laws may be frightened by the illness, or feel uncomfortable around the care receiver. Some may not want to "interfere" with what you've already planned or decided. Or you may unwittingly discourage their help by presenting an image of "having everything under control."

Family conference

Sometimes clear-cut family roles can help everyone know what they should do for the disabled family member.

Delineated roles and responsibilites can provide order and structure to what often seems to be chaos around the disabled family member. But no one should accept any role unwillingly; everyone has a right to say no. If you accept the role of caregiver, you should feel free to request significant help from family members inside and outside the household.

Family conferences can be helpful in sorting out the expectations each family member, including the disabled or special needs family member, brings to the situation. These can be good times for everyone to communicate. Family conferences are also a good way to make long-term plans for the disabled family member, for sharing information and feelings, and for planning emergency or vacation backup for the primary caregiver.

Family meetings can be awkward, especially for people who haven't talked easily or openly about family matters. Talking about feelings or the need for help is difficult for many people.

Unresolved conflicts or long-standing grudges among family members can resurface. You may end up arguing more about incidents of long ago than talking about your family member's needs.

Problems between parents and adult children, siblings, spouses or even extended family members can reignite. Feel free to seek outside help to resolve old issues. Clergy, social workers or counselors are often able to help.

The time spent healing wounds is worth it. The success of a caregiving plan increases when family members are able to express their feelings and help shape the caregiving plan.

Organizing the details of family roles and family responsibilities

Usually a family meeting will be called either by the primary caregiver or another member close enough to see problems that need to be resolved.

One family member should take responsibility for leading the meeting and make certain everyone knows what help the care receiver needs.

Family members need to decide how to share responsibility for meeting these needs.

There are many ways to divide tasks: by specific need, by interval of time, by ability to provide. You might label a chart: care receiver needs; caregiver needs; resources. Then appropriately list the amounts of time, money, talent (i.e., cooking, nursing skills, companionship, transportation, etc.) and other items under each title.

Assigning each person the responsibility for meeting one specific care need can be an effective way to divide responsibilities.

For instance, a brother might arrange for transportation by getting a bus pass, arranging volunteer drivers, or driving himself. Another relative might take charge of handling bills and finances.

Someone else might accept responsibility for researching alternative housing options should the care receiver's needs change.

With luck, some of what's needed will be volunteered without prompting.

Young children need to know how they fit in, especially if the care receiver lives or moves into their household. Children might, for example, help grandparents eat, or read their mail and the newspaper to them. But be open to changing.

Making all the major decisions involved in a care plan can be a big task. You might create several contingent care plans to choose from later if there are changes in your care receiver's condition or your family's situation. Or you might decide to try one care plan, but plan regular meetings to review and revise it.

Who's in charge?

There is usually one primary caregiver. That person usually becomes the in-home case manager and switchboard for information.

Unless otherwise arranged, that person coordinates the care plans decided on by the family.

Changing roles and responsibilities in families with a disabled family member

When you become a caregiver, you will probably find that you will have less time for your children, parents, spouse, siblings or best friends. Your energy and interest for projects or activities you used to enjoy together may diminish.

As caregiver, you may have to take on additional financial burdens and may be emotionally upset at the physical or emotional decline of the care receiver. All these stresses affect immediate family.

The caregiver and immediate family should discuss the anticipated changes created by having the care receiver in your home. Communicate this early before tempers flare and resentment flourishes. Consider how household routines will change: fixing and eating dinner, house cleaning, grocery shopping. All of these and more may have to change because of new responsibilities.

Also consider how recreational activities and time together may change. You may have less time for walks after supper with your spouse, boating on Saturdays with the kids, or family camping trips.

The caregiver, family members and the disabled family member will all encounter new situations in their new roles. Working together as a loving family is the best way to plan and work for change that will be most beneficial for all.

Delicate Threads: Friendships Between Children with and without Special Needs, by Debbie Staub, is the culmination of years of careful observations of friendships between seven pairs of children - each with a child with a moderate to severe disability - who are classmates in an inclusive elementary school.

The interactions give readers a rare view of the nature of these friendships, how they develop, their impact on the children involved, special needs relationships, how the families and teachers perceive them and contribute to their success or failure.