When a family member faces a chronic illness, the entire family structure is rocked to its foundation. The inevitable life changes occur in stages, and we can adjust to them more easily if we recognize these stages when they happen. Having experienced the trauma of my husband’s paralysis following surgery, I have learned to identify three major levels of adjustment. It is important to acknowledge these and understand that we have choices at each of these levels.
The first level of adjustment is accepting the responsibility for our family member through the initial medical crisis, release from the hospital and beyond. The momentary pleasure of having him or her home is soon replaced with abject fear of the enormous job ahead. No instruction manual is sent home, and even the simplest tasks take on Herculean proportion. The types of choices to be made include personal care needs, everyday household management, a plan for disease management, and the level of physical activity permitted. Fortunately, help is available though home health agencies and community programs.
The second level is the reorganization of the home – physically, financially, and in the roles family members play. When our loved one arrives home, it may be necessary to make alterations to accommodate a wheelchair, lift, or walker.
If our loved one has been the main breadwinner, the family’s financial support will suddenly fall to someone else. Major role changes are called for. Both the care recipient and caregiver will feel insecure at first with the loss of the old roles and uncomfortable with their new roles, until they become more familiar.
The third level is the most difficult level of adjustment. Caregiver, care recipient, and other family members must accept the changes this new situation demands. In time, this regime becomes normal. But at first, everyone is in shock with the realization that their circumstances are permanent. Acceptance will come with time, if the family works together.
The entire family must take a proactive role in seeking out educational and support resources and accepting the family’s reconfiguration. This journey will be easier and more productive when everyone concentrates on where you are going, rather than on where you have been.
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