Disability interventions are always difficult. Family and friends are well meaning, but our relationships with them are complex. We don’t want to scare them, but we need their help. How can we negotiate the changes in our abilities brought by the Disability Monster?
I recently took a friend to the hospital. He had all the signs and symptoms of an impending heart attack. He kept saying over and over again, “I don’t want to be a burden to anyone. “
As his friend and a physician I could not live with myself if anything happen to him. His not wanting to be a burden troubles me. I too had not wanted to ask for help as my Disability Monster reared up. As a man and a professional I was to be the leader, the strong one. Yet, there are times we must ask for help.
Friendships are easier to deal with than family relationships, especially with family members with whom we live. They depend on us and us upon them. We have many roles in the family. Others depend upon us to perform those roles. We expect them to perform their roles too. When a spouse cannot pick up the kids after school, it puts that burden on the one who can. Occasional inabilities to perform are roles are expected. We all get ill or have unexpected interruptions and demands.
When one member of a family cannot be depended upon things get complicated. Much has been written about the family dynamics around an alcoholic. Other behaviors can also create similar situations. A physical or mental disability that requires others to provide some sort of special care certainly causes changes in the family.
We often experience this when a family member gets ill. If an elderly family member has a stroke others will come to assist. Then pain has to be dealt with. In the United States our healthcare system can provide some support. When intensive personal care is needed nursing homes are often used. They are impersonal and most people prefer to be at home. Then greater demands are made on the family. Old squabbles come back.
At some time many of us have cared for an ill family member; we know what those demands are. We don’t want to place long-term demands on anyone. When someone had a cold or flu we trusted that they would get better. We could look forward to a return to normal. With a long-term illness we can’t expect the old normal. We don’t like the current situation, and want the burdens to lessen quickly.
When we are the ones making those demands we have many feelings. Like my friend we might feel ashamed and a burden. We can no longer feel proud of whom we are. We often fear abandonment. We know of families who could not cope with someone’s sudden illness. Will this happen to us?
Since we are now the ones who are dependent, we must depend upon the reactions of others. If they cannot meet our new needs how will we get them met? Our self-confidence is being tested. Do we really want to go back and create a totally new life? We know some changes are now necessary.
Do you share your struggles? Do you share your fears? If you do so what will happen? These and other questions swirl in our minds.
In coming blogs I will share some of my experiences and insights. I would love to hear other stories as you or others confronted their disability monster in the context of their family and friends.
As All Ways, Seek Joy,
Coach Dr. Dave
Author of the forthcoming book, “recipes for lemonade (thriving through disability): Dr. Dave’s personal recipe”