My last blog discussed the difficulty in making a transition back to the family home because of Parkinson’s Disease. In that entry, I discussed the relationship challenges such a transition entails. In this entry, I want to discuss the loss of independence.
In some ways our Western ideas about independence are a part of a devastating paradigm that produces unnecessary guilt when we must live with family. We equate a return to the bosom of our family as failure. We are relinquishing control of our lives.
In truth, there is no loss of independence, only an illusion of such. This is because independence is a relative term. It exists only to the degree we are able to negotiate our environment in an effective manner. To have the maximum level of independence, we must always negotiate with our physical, emotional and financial limitations.
For example, take an individual who has been paralyzed below the waist by an accident. This individual would find walking impossible yet a wheelchair could easily provide mobility lost through misfortune. In light of this individual’s physical condition, the wheelchair maximizes the independence available to this person. Certainly, it confines the body but it extends the possibility for this person. It provides independence.
Or take a parent with failing memory and growing confusion because of dementia. It is very difficult to argue that this person can live without assistance. That ability has been compromised by a disease process. If that person comes to live with an adult child, independence is provided. This independence is not at the same level it might have been historically, but given the cognitive compromise, it exists to the greatest extent possible.
The absolute nature of independence is a Western illusion, one that many world cultures find puzzling.
I once worked with a very gifted man of Asian heritage who was forced to live with his family because of a rapidly deteriorating case of multiple sclerosis (MS). He was profoundly unhappy that a promising career in research had collapsed because of the disease and deeply mourned the reality that he would never marry or have children. However, at no point did he ever describe living with his family as a source of emotional pain. He never viewed himself as a burden or dependent. To the contrary, he was most grateful that his family was there for him. MS served to rob him of mobility, which in turn limited his ability to live independently from his family. However, his family allowed him to function to the best of his abilities, to maximize his independence. In their world view, this is what families do.
In interest of full disclosure, I live in a multigenerational household. My in-laws live in our walkout basement, which we built into a comfortable apartment. They sleep there but it would be inaccurate to say they live there. They are a welcome and important part of who we are as a family. I was born and raised in our Western culture but when I married into an Indian family, I became part of something larger than myself. There was never any question that my wife’s parents would live anywhere but with us. We are a family and because of this bond, we have a level of independence that most of my friends would have a very tough time understanding.
I am not engaged in romanticism as I write these words. There are many moments of conflict and competing needs, of wounded feelings and misunderstandings. These are part of the life of any family. However, in return for these inevitable bumps in the road, my wife and I are both able to devote more time to our careers without worrying that our kids will be home by themselves. We are not “Soccer Parents” in a harried dash from sports, to band, and a myriad of other activities. Rather, we are willing partners in both of our sons’ emotional growth. The partnership includes their grandparents.
We are all independent.
When a person moves back “home” because of PD, there are two ways to view the event. One can mourn the loss of independence that was, in truth, already compromised by the disease. Or one can view the move as an effort to obtain the greatest level of independence available in the face of the challenges PD brings. It will be necessary to negotiate how this independence is shaped and there will be struggles.
The world we live in has drifted from the traditional role of family and because of this we see ourselves as dependent when we are forced to rely on our relatives because of challenges to our health and well-being. I think it is a pity and I consider myself a very lucky man for having learned that when it comes to family, no one can ever be a burden nor can they be dependent.