The Emotional Roller Coaster Of Chronic Illness

"Peace Lily" by Helen Forsyth Richardson

by Jose Olmo

My father was always a good provider. Whenever my siblings or I needed anything, he was always there. There was never a doubt that our father could always make even the worst of situations better.

In his sixties, my father fell ill, and as the illness progressed, elements of his independence started slipping away. While my siblings and I tried our best to cover those physical needs that he was no longer able to take care of by himself, we didn’t really consider the emotional toll this was having on him.

As time passed, it seemed like my father was on a roller coaster of emotions. One day he’d be determined to hang on to any piece of independence he could manage, while the next day he’d feel guilty that he wasn’t contributing to the family in the same manner he always had. Other days he would just be angry and sullen, ready to throw in the towel.

As I built a career in social work, this experience with my father always remained in the back of my mind. I saw more and more families struggling while caring for an ill relative and it became clear that the feelings my father experienced during the last years of his life were completely common. In fact, it’s very much to be expected when someone so full of vigor is suddenly dependent on others for every little need.

Although common, these rapidly changing emotions can make being a caregiver harder than it already is. For many adult children, being there for their parents as they age can be rewarding. Of course, at the same time, it is also a challenge. In addition to tending to their parents’ needs, caregivers are often the sole provider for their own children, holding down a full-time job and managing a household on top of their caregiving responsibilities. The sad fact is, with all these obligations, caregivers often neglect themselves, their own needs, their own happiness.

When I meet with families struggling to help an aging parent who is experiencing a loss of independence, I often refer to my own experiences with my father. I explain that this is a period of adjustment for their aging loved one, and that it’s important to be sympathetic, but never patronizing, to his or her plight. I ask that they put themselves in their loved one’s shoes and try to understand how it might feel if they were suddenly unable to do the things they’ve always known and loved.

Of course, a change of emotional perspective is much easier to endure when you know it’s only a temporary exercise. Therefore, it’s vital for caregivers to recognize and understand the three stages of emotion that people go through when undergoing a major lifestyle change:

  • Guilt — At the onset of an illness or life-changing event, people tend to feel sorry for themselves and guilty that their loved ones are burdened with their problems. My father was always the strong one in our family. It was his job to care for my mother and us kids. Yet, rather than recognizing his illness as a part of the aging process, he blamed himself for not taking better care when he was younger, not preparing himself for such an eventuality.
  • Anger — Once feelings of guilt subside, anger often sets in. At this point, the a sick or aging loved one has had to face their own limitations and they feel as if they’re losing control over their own lives. Frustration sets in at this phase, and emotional outbursts can be frequent. My father was used to being independent, so he would often lash out when he felt trapped or frustrated, even at those of us who had his best interests at heart.
  • Reconciliation — At some point, an aging loved one will most likely come to terms with his or her new lifestyle and accept the help that is offered. For many, this is a time to make the most of one’s remaining years with the people they love. My father understood that his situation was not going to improve greatly. So, rather than wasting his remaining time fighting and complaining with everyone around him, he accepted help and was able to better communicate his needs.

Again, caregiving can be an extremely difficult job, especially when your parent or relative is strapped in tight to that emotional roller coaster. But by taking the time to consider what they’re going through, to imagine yourself in their position, you’ll be better equipped to give them the physical and emotional support they so desperately need in their remaining years.

Jose Olmo is a clinical social worker with Family Centers. Serving Greenwich, Stamford, Darien and New Canaan, CT, as well as Westchester County, NY, Family Centers is a United Way, New Canaan Community Foundation and Community Fund of Darien partner agency that offers counseling and support programs for children, adults and families. For information, call 203-869-4848 or visit www.familycenters.org.

The photograph “Peace Lily” was taken by Helen Forsyth Richardson.

 



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