Chapter 2; Guilt, forgiveness and an inner light

There is no force more stifling than guilt and no force more freeing than forgiveness. After pulling up to the physical therapy atrium entrance, Pati exited the passenger side door, positioned her walker and made her way into the check in area. Her son, Tom, home on leave from his second deployment overseas, pulled the car away and parked it. Her daughter, Susan, just beginning high school had started her day earlier when the activity bus picked her up for swim practice. Since receiving a diagosis of MS 4 years ago, Pati had spent each day dealing with a progressive decline in her ability to handle usual activities of daily living. What used to be active inolvement in swim team activities and homework had become a delegation of cooking, cleaning and coaching to her son and now her daughter. She missed the meet in which her daughter swam a personal best in the 100 breast and qualified for state. She missed her sons graduation from basic training and subsequent deployment. Their understanding nods at her explanation of absence belied deep disappointment. Since their father had left 2 years ago, not willing or able to understand her disease and even less willing to become a caretaker, the children blamed their mom. “If only she was healthy dad would have stayed”. So Susan grew distant and Tom had set off to find an identity for himself in the absence of his father.

Susan became embarrassed of her mom. The few times Pati entered the high school, Susan did not want to be seen with her. The walker made her seem old, she thought, and it would be embarrasing if she was to trip and fall. This embarrassment caused Susan to become less and less concerned with her mom’s maladies. So when Pati started to complain of abdominal pain and fever, Susan thought nothing of it. The next morning as she was preparing for school, Susan noticed her mom was not moving about. As Susan entered her mom’s bedroom she knew something was wrong. She did not respond to calling out of her name and when Susan made her way to her mom’s beside a strong shake on the shoulder only prompted a groan. Susan quickly called 911 and the medics arrived in minutes and after assessing her and setting her on the stretcher, transported her to the ER where a preliminary screen showed evidence of a bladder not emptying well and a secondary bladder infection. Pati had a bladder infection, fever and associated acute renal insufficiency and needed to stay in hospital for IV fluid and antibiotic therapy.

Tom arrived shortly and joined Susan at the bedside. They were shocked at how sick their mom looked and began to get a sense of her functional decline. Pati was still delirious and not able to communicate effectively but her condition weighed heavily on the siblings. Both of them were angry at themselves for their apathetic rather than empathetic attitude. Susan felt guilty for not checking on her mom sooner and for taking too long to call for help. This guilty amplified her real fear that her mom may die and that it would be her fault.

Caretaker guilt is a destructive force when left unchecked or unresolved. It can prompt avoidance of discussing advanced care directives and living will issues as well as cause family members to press toward futile care in order to avoid the sense that “I was never there for the illness so I will not abandon them now”. On the other hand being a caretaker is difficult. Despite ones best intentions, the constant strain of monitoring, lifting, responding and worrying can cause the caretaker themselves to suffer spinal compression fractures, fatigue and depression. Where then does resolution come from? From all aspects of forgiveness. Realizing that the illness is not ones own fault, that progression of the illness is caused by nature and not lack of nurture and by clarifying expectations and limits. If illness begins to prey on ones sense of abandonement, that needs to be addressed.

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