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She Had a Stroke a Year Ago 

One member’s journey taking care of his wife.

Married for 40 years. Loves his wife. She had a debilitating stroke. She basically needed some level of assistance for all activities. He somehow managed to care for her by himself twenty-four hours a day, seven days a week, for an entire year. He had to quit working to do it. The process was devastating for both of them. Home health did nothing to address his or her needs. He exhibited a vast majority of burn out symptoms. She was admitted to the hospital six times that year. Twice for major surgeries from falls and fractures. During our first visit with him and his wife, just validating his experience caused him to cry three different times. 

The burden of care, mentally, physically, emotionally, and financially had reduced it until he kept her in bed all but four hours a day. A talented, loving, capable, engineering Rice graduate, unable to cope with the massive burden that engulfed him. No one helping. No children. He played in our church band for 16 years. Became a participant when one of the Ministers caught what sounded like a cry for help on a Facebook thread.

How lonely was his last year with her? How much guilt? Guilt stems from doing what you think is the wrong thing, not doing what you perceive to be enough, or otherwise not behaving in the "right" way, whether or not your perceptions are accurate. How about the multiple fractures to the person he loved and was caring for? Six hospitalizations? How much of that did he internalize? It is an especially corrosive emotion because you're beating yourself up over faults that are imagined, unavoidable -- or simply human. What about this one…resentment? Caregiver resentment is especially felt toward the person being cared for, when the caregiver's life feels hijacked by the responsibility that is out of his control. Without enough support or non-caregiving outlets, feelings of being ignored, abandoned, or criticized can fester into anger and depression. What about worry? Good intentions, love, and wanting the best for your loved ones are the wellsprings of worry. Focusing intensely on the what-ifs provides a perverse kind of comfort to the brain: If you are worrying you are engaged. Of course, that ultimately triggers more worry because it is engagement without accomplishing anything. 

Loneliness? Did his world shrink almost before he realized what had happened. Did his friends back away out of uncertainty of not being wanted. Did the intense demand on his time lead him to drop out of outside activities (yes). Since he was dealing with cognitive impairment like he was (with her), the loss of the loved one's former level of companionship is another keenly felt loss adding to a plethora of other negative things. Finally, how much grief did he feel? Although most people link grief with death, there is a thing called anticipatory grief. It is a common emotion felt by caregivers who are coping with a loved one's long-term chronic illness, especially when there are clear losses of ability (as in dementia) or when the diagnosis is almost certainly terminal, or when the loved one is not going to get better. Long good-byes can trigger guilt as well as sadness if one mistakenly believes that it's inappropriate to grieve someone still alive. Was it all of these that gave rise to his depression? These are just some of the thoughts that come to mind from his situation. He was so ready for HELP of any kind! There was no church support the preceding year. His wife died within 4 weeks of the Church’s first visit.