In 1996, my mother, Phyllis, passed away. The last two years of her life held several hospital stays and an every-lessening level of energy. My responsibilities as her full-time care-giver were minimal. They mostly keeping the house clean, taking her places including the grocery store and appointments with her doctors. At 76, she had called me and asked me to try to get a hardship transfer to a nearby facility so I could help her out as a care-giver. My father, whose eyesight was diminishing because of Macular Degeneration. Other vision issues simply refused to admit he couldn’t see well enough to drive any more. She felt the stress of riding with him to town for shopping and medical appointments was aggravating her condition. Her doctors all agreed.
The Decision to Move
You see, Mom was one of the very first pacemaker patients in the US in the 1960’s. Her heart would race, then her blood pressure would drop causing her to faint. She agreed to see a doctor about it because of the embarrassment she felt when she fainted while out with friends. For the first ten years she had to go through replacing the baseball-sized unit under her left rib cage with a week-long hospital stay. In the late 1970s, the doctor told her a new one had been reduced the size of a cigarette lighter and would fit under her left breast. The first one would have to be removed in a hospital stay since the old, large, flat disk under her rib cage had been there so long, cartilage had formed around it. After that, the unit could be changed and checked at her physician’s office.
A few months later, she was given a large brief case with a phone in it. She didn’t have to come into the office every two months to have it checked. If they were on the road traveling in their new motor home, she just had to call in from a telephone and follow the complicated instructions to send the data to the doctor’s office. Yet, even with a pacemaker, there was more going on. The pacemaker corrected the slowing of her heart assuring she had no further fainting spells. That made her quite happy. Not to mention basking in the glow of being a minor celebrity among their friends.
The Nature of Her Condition
The atrial fibrillation, however, continued to grow in intensity over the years. It became permanent. Doctors attempted, with what was available at the time, to slow the rapid beat of the upper chambers of her heart. Nothing reduced it. Eventually, over another 18 years the rapid beat finally caused an vein in her brain to rupture. She died about three days after the aneurism happened. The doctors waited 72 hours after brain death to turn off the still operating pacemaker.
Mom had a difficult time the last ten years of so of her life. The stress of the A-fib and the enlarging of her heart created a stress level that caused her to break out in shingles regularly. The medication to help that didn’t come out until a while after she passed either. She and I talked frequently about what happens after death, the pain of her enlarged heart, and her feelings about the multitude of hospital stays she’d gone through over the years. As a care-giver, I understood some of what she felt and expressed. We talked about that, too. I wanted to understand her mindset so much.
Understanding comes with knowledge. It was difficult to vocalize. A friend who had been a long time care-giver to several older members of her family taught me how to use empathy as a replacement. For me, true understanding of how she felt physically and her fears didn’t fully develop until very recently when I myself found out my heart is experiencing similar issues.
More on that in later posts.