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PATIENCE, PLANNING AND SUPPORT: REFLECTIONS ON DEALING WITH AGING FAMILY MEMBERS
reclusive and paranoid, and she did not want to leave their apartment or welcome visitors to the apartment. Our plan to visit them for spring break was canceled because Mom did not want us to come to visit. A full two months before their lease was up for the winter, Mom began planning and packing to return home. An entire month before they loaded the car to drive back to Indiana, she was fully packed. Furthermore, it appeared to be clear from her comments and her packing that she did not intend to return to Florida the following year.
When my folks returned from Florida, Mom continued her paranoia and reclusive behavior. She did not want visitors, and she would not leave the house except for doctor visits. Surprisingly, she would not allow Ann and me to come to spend the night or have a meal at her home. She explained that the cooking, laundry, and bed changing were too much for her. It did not matter that we offered to make and change the bed, bring the food, and cook the meals.
Mom had always paid the bills, planned and cooked
their meals, and went grocery shopping with Dad’s help. However, Dad reported that Mom could not perform executive tasks within a very short time. She could not
write a check, compile a shopping list, or plan and prepare
a meal. On one occasion, they went to their favorite local restaurant (at Dad’s urging), but she could not read a menu or order her meal. These characteristics were entirely out of character for a woman who had been the Clerk/Treasurer of our town and the president of the League of Women Voters and other community groups. She had been the life of the party, but now she wanted to sit at home and work crossword puzzles all day and all evening. In addition, she became paranoid about everything. When Dad would leave to go grocery shopping, she feared that he would die in a car wreck. She feared that they would run out of money, and she feared that strangers, friends, or family would come to their house and steal from them.
As this developed, we knew that something was seriously wrong. With the help of a close friend in medicine, we identified a doctor at the Indiana University Medical Center who specialized in elder care and dementia. With great difficulty, Dad convinced Mom to attend an appointment in Indianapolis (which was 100 miles from their home where we live). I met them for the appointments and assisted my father in explaining the history of her fall and the change
in her personality. After a brain MRI and neuropsych
testing (which Mom resisted), it was determined that she had likely suffered a cluster of mini-strokes at the base of her brain when she fell. The effects of the strokes were not fully reversible, but with medication, she could expect improvement, and they could prevent more strokes.
I will never forget sitting in the meeting and observing
the doctor turn to my father and hand him a three-ring notebook. The doctor patiently explained caregiver fatigue to my father and implored him to take the binder home and study it. He insisted that Dad get daytime help a few days
of the week to stay with Mom so that Dad could take some time off from caregiving. My mother rolled her eyes and announced that they would not need help, that they could not trust strangers in their home, and that they would run out of money if they paid for help. Dad went home and put the notebook on top of the refrigerator and never looked at it.
Over the next few months, Dad did it all himself. He would complain to my sister and me that the act of planning and preparing three meals a day was exhausting to him. He was having trouble sleeping, and his blood pressure began to rise. As it got worse, he would faint when he stood up from a chair, and several times a day, he would regurgitate food into his mouth. He began keeping a paper towel and
a plastic bag in his pocket because the throwing up was so spontaneous. He started losing weight.
All of our efforts to offer help were rebuffed. Mom would protest about having anyone in her home, including Ann and me. Dad would not stand up to her protests because standing up to her made her more upset, and the upset made him feel sick. I reminded Dad about the issue of caregiver fatigue and urged him to do something about it but to no avail.
One day, Dad called to let me know that he had had a minor car accident. He was driving through the parking lot of his local pharmacy when he ran head-on into a light pole in
the parking lot. He told me they must have repositioned the pole or that his car had malfunctioned. The truth was that he was getting tired and starting to lose control of his own functions.
After conferring with my sister, I drove down to my hometown, and Dad and I went to see his family doctor. We discussed the state of affairs, and his family doctor asked him
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