At eighty-four, my mother (Mimi) fell at home, resulting in both a stroke and a hip fracture. There was no advance plan in place and no preference documented, because Mimi was not one to talk about three things: weight, aging, or death. I never knew whether she considered that kind of discussion disagreeable or simply rude, but these topics were banned. Her silence relinquished control to family.

Without any direction from Mimi, my father (Papa) and I became joint decision makers. This was natural for Papa, as he had already assumed many of Mimi’s responsibilities because of a situation both parents had decided to ignore: Mimi had been experiencing dementia for years. I remember my silent relief as the truth I had long suspected was revealed. Through a series of questions, the hospital neurologist finally brought dementia into the light for Papa. To establish a baseline of information, the doctor asked Papa who did the grocery shopping, the cooking, the laundry, the driving. Papa proudly admitted to doing it all. The physician then asked who had been managing these tasks ten years ago. Mimi. Her dementia became a reality.

Immediate decisions in the hospital were complicated. Mimi was confused, couldn’t walk, couldn’t swallow. In instances of no written direction, hospital protocol is to follow all procedures medically indicated, and this was the situation with Mimi. It was also what Papa wanted: whatever it took to keep the love of his life with him. Without a surgically placed feeding tube directly into the stomach, Mimi would not have survived. She got a new hip, artificial nutrition, and a rehabilitation plan. Each step after surgery was torture. Motivating a confused, frail lady to take a painful step forward took an army of cheerleaders. She could not comprehend what we were asking, but she did respond to the cheers and hugs—so progress was made, one inch at a time. Papa became an expert at tube feedings and I learned an assortment of swallow therapies. Within six months, Mimi regained her ability to swallow and the feeding tube was removed. She learned to use a walker and used it when she remembered. A new normal was established.

Papa was a devoted caregiver. He saw no point in hiring caregivers for Mimi and simply took her around like a child. To my horror, he also left her home alone when he had errands to do. Papa and I disagreed vehemently about his obligation to her safety. I even threatened to report him to Adult Protective Services if he continued to leave her unsupervised. This got me absolutely nowhere. His solution was both stubborn and effective. He would lean Mimi back in her recliner and close her hand around a note that read “Don’t get out of the chair. I will be back home soon.” Remarkably, since she was still able to read, this plan worked. Mimi never had a fall (to my knowledge) when she was by herself.

Time went on, with Papa managing Mimi in a manner that didn’t crimp his active lifestyle. My sister and I helped when needed. A couple of years into his caregiving role, Papa decided Mimi would be easier to manage if he cut her hair like a man’s; goodbye beauty shop. I protested. I knew my fashionable mother too well to accept this solution. So we set up a “spa day” where I would treat her to a shampoo, hair styling, nails, skin care, the works. On one of the days, at the end of the spa routine, my mother took my face in her freshly manicured hands, smiled her beautiful smile, and asked me “Does your mother know where you are?”

When Mimi’s front tooth fell out (as often happens with aging), Papa wheeled her around to show her off. He’d never known her as a child and now, to his delight, she looked just like an adorable six-year-old. His sentiments were endearing, but I knew my mother. Again, she would have been appalled. We had the tooth replaced. Everything was a negotiation.

One enormous negotiation occurred when Papa wanted to vacation outside the country. By then, Mimi was below ninety pounds and had severe osteoporosis. I was happy to stay with Mimi, but I was not happy with the possibility of having to perform CPR (cardio-pulmonary-resuscitation) in case of emergency: One chest compression and her frail ribs would be broken in pieces. Papa at first refused to sign the required form that would protect Mimi from chest compressions. After all, she had given us no direction regarding CPR. Papa had to make this weighty decision on his own. I would not agree to keep Mimi unless he relented. Before he left on his trip, he signed the form.

About five years into Papa’s caregiver tenure, Mimi got pneumonia. Clearly, it was time to talk about the inevitable fork in the road. For health changes, would we go the route of hospitalization or palliative care at home? I was sad that Mimi couldn’t tell us what she wanted, but the whole family believed she’d prefer to stay in her own house. The family shuddered at the word “hospice”. Did that mean she was about to die? No, it meant we would treat all conditions at home and focus on her comfort. There would be no more hospitalizations. Papa decided against antibiotics, but wanted to know what could be done to help her body naturally resolve the pneumonia. We increased her fluids, kept Mimi sitting up and taking deep breaths as much of the day as her little body could tolerate. It worked. The pneumonia resolved and Mimi remained under hospice care for a year and a half.

The hardest time of all came when Mimi lost her ability to swallow completely, as is typical in end stage dementia. Papa had been so dedicated to preparing her favorite foods and keeping her healthy that initially he felt that he had failed. Eventually, he put her to bed for the last time and told her she was going to have the big sleep. That is how she died, peacefully in her sleep.

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