My mother has had Alzheimer’s for a long time. We first noticed significant issues with her short-term memory and decision-making capabilities about 15 years ago. But despite this ailment, and because of excellent care, she is remarkably healthy and able to enjoy daily outings with her helpers, sing show tunes, relish a good meal, read her favorite books, and watch nature shows on TV. At each weekly visit she needs a reminder that I’m her daughter, however, and she doesn’t know what year it is, in which state she’s living, or what she just ate for lunch.
If she were able to make decisions for herself, we know that at this point in her life she would never want to be resuscitated, intubated, or hooked up to a machine to breath. We did not intend to subject her to aggressive or intrusive medical treatment, but we were optimistic that after a few days of hospital care she could return to her apartment and have a quality of life close to what she had before this illness.
What we didn’t expect was how detrimental the hospital environment would be to her mental status. In the emergency room, with the help of gentle coaxing and persuading, she cooperated with the blood draws, x-rays, intravenous lines, and scans that were needed to diagnose and treat what was determined to be a life-threatening infection. She received the necessary medical treatment, but over the next few hours she became increasingly disoriented. The combination of her illness, lack of sleep and the constant stream of unfamiliar doctors, nurses and other health care professionals monitoring, assessing and touching her overwhelmed her limited ability to cope. And even though everyone who treated her was unfailingly polite and kind, and painstakingly explained whatever it was they needed to do to help her get better, she became agitated and terrified. Twenty-four hours into the hospitalization she became outright delirious, drifting in and out of consciousness, unable to rest, focus her attention, speak, or respond to touch or voice. She was reaching out with her arms to grab things that only she could see, and her eyes were wide-open with fear and panic.
She was suffering so terribly that we knew we had to get her home, but how to bring her home and assure that she would be comfortable there? After a long, emotional, and gut-wrenching conversation with her long-time primary care physician, we made the most humane and caring, but extraordinarily difficult decision, to enlist hospice in caring for her at home.
With the help of hospice, she came back to her apartment 11 days ago and, while still very compromised, she is recovering. Every day with her is a gift, and we are grateful for this reprieve. Whatever amount of time Mom chooses to stay on, she will spend it in her own home with the people (and dogs) she knows and loves around her.