The nurse’s note read, “not orientated to place and time due to dementia.” Several hours of general anesthesia for a knee replacement and then morphine via a patient-controlled analgesia pump had not been kind to my father’s brain. Age 88 at the time, he had never shown any signs of dementia. Yet, with the patient-controlled analgesia pump turned off, he was quite confused. His mental state fit the description of dementia, the proper term for loss of cognitive function. But dementia isn’t episodic.
Little did I know that my father had already started down the road of dementia and the medication was hastening his journey. Memory loss is supposed to be a normal part of aging, but it’s elusive. You can’t see it, but you know changes are happening.
It’s not that you’re writing more lists, but that you don’t remember that you need them. Or you write and rewrite lists without remembering why. Or you put the list in your pocket and forget it’s there, only to find it and not remember why it’s there.
Dementia, the quiet thief, robs you of your lucid moments and your memories of people, places, and events. Ultimately, it robs you of your dignity. Some people are masters at hiding their memory loss. Several years passed before I realized the cunning coping skills my father had been using. He had always been someone who joked, so it was easy for him to pretend he didn’t know certain things. My mother, on the other hand, readily admitted that she “couldn’t remember a darn thing anymore, and it was very frustrating.”
Usually, parents don’t ask for help. Instead, children respond to the voice inside that dictates the need to help. But caregiving can become an unexpected second career on top of an already challenging and time-consuming one. If you find yourself juggling these two careers and you have siblings, consider care for dependent parents to be an equal opportunity experience. As the healthcare professional, you may feel a greater pull or sense a higher expectation, but that doesn’t mean you must do all the work or sacrifice more than your siblings.
More than two-thirds of adult children who act as uncompensated caregivers for their parents are women. Perhaps they are filling the traditional female role in families. Perhaps, because most elderly people needing care are female, same-sex caregiving is more common. But the responsibilities, no matter how great or small, often result in physical, social, or emotional stress. And women shouldn’t be the only ones doing the juggling and carrying the burden.
Recently, I participated in a discussion called, “Parenting up and down,” an apt description of the sandwich generation’s experiences. We discussed the guilt of taking charge and making decisions while questioning whether we’re doing so for our parents’ sake or our own. We also talked about the challenge of dealing with still seemingly independent adults who don’t recognize—or admit to—their mental and physical decline. We want to care for our declining parents, but in today’s society, uprooting them from familiar surroundings and friends can be bittersweet.
Some people describe caring for elderly parents as a joy—an opportunity to give back or to rediscover special people in their lives. On the other hand, caregiving for parents who exhibit mood swings, aggressive behavior, or other less desirable characteristics can lead to anger, isolation, and feelings of being unappreciated. The joylessness of these relationships only adds weight to the caregiver’s burden.
I no longer get frustrated when I try to converse with my parents. I try to find little surprises to share with them. I don’t ask them yes-or-no questions anymore. And sometimes the only answer to my questions is: “I don’t know.” Often, I have to infuse some reality into the conversation and answer the same questions I answered last week, and the week before, and the week before. I have to assure my mother that no one has stolen her prized possessions.
Unfortunately, what I can’t tell her or my father is that the quiet thief has left his calling card. They wouldn’t believe me.
Pamela F. Cipriano, PhD, RN, FAAN, NEA-BC