11.05.16 Mary Yamin-Garone, DeMystifying Alzheimer’s:
Good afternoon. Welcome to Demystifying Alzheimer’s. I’m your hostess Mary Yamin-Garone.
Today’s topic is “Handling Sacrifice.”
Many of us carry in our minds a kind of platonic ideal of what a family caregiver should be—patient, generous, understanding and strong. Some of these notions stem from popular images of respected societal figures, such as Nancy Reagan and Kim Campbell standing by their Alzheimer’s-demented husbands. More of them stem from our experiences of how our family members feel about each other and naturally tend to their own.
One middle-aged woman related that years ago, her mother had taken care of her ailing grandmother without complaining. Now that the mother had grown old and sick herself, she expected her daughter to take care of her in turn, without complaining. Her daughter had the same expectation of herself.
Some ideas about what a caregiver should do and be also are rooted in our religious convictions. The mother of a brain-injured teen, for example, reasoned that God had placed her daughter’s disability in her path as a type of moral test she could pass by giving her life over to caring for her daughter.
There are vigorous family members who seem to embrace these caregiving standards. They forge ahead tirelessly over the years, like they were graced with some exceptional stamina. Bound by determination, they remain silent emotionally through long periods of conflict, uncertainty and exhausting work.
Like efficient machines, they seem to function with focused purpose and a lack of reflection. Lifting doesn’t bow them. Loss of sleep leaves them heavy-lidded but unruffled. Whether they don’t feel the personal sacrifices they’re making or simply don’t allow themselves to attend to those feelings, they set a daunting precedent of total immersion in, and dedication to, providing care for their ill loved one.
Such was the case with my father.
Few of us, however, can perform superhumanly for years on end with only our ideals to keep us going. The reality of undertaking sacrifice is that it almost always takes a toll on the caregiver. The more we choose to ignore that reality, the more that toll is compounded. The sturdiest, most gung-ho caregivers may disregard the impact of dipping into their reserves each day until that day, years later, when the cumulative depletion makes them feel sucked dry as an empty well.
It’s like they overlook their stock steadily dropping. Without replenishing themselves regularly, their capacity to keep giving is lowered. They wind up losing doubly. They choose to sacrifice many of their personal needs and freedoms to care for their loved one. Then their abilities to be an energetic caregiver are squandered because no provisions have been made for improving the effects of their sacrifices.
Family members who are less idealistic about caring for a loved one often feel put upon by the sacrifices they have to make. Giving up your time and your identity may be as grating for you as it is for most caregivers. It’s not that you don’t want to do the right thing. It’s that you somehow can’t plunge yourself into providing care without lamenting the sacrifices you’re making. Best case scenario is you manage to balance competing needs. The worst case finds you plagued with anger and guilt, sacrificing your peace of mind and other aspects of your life.
All caregivers—superhuman or mere mortal—must be aware of the toll caregiving takes and take steps to handle the inherent sacrifices. There are several means for doing this. The first is conscious choice. If the younger daughter felt merely coerced into caring for her mother because of the urgency of the situation, her mother’s high expectations of her, or her older sister’s not-so-subtle demands, she’d feel trapped in an imposed servitude. Every sacrifice she made on her mother’s behalf would feel like a statutory sentence of hard labor. But the younger daughter found ways of making choices.
The medical urgency, the mother’s expectations and the sister’s demands were evident. Within the context of those pressures, however, the younger sister defined her commitment. That was to do what she could without becoming depressed. Having that much control over a bad situation removes the sting of coercion from the sacrifices caregivers make. The sacrifices still are difficult but having consciously chosen them to some extent makes them easier to accept.
Another way of handling sacrifice is garnering support. Getting help from others helps you to endure the pressures of caregiving longer. When you try to do it all yourself, you set yourself up for being drained slowly and continually. Like many high-energy, self-sufficient people, my father initially resisted allowing others to handle some of the daily caregiving chores to support him. He envisioned himself as masterfully responsible for my mother’s care. Making personal sacrifices become a subconscious measure of his devotion and degree of control.
On the other hand, accepting help seemed tantamount to declaring himself weak and losing his grip. It was only after I confronted him that he was forced to step back from his caregiving duties to reflect on how the sacrifices he was making were adversely affecting him. He finally conceded to spread those sacrifices around by allowing women from church to help. In the short term, that made caregiving more bearable for him. In the long term, seeking and accepting regular support was a way for him to put water back into the well. Not surprisingly, taking in sustenance is sustaining. He had greater wherewithal to do more of whatever he chose to do over time.
That’s all for today. Thanks for listening. I hope this information was helpful.
Join me next time for more Demystifying Alzheimer’s.