Over the years, I’ve watched family caregivers perform heroic acts in caring for their loved ones. I’ve seen spouses and adult children give up their work and social life—and essentially any semblance of freedom—to devote themselves 24/7.
Many of these individuals began their caregiving journey years earlier, perhaps somewhat in the dark about the changes that would occur as their loved ones’ physical, mental and personal needs increased. These caregivers continually added more duties to their plate, often more than any one person should ever be expected to do.
I’m both reassured and troubled by this phenomenon.
I’m reassured in knowing that the human spirit has such capacity for understanding, compassion and responsiveness to another’s needs. I’m troubled because I know this situation will affect more and more people as we live longer and diseases take over.
Caregivers often say it’s just what they do and who would do it if they did not? And in many cases that’s true. Situations are often such that caring for a family member at home (with or without extra help) seems to be the only possible solution.
So how do caregivers recognize the moment it all becomes too much for them to handle?
A recent study by the National Institutes of Health notes that caregiver burnout is the primary reason leading to the placement of a loved one in a facility. According to the study, caregivers’ reasons for placing a loved one in a facility include the need for more skilled care, the caregiver’s health, the patient’s dementia-related behaviors and the need for more assistance.
The study demonstrates that demanding tasks associated with caregiving take a tremendous toll on a person’s quality of life.
As the daughter of a mother who is at her breaking point in caring for my father, I struggle with how to help both my mother and my father through this incredibly difficult situation.
My father’s needs are now well beyond my mother’s capabilities, even with extra help and support. Placement in a facility seems like the best option.
To quote a recent paper on the treatment of advanced Parkinson’s disease, “There comes a time when it becomes too difficult to manage all these complexities at home. Patients and caregivers become overwhelmed, often with unnecessary catastrophic consequences.”
However, the article further states, “Institutionalization typically follows the dramatic period of declining health and diminished ability to cope. Unfortunately, medical facilities are unprepared to accommodate the needs of the neurologically frail and complex PD patients. For most persons with advanced PD, the quality and dignity of a life at home are much superior to what they can ever expect in a nursing home.”
So, whose needs do we take care of—the needs of the burned out caregiver or the late-stage Parkinson’s patient?
It becomes something of a Sophie’s Choice, a heartbreaking situation in which a person must choose between two equally distressing alternatives.
I’m troubled because I see the future. An increasing number of families are going to need to make this type of decision, and many may have no choice at all because finances don’t allow it.
Some may wonder why caregiver support centers, like Senior Concerns, exist. It’s for exactly these reasons. Caregivers need support and options before caring for a loved becomes too much and they are forced to make a difficult decision in a time of stress.
When caregivers need a place to turn for help and guidance, caregiver support centers are there for just that. Most importantly, the centers are there so the caregiver does not have to feel alone in difficult times.