A caregiver’s challenge
To the editor:
A former college coach was fighting late stage colon cancer. By chance, I ran into him at a college track meet and was curious how he was doing. We talked for a few minutes; then I asked him, “ How’s your morale?” He enthusiastically replied, “My morale is great.” Then he paused, and said with a wry smile, “What’s my other option?” His words have stuck with me.
My wife suffers from severe dementia, so keeping a positive attitude and high morale is important to me. I am her full-time, in-home support system. Kaye was diagnosed in 2008 and since that time, her condition has steadily declined.
As the coach was confronting terminal cancer, my wife is facing her own incurable demons. Like water droplets eroding a hard surface, Kaye’s dementia began imperceptibly and eventually transformed into irreparable neurological damage. Sadly, there are no miracle cures.
Dementia comes in many forms with Alzheimer’s being the most widely known. Initially, the red flag was mild cognitive impairment, but in time, the whole central nervous system succumbed: Poor balance, impeded gait, unreliable visual recognition, awkward speech and word formation, incontinence, and an array of fine motor dysfunctions. Kaye cannot zip her jacket, put on her shoes, nor write her name.
Care giving is the act of helping to meet the needs of another person. It involves altruism. Rarely is full-time care giving easy. Believe me, it is certainly not the same as chaperoning. Keeping a positive attitude and high morale is essential for me to effectively carr yout daily tasks.
Dementia-caused behaviors defy logical sequential thinking. Here is a sampling. My wife cannot distinguish one person from another; we are all strangers to her. On medical visits, Kaye typically refuses care, e.g. flu shots, mammograms, or stepping on a scale to be weighed. If Kaye would be sick, she cannot accurately convey the feeling of pain or discomfort. Without provocation, Kaye is sweet and gentle one moment, and angry or upset the next.
In Kaye’s world, physical boundaries are quite vague. Kaye wanders off and on three occasions the local police assisted in tracking her down. On one day, she innocently entered into a neighbor’s house uninvited. She occasionally reaches out to touch a stranger while in the supermarket. Kaye moves items in our home to odd locations, e.g. banana peels into the toilet, toothpaste to the sock drawer, and sofa cushions into the garage. Mysteriously, some items are never found.
Kaye was an artist before her decline. She was a member of a respected art gallery, illustrated two children’s books, completed large Aboriginal “dot paintings,” and was a highly creative individual. Today, that artistic expression is nonexistent since she lost most fine motor control. I am one of the few people around who still identifies Kaye by her past accomplishments, rather then by her present health deficits.
Caregivers often become isolated. In our situation, the combination of incontinence and wandering-off make distant travel very improbable. We usually stay in town. I hire a person to be with Kaye for a few hours each week so I can go to the library or mow the lawn. This is helpful, but it is no panacea. This “free time” does not expand my world nor offer much rejuvenation.
One question I am often asked: Is Kaye aware of her dementia condition? Honestly, I am not sure. When diagnosed at age 61, Kaye certainly knew what dementia entailed, but she courageously showed no fear or anxiety. At that point in time, she was still relatively high functioning: she was diving a car, using the computer, and reading a newspaper.
How long can I continue being Kaye’s sole caregiver? This is the unknown. At some juncture, full-time institutionalized care may become necessary. Having long-term responsibilities with no ending point in sight does produce caregiver stress. So, I continue moving forward one day at a time not knowing what tomorrow will bring. As the old coach indicated, “What’s my other option?”
Todd Russell
Presque Isle
