A Caregivers Story

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A level of frustration is inherent in Alzheimer’s and dementia—not just for the person who has it, but also for that person’s caregiver(s). Until recently, caregivers were advised to “correct” a dementia patient in regard to actions not considered “normal.” Today a gentler approach has superseded this wisdom. For example, a dementia patient, forgetting that he is retired, may begin to dress for work. The old wisdom said to remind him that he no longer was employed. But that’s where the problem lies—if you were getting ready for work and were told that you are not employed and hadn’t been for a number of years, how would you feel? No doubt you would be shaken. So now caregivers are told to “go along” with the patient’s state, help them pick out a tie or what-have-you, and then slowly move the discussion to other matters until the fact that he must go to work slips his mind.

I have a family friend who is a licensed CNA, and an in-home caregiver with over a decade’s worth of experience providing long-term care to dementia patients. Rita’s voice appeals with its rhythmic Irish accent and phrasing; her laughter and graying red curls burst forth from her small frame in spurts of abundance. I spoke with her recently about her personal care philosophy. When I mentioned the above situation, she responded, “You have to let them get dressed for work. You have to let me them go through their moments.” Her philosophy is definitively one of diversion, but she says she came across this naturally, and told me, “The man I look after now is a person. Sometimes he’s going through something or having a moment, but he’s always a person.” She went on to stress the importance of eye contact as she finds dementia patients are “in their own world and they are clinging onto ideas—it’s hard to distract them from that so you need to make sure they really see you.” She went on to explain, “It can be difficult because they are so strong-willed.” I asked how her patient was that evening. She said, “He is absolutely wonderful; I’m holding hands with him right now,” and I could hear her mouth breaking into a smile even over the phone line. This vacillating between great joy and stress seems par for the course for many homecare aides.

Caregiving is truly an interdisciplinary field where science, the mind and the heart have to combine for any real success to occur. Rita’s patient is medicated and his aides overlap at different points in the day to help him with walking. One aide walks in front of his walker and the other on the back. Once during this exercise, a family member was discussing an issue in the family business, and although normally the man would be completely engulfed in the act of walking, he exclaimed in a jovial manner, “Well, it’s my dough anyways!” to everyone’s amusement. I asked Rita how she dealt with a job that can be be rewarding, but is quite exacting on her physically and emotionally. She mentioned attending social events—in her opinion, nothing relieves stress as much as a good party with friends. She also made mention that even her patient was able to attend the odd family occasion, but big crowds stress him as do unfamiliar faces. I enquired as to whether he remembered her—after all, she works there five days a week. “Oh now, I began working here too late. He doesn’t know my name, but, you know what, he is always happy to see me and calls me a nice lady.” And I would have to agree.

Lara Belonogoff

Posted in: Editorials

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