A new video provided by the Alzheimer’s Association, Ouch! That Hurts, presents a variety of scenarios with people flippantly spewing out words generally with no malicious intent in mend. These “innocent” words, however, are not always innocently received or kindly received. While we may joke about forgetfulness and “old-timers”, when one is caught in the throes of Alzheimer’s and other dementias, there is little to laugh about. I don’t mean that we cannot chuckle at aspects of a horrendous situation, knowing that the only alternative is a flood of tears, but we do need to remain mindful of the tragedy of cognitive decline.
People will explain how they don’t go see Grandma anymore because “she just mutters” or Uncle Ben “smells like old socks” or Dad is not interested in any form of conversation because he “just doesn’t get it – we have nothing in common.” Yep, it can be frustrating to have a loved one melt before our eyes, disappear into the depths of loss and confusion, but inside of each one, I believe, love resides. We just have to persevere to reach into the pockets of understanding that remain. A hug, a pat, a kiss, a smile can work wonders to lighten the soul.
A story was related to me about a dear friend who is in early to mid-stage Alzheimer’s disease. I guess he will be in the midst of a recollection, lose a train of through, stumbled on words and then mumble before melting into quietness, perhaps with the hope of oblivion, and eventually he dissolves into tears. To me, the first steps described might happen to any one of use. Our minds are busy, our thoughts are overflowing, and often we are stuffed with stress, worries, and other delightful aspects of everyday living. We are busy. But the last, the tears, indicate that flash of knowing, that milli-second of realizing that all is not well. A similar situation happened with my sister. Although her stories may have meandered with no clear point and no beginning or probable ending, the tears, the sobs, spoke volumes for the mental loss she suffered. Her breakdowns became more and more prevalent in mid-stage Alzheimer’s, then later all flashes of cognition disappeared and all that lingered was a down-turned smile, vacant, non-reflecting eyes, and profound emptiness. My sister existed and yet she was gone. She exchanged her tears for a void. So quiet; so alone; so lost to those who loved her.
When a loved one enters this dark stage which may last 5, 10, or 15 years, we may fill in the gaps of conversation with chatter, we may divert confusion with well-meant distractions, we may chuckle to encourage a smile and to keep ourselves from mental and physical collapse. We may do anything to avert the pain that bleeds from this devastating disease. We may giggle inappropriately; we may run and hide; we may lie; we may curse and deny. Any of these alone or in combination are simply a way to survive. And now you know why I worry so much about my caregivers.
Most caregivers do not sign up to be long-term care providers – circumstances just bring us to the position. Some people are naturals, they sense when to step in, when to side-step, and when to retreat. They can cook, clean, arrange, drive, listen, and seem to never lose a stride. Others are frightened and though willing to help out on Friday afternoons or every other Tuesday, they do what they can but cannot grab the reins full-time. And then there are people who are unable or unwilling to accept the personal care of someone else. No judgment, no criticism. They just can’t. All categories happen, can often be explained, and are simply what occurs. We are fortunate to have our local Humboldt Volunteer Hospice, paid and volunteer caregivers, families and friends who seek training so that they can better attend to the needs of a loved one, and why we have twice monthly respite with Wellness, Art, and Music. So many have the capacity of love and thoughtfulness.
I encourage you to look for ways to help someone else, to relieve the caregiver, to bring a meal to a broken family, to smile and offer a friendly hand. The gratefulness of others builds power, esteem, and character.