She arises very early each day: usually between 3:30 am. and 4:00 am. It doesn’t matter if it is a weekday, the weekend, or a major holiday. A sense of mission, of duty, and of love and devotion motivates and fuels her engine.
Her husband awakens later and joins her for breakfast. Sometimes it is quiet. Sometimes there is conversation about the days planned events. Hands are held and admiring glances are exchanged. By 6:00 am. and, after a kiss goodbye, she makes her departure.
It is a 12 mile drive to the place where she begins her “work day”. The place is called the ACC or Asian Community Center. While originally opened primarily as a care and nursing facility for Asian Americans, the ACC now houses and welcomes all nationalities. Mother has advanced Alzheimer’s Disease and has been a resident now at the ACC for just over 3 years.
Mother will awaken this morning, like most of her mornings, to the encouraging voice and loving attention of her youngest daughter. After warm smiles and reassuring tones, mother is gently prompted to wake up and begin her day. A soft washcloth is applied to remove overnight evidence of Mr. Sandman and freshens up the rosy color in an 87 year old face. Next, the tousled white pillow hair is carefully brushed and coaxed into place. The better to be more presentable should company come calling unannounced.
Incontinency announces its presence and it is time for a change. Diaper removal, cleanup and redressing a bedridden patient demands a lot of time. Sometimes, a new bodily function begins before a change out is completed. Back to square one. None of it phases mother’s morning provider.
Small talk is exchanged between mother and daughter. Daughter offers warm praise and encouraging comments. Mom struggles with her words and sentences. Some words are clear and distinct, but most of what mom attempts to say is unintelligible. For the daughter, the language shortcomings are no obstacle, since she has compensated in her ability to read her mother’s moods and body language. Mom also seems to have compensated for her degraded cognitive skills by learning to read the messages her daughter’s posture, tone and face are conveying. Thoughts and feelings are now shared without a spoken word.
The breakfast tray is delivered to the room at 7:15 am. Though all of the items on the tray are pureed to facilitate swallowing, they all have been carefully presented and sculpted in a way so as to resemble the original item; whether it is a pancake, oatmeal, or an egg sunny side up. Feeding mother can take some time, often running 30 to 45 minutes to consume all or most all of what she has been served. On some occasions, mother is not in a equitable mood: resisting or only reluctantly taking in her beverage and meal.
Those who have progressive difficulty swallowing their food require extra attention and observation. Mother is one of these kinds of residents.
Sometimes, mother awakens in a crabby or fearful mood: resistant to being moved or adjusted in her bed, resistant and uncooperative when being changed due to incontinence. Whether combative or cooperative, it makes no difference. The youngest daughter remains cheerful and reassuring in coaxing her mother into gentle compliance. With the selective use of good humor, lots of smiles, exaggerated funny faces, and lots of positive reinforcement, the daughter coaxes and invites willing cooperation where there first was none.
The youngest daughter spends 4 hours per day on average providing diligent and loving care to her late stage AD mother. 4 hours a day of this kind of work is the equivalent of 16 hours of work in any other profession. It can leave you drained and exhausted, yet the daughter never shirks or dodges what she has chosen to take on for herself.
At the end of her shift, sometimes the daughter has an opportunity to return home for a well deserved nap. In the door, keys and purse plopped upon the kitchen table, then drop into the recliner chair. In moments she is out. Drained but satisfied that her morning efforts were mostly a success. At other times, the demands upon her time from her aging father also require a visit to his home for assistance, housekeeping and bill paying. That longed for nap and maybe a rejuvinating snack must wait a little longer.
Her work with her mother and knowledge of caregiving practices, therapy and medications has earned her the respect and admiration of several professional CNA’s and nurses at the ACC facility. Some have remarked that she should take up caregiving as a career. Yet she has had no formal professional training nor certification in the field. All that she provides to her mother has come from jumping in and just doing what came to her intuitively and out of heartfelt compassion. Providing care and comfort for her mother is enough of a caregiving career for her.
The devoted and youngest daughter you have just learned of , I am proud to say, is my wife Penny who truly is her Mother’s Champion.
Jeff Dodson
December 26th 2010
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