My daughter Deanna, a widow with no children, was quite independent. She was often driven by an undervalued unappreciated stroke of genius, apparent by her knowledge on a great many subjects, and an artistic talent which regularly caught us unawares. When it came to her next venture, characteristically, her modus operandi always kept us in suspense. Deanna was diagnosed in 2012 with frontotemporal dementia, (FTD). This diagnoss came years after her family, three brothers, sister, mom and stepdad frequently observed her baffling behavior.
Following a lengthy interval Deanna joined everyone on Thanksgiving Day 2011. It was a special time when we hosted our children and their families for the holiday. After dinner, most of us were sitting around the dining room table playing a family favorite dice game that was always fun because all ages could play as equals. During the game, Deanna was subdued, not adding up the numbers of what her throw of the dice revealed. I wondered if she was just being obstinate. My talking to her after in an effort to find if there was any problem lead nowhere. To me it was a worrisome situation that only allowed a wait and see approach.
Over time she became more isolated, obsessive, secretive, avoiding contact with family, only reaching out to me and her stepdad when all else failed. In spite of our parental efforts, it was her unpredictability that brought unease as well as confusion to her siblings. In the course of these rising concerns, Deanna’s behavior became the butt of shameful ridicule and torment.
September 2012, there was a get together at her sister’s home. I saw that Deanna was unable to finish her sentences, indicating that something was not right, but she said she was seeing a doctor. Her status as an independent, emancipated adult posed a problematic situation because we knew she was in trouble, but we were unsure how to help or what to do.
Everything came to a head when at 9:30 p.m.one evening we received a telephone call from a Social Worker from Regions Hospital who explained that an incident of bizarre behavior occurred outside Deanna’s Eagan home when authorities were called and she was brought to Regions Hospital. No substances were involved, but Deanna was definitely out of control. Once hearing what had happened, I clarified that since Deanna had been in the Air Force (six years), National Guard (two years) she sought healthcare through the Veterans Administration, (VA).
The next day she was transferred VA Hospital and hospitalized for two weeks. In that time her speech difficulty was diagnosed as Aphasia. A series of tests stressed she could not live alone. Without question she moved in with us. So it was that we, Deanna, Paul and I, would travel back and forth to the VA Medical Center for numerous tests to find answers. Each test was followed with Paul and me sitting with Deanna in consultation with a medical professional who explained each result. Little by little we began to comprehend the full extent of Deanna’s diagnosis of frontotemporal dementia, and her prognosis of increasing word finding and speech difficulties which progress to mutism. Those tests confirmed significant impairment in language and executive functioning and recommended that she be supervised at all times.
Though she did express her fear of dementia, her endurance was impressive letting go of her house and all personal possessions. Knowing the progressive nature of FTD was devastating. However, it did answer so many questions. To her credit, with resolve and humor Deanna faced all the implications of her debilitating illness. Over time, we three toured many, many facilities, and selected Fergus Falls Veterans Home where she was admitted in 2013. When admitted for skilled nursing care, her physical appearance was similar to any staff person.
Countless changes have taken place. Deanna now resides on the fifth floor Penthouse at the Minneapolis Veterans Home. She is unable to converse but does say a few words or gibberish. No longer can she feed herself or walk and spends her days in a reclining wheelchair. I visit my daughter three or more times a week, after the staff has prepared her for the day. Arriving about 7:30 a.m. Deanna greets me lighting up with a big smile sometimes even a laugh. Her dining room overlooks the Mississippi River, Lock and Dam #1 and Highland Park across the river. Sitting with her, I also visit with other residents and staff while beginning a solo conversation with Deanna about any happenings since last we saw each other, bringing her up to date about family, the weather, what books I may be reading — it’s as though I’m talking on the telephone. Verbally, there may be no response, however she but hears me. It is evident there are times she absorbs what is being said and what is going on around her. When breakfast arrives, I prepare her toast, egg, and slice her banana into the hot cereal which to sweetens it without sugar. Giving her sips of juice or milk, I continue feeding her a favorite a meal of the day. Once breakfast is finished, we wheel across the hall to the great room. Here large windows frame a western tree filled view camouflaging the airport beyond the trees. Deanna likes to doze after breakfast. Occasionally I’ll read to her, or try birdwatching, and we site airplanes taking off or coming in to land, which has become a big deal. So far we counted 43 airplanes in one sitting.
Sunday morning provides another aspect as we board the elevator down to first floor, wheeling to the Chapel of Peace to attend its non-denominational Eucharistic Service. At first glance, is a room filled with close to a hundred residents, and some family members, yet most visible is the range of people afflicted by debilitating ills, complications often painful that find them entirely dependent on a wide variety of walkers, up-right or reclining wheel chairs.
Worshiping with my daughter, to be close to her, praying, singing, listening, and to follow along with the celebrant together with those in our midst is right and good. To me, this worship service every Sunday morning is thought provoking on so many levels. It is a most humbling, spiritual experience, a reminder always that our lives are finite, and an awareness that none of us know how we’ll sail out of this life, but that each of us will.
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