grief

Alzheimer’s Strikes by Laura J. Little

/ Elizabeth Gaucher / 10 Comments

When I was in high school, my grandmother developed dementia.

Some people called it hardening of the arteries, some called it Alzheimer’s disease, and some called it senility. The name really did not matter; it was the devastating effects that were memorable.  We often remarked how merciful it was that Grandma did not know what was going on; it would have hurt her to know what was happening.  I was fourteen and was often asked to watch my grandmother for a short time so that my father could attend one of his many other responsibilities.

Alzheimer’s hurt our whole family, not just Grandma, and that was never more true than that one fall day when my grandmother slapped me.

I was not an abused child. When I was younger and Grandma was healthy, I would get an occasional swat across the bottom when I misbehaved or talked back. I got many more hugs, kisses, and thick slices of homemade bread with strawberry preserves than disciplinary smacks. I know that Grandma loved me. Grandma did not hit me.

Alzheimer’s did.

A chair belonging to the writer's grandmother

A chair belonging to the writer’s grandmother

It became obvious to my father that Grandma needed constant supervision. He hired a series of ladies to come and stay with her, but there were always gaps between when the “day lady” and the “night lady” came. Dad stopped by her house every day after work, but he had many other responsibilities, and someone needed to fill in for him when he had to be elsewhere. Often, I was the one who stayed an hour or so with Grandma so that Dad could bathe, eat dinner, or pay bills. I had one job: Make sure Grandma did not leave the house. How ironic it was that going home to her meant leaving the house that she and my grandfather built forty years before. Her mind was trapped in a much earlier time.The road that she traveled to get home was a rutted dirt road populated by horses and buggies and the occasional car that moved aside whenever the driver saw someone walking along the road. She did not recognize that it was seventy years later; by now the road was a major U.S. highway, well-traveled by cars and tractor-trailers that would not see her walking in the middle of the road until it was too late.

My usual strategy was to get her talking. I loved the stories she told about growing up. She talked about going to a now-demolished one-room schoolhouse, about her courting days, and about my Aunt Forrest, her lifelong best friend. She told of the horses they rode, the pigs they raised, and how the children hated Sundays because they had to dress up and go to church. They could not play the whole day long, but had to sit quietly and read. Sometimes they didn’t even read, they just had to sit. One day the quiet got to be too much for Grandma’s youngest sister, Edith,  so Edith mounted the brood sow, which of course headed promptly for a mud hole and dropped her off, ruining her Sunday-best clothes. My aunt got a well-deserved whipping, but Grandma laughed until the tears came. This is how we passed much of the time: Grandma insisting that she needed to go home, and me saying, “Oh, I’m having such a good time. Can’t you stay just a few more minutes?” On most days, she would agree and begin the next story. Using this kind of persuasion, I could usually keep her in the house until my father got there.

But one gloomy fall day, Grandma was more restless than usual. I was getting nervous, as she seemed so antsy, and dark was coming ever earlier; it was even more important to keep her off the road. She re-told a few stories, but every few minutes she insisted that she had to go home. By this time I knew that telling her that she was at home would do no good, so I asked her to stay a few minutes longer. She stood up and said,“No,I need to get home!” I jumped to try to get her to sit down, but she was too quick for me. As I held her arm, trying to keep her in the chair, she reached out and slapped my face with all her might. I was taller, but she had more than 80 years’ worth of hard work on the farm to build up her strength. There was nothing more I could do but call Dad to come and get her as she headed for the door. She was out the front door by the time he answered the call.

I had failed. This one simple task, keeping Grandma in her own house, and I had failed.

I hoped that Dad would get there before she got to the road. In the end, he did, but I cried that night. I cried for the hurt from the slap, but even more from the apparent victory of that hated disease. That night Alzheimer’s attacked me physically, yet I was powerless to strike back. The disease had hidden itself inside my wonderful grandmother, taking her body as a disguise. There was nothing I could attack; striking the disease that had beaten me would be striking my grandmother. If someone I thought I did not know tried to keep me against my will in a strange place when all I wanted to do was to go home, I would have fought, too. Since I could understand what her deteriorating mind must have reasoned, I could not be angry with her. I struck out at myself for failing.

That night I realized that my grandmother’s soul had died, to be replaced with this imposter.

That night I mourned my grandmother for the first time, but not for the last.

Laura Little holds a doctoral degree in Education and is the Director of Instructional Technology at Bridgemont Community and Technical College in Montgomery, West Virginia. She has over ten years of experience in higher education with public universities, private colleges, and the for-profit sector. She explores the common threads of these different settings on her blog, The Real Doctor Laura. This essay is the first to be a true Essays on Childhood submission covering adult reflections on a childhood marked by Alzheimer’s disease. Look for her poignant work in the Essays on Childhood project again in 2013.

Committed to Memory by Kathryn E. Brown

/ Elizabeth Gaucher / 4 Comments

“Your father is homeless.”

Katy Brown

There are certain announcements in our lives, both good and bad, that leave us speechless. I want you to be my wife.  It’s a boy! You’re hired. You’re fired. Not guilty. But none has stirred my life quite as much as being told by a hospital social worker that my father was, in essence, homeless.

Nursing homeless, that is.

For several years, I was the primary caregiver for my father, who suffered from vascular dementia and Alzheimer’s disease. After a series of strokes over 10 years, my father’s confusion made the simplest of tasks nearly impossible. When his condition deteriorated into the final stages of the disease, I was faced with the unthinkable. Not only could I no longer care for him in our home because of the extreme nature of his needs and behaviors, but there were very few skilled facilities willing to accept such a severe case.

Many nursing home admissions teams quickly rejected my father’s application without much consideration. Nursing home administrators and clinicians refused to accept a mentally ill patient who was combative, angry, incontinent, unable to speak or walk, paranoid, visually impaired and deemed “a threat to staff.” With red flags waving throughout his medical records, I was left wondering how other families handled similar situations. Surely I was not alone in this fight, and surely my father was not the only man in recent time to be afflicted with the worst of all possible byproducts of dementia.

There was no time to join a support group and there was no time for talking.  I had hours to find a solution. My father and I were equally alone. The illness had robbed him of the voices, faces and memories that were so much a part of his 78 years, while “the system” as it is referred to, had abandoned me.

Only one local skilled nursing facility accepted my father directly from the hospital where he had been attempting to recuperate from another stroke. Within the first week of his rehabilitation stay, he fell six times. Shortly thereafter, several members of the nursing staff reported in a care conference that my father needed help they could not provide, despite advertisements claiming that they specialized in disorders of dementia and Alzheimer’s disease. The proposed solution was to send my father to a mental hospital offering geriatric services geared toward finding medications that would curb the unwanted and inappropriate behaviors causing problems in their nursing home.

It was difficult to decide whether my father was being punished or helped. There was a nagging fear that if I did not agree to the mental hospital proposition, then he would be kicked out of the nursing home because I, the daughter, was difficult to work with.

After several frustrating telephone discussions, it became abundantly clear that as his guardian, I was no longer in control of his care.

Eight weeks in the mental hospital produced a domino effect of problems. The nursing home that suggested this route to make him a more socially acceptable resident of their facility discharged him and released his bed. Word had spread that he was not doing well medically, and that his condition had entered a terminal state. Given the nature of his condition, it was viewed as highly unlikely that he would recover from the infections and circulatory problems, which had left him bedfast.

I received a telephone call one morning from a social worker at the mental hospital. She was curt and steely with the delivery of one line that will forever be etched into my memory.

“Your father is homeless.”

The very sound of her words made me nauseated. In no way was my father homeless. I had cared for him nearly all of my adult life. I would never allow this to happen to him.

She went on to explain that my father’s situation was dire. Due to the stigma attached to the mental hospital’s reputation, few nursing homes will accept patients with mental therapy as part of their skilled treatment. It is much easier to return a patient to a nursing home in which they still have residency than to find a new one.

My best option, I was told, would be to look into Alzheimer’s disease care centers in Ohio, or to seek admission in an end-of-life home.

Multiple rejections followed with responses ranging from “we don’t accept mental patients” to “although he is terminal, he isn’t actively dying.”

Personal care homes wrote that he was unfit for assisted living because of his required need of total care. Though no one would make a commitment that he would be kept in a care home for an extended period, monthly expenses were estimated at $6,000, not including personal hygiene items and prescription drugs.

With one last facility to interview, I was preparing to find a way to care for my father in our home once again. I wasn’t sure how I was going to manage a home-health situation with two small children to shelter from the violence of his illness. I knew I couldn’t lift the six-foot-three- inch, 190-pound man, with stubborn strength that never seemed to weaken despite his body’s degeneration.

The nursing home admissions director listened to me as I poured out the history of his illness and recent care experiences. She gave me a tour of the facility and explained the process of applying for Medicaid, should all of my father’s resources be depleted during his long-term stay. When I asked her if this meant that the facility would accept him, she nodded and told me they would care for him, and that I was not alone. Only recently, her father had passed away from the disease, and she, too, had to succumb to placing him in a mental hospital. Our stories were nearly identical.

A little over a month later, my father died of pneumonia in the one nursing home that accepted him unconditionally. The level of care was beyond my expectations in his last days. Critical care nurses checked on him every 30 minutes. Nursing assistants repeatedly asked if I wanted something to eat or drink. They brought in comfortable chairs for my family. We were given a private room that resembled a hotel suite so that we wouldn’t be reminded of where we really were.

After he passed away, I was flooded with exhaustion. The last four months had felt like a never-ending nightmare. After the funeral, I began to go through a checklist of things I no longer had to face. I no longer had to worry about the expense of his nursing care or whether a facility could manage him. There were no more worries about spending down his assets and selling off all of his possessions before government assistance stepped in. There were no more fears that someone would be rough with him if he suddenly became combative. I was no longer afraid of experimental drug treatments that might or might not help his agitation. I wasn’t afraid to hear the telephone ring anymore. Above all else, I no longer feared where he would rest his head at night.

He was home.

Kathryn E. Brown is a regular contributor to the Charleston Daily Mail. A native of Charleston, West Virginia, she is the owner of The Write Word, LLC. Her life stories have captured a loyal following, and this year she published her first book. To find out more about Katy, visit www.thewritewordllc.com or her blog at www.katybrown.wordpress.com.