“Your father is homeless.”
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.