While the National Institute of Health spends $3 billion a year on AIDS research, and nearly $4.9 billion on cancer, for Alzheimer’s it spends only $500 million, an enormous drop off for an illness that is already widespread and growing rapidly.
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The morning after my father took a mirror off the wall because he thought the man in the reflection was trying to attack him, my mother and I drove him to a hospital for review. It was about a seven-hour wait that day, behind a long line of other people with other troubles. During that time, my father, oblivious to why we were there, restlessly tried to get up and leave, continuously getting in the way of other patients passing on gurneys and pulling angrily away from me each time I asked him to come sit back down. Following a brief examination, a nurse suggested we check my father in for further review. We did not know as we left that night that it would be more than six months before he came home again, or that he would never be the same.
I have written before about the complications of my father’s Alzheimer’s, but now that he has passed, after six years of slow digression, all I can think about are the other ways it could have gone. We were lucky that my mom was willing and able to care for him so that he could spend his last years at home, but at various points along the way, due to the classification and handling of Alzheimer’s in this country, it looked like a very different range of fates awaited him and my family.
Shortly after my father’s initial diagnosis, he was admitted to Wesley Woods, a local—and supposedly reputable—hospital for adult and geriatric care in Atlanta. We realized very quickly that things were changing faster than they should. Most days when we visited him he would be propped in a wheelchair, sometimes blocked off in such a way he couldn’t move the chair, and on so much medication he was drooling, hallucinating. This, of course, did not seem right, and yet the doctor we were told to ask about the medication he was receiving magically never seemed to be on site. My mother said she once saw him leaving through a back door after she’d waited several hours for him to come and talk to her.
When we finally did manage to corner him for a conversation, I’ve never wanted to punch someone in the face so badly. The doctor—who was the head of his department—sat behind a counter staring into his computer smacking gum with his mouth open, not even making eye contact with my mother while she asked what medication Dad was on, what we should expect to be able to do for him, etc. The doctor kept kind of rolling his eyes. As he peeled the gum out of his mouth and leaned back in his chair to toss it into the trashcan behind him, he said, “Your husband is basically a zombie. You will not be taking him home. The medication is required. You have no choice. This is what life is now, for you.” I had never—and have not since—felt such an electric urge to beat the shit out of someone. I took my mother’s hand as she broke into tears and led her out the door. A few days later, we had my father transferred to a new facility, which would become the source of a whole other world of problems.
In our experience with nursing homes we often found that the goal seemed to be to turn patients into zombies. My father was an active person, and remained so even surrounded by other people who were incapacitated by their diseases, so this approach often resulted in their medicating him to the point where he no longer wanted to move. Later, thanks to his newly catatonic state, other facilities would deem him too unwieldy to admit to their programs. The admission boards of these places, despite their massive costs, are often rigorous, and the process often felt more like trying to secure an apartment at the Dakota than trying to get my father medical care. And though many of the nurses who helped him during his stay at various locations treated him with compassion and respect, the memory of the awful doctor, and the coldness that he and others like him delivered their prediction of my dad’s fate, colored the whole world a sickly shade. It seemed at many points that we were being told to simply give up.
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While trying to figure out what exactly we could do besides leave Dad in a rest home, we were advised to meet with an attorney to figure out the specifics of our oncoming financial burden. My father would be impossible to keep at home, they told us, due to his disassociation, need for constant observation, upkeep, and so on. The cost for an average rest home facility capable of caring for someone with Alzheimer’s in our area was estimated at $7,000 a month, not including medication, which would end up being more than another $1,000 monthly, at least.
Although Medicaid would assist with certain short-term expenses, long-term care had to be settled out-of-pocket, at least until we had been rendered poor enough to be unable to pay for it. An attorney, who required a $6,000 retainer before giving any advice, drew up graphs explaining how my parents’ savings, the money my 67-year-old mother had planned to live on for the rest of her life, would be rapidly whittled down until it hit what the government considered an allowance low enough for them to take over. The process might include, he said, selling my mother’s house, as this was factored into their savings. The attorney did design a system through which money could be funneled to protect it from the government over time, but the logic of how much or in what way this would occur was so complicated that my mom struggled to hold back her tears as she wrote all the facts down.
“Your husband caught the wrong disease,” the attorney told us, shortly before we left. “If he had cancer, this would all be paid for. But he has Alzheimer’s.” There are a lot of illnesses you can catch in this life, but few that are as misunderstood, or that threaten to spread like wildfire not only through the sick, but the daily lives of those surrounding them.
Caregivers for Alzheimer’s patients, in trying to help their loved ones, experience a range of symptoms that are like an existential plague themselves: exhaustion, depression, insomnia, mind-boggling stress… all while in the midst of the long process of watching someone they knew their whole lives disappear gradually before their eyes. Google “Alzheimer’s caregiver support” if you want to delve into a world as emotionally complicated and terrifying as any sort of physical ailment you can imagine.
For many months, my mom went against the attorney’s advice and paid the bills out of pocket, for a nice, if still depressing, elderly rest home not far from her house. Extra costs in addition to the base fee could be added if my father was a handful, which he often was, being more active than other residents. I learned the terms “catastrophic coverage” and “the doughnut hole” in regards to Dad’s insurance, which did help pay for the endless list of medications, up to a point. We were lucky that my dad had worked hard so that my mom could afford his care at this stage. It was certainly a privilege many other families would not have been able to consider, and therefore would have been forced to put their loved one into a home approved by the state. And although it would last for a time, my mother’s savings did have an endpoint, one that would arrive swiftly if we were to keep doing the same thing.
It felt horrible to think of money when I knew my dad was dying, but money in some ways dictates reality. The only choice seemed to be to pay the bills for as long as we could, and in the meantime try to do whatever made Dad the most comfortable, without putting him in any danger. In the end, that meant bringing him home, to be cared for by my mother, myself, and my sister and brother-in-law, over what turned out to be several years. The process very nearly killed my mother, putting her through such a reign of stress and sleeplessness I don’t know how she went on from day to day. Had it not been for the Hospice caregivers who helped her through the final months, when Dad could no longer walk, I don’t know how she would have made it even with the rest of our family’s help. I know she did it for love, and, again, was lucky to have the will and ability to do so, even if at times it seemed like there was no end.
Alzheimer’s is a terrifying disease. You are physically healthy, but you can’t remember who you are. Day by day, your surroundings become more and more alien, buried. You develop a child’s brain, and are trapped in a body you no longer know how to care for. It is a slow and indescribable death, one that ends most often from falling down and hitting your head, or from choking on your spit because you can’t remember how to swallow. You can’t tell anyone what hurts or what you feel, because you don’t know.
According to the Alzheimer’s Association, more than 5 million Americans are currently living with the disease. One in three seniors dies with Alzheimer’s or another form of dementia, and in 2013, 15.5 million caregivers provided an estimated 17.7 billion hours of unpaid care valued at more than $220 billion. The fact that many caregivers end up requiring care themselves, and that spouses of the afflicted are up to 600 percent more likely to themselves develop dementia, should be a screaming alert sign that the way we handle Alzheimer’s support in this country is deeply flawed.
While the National Institute of Health spends $3 billion a year on AIDS research, and nearly $4.9 billion on cancer, for Alzheimer’s it spends only $500 million a year, an enormous drop-off for an illness as widespread and rapidly growing as it is.
Part of this is likely due to the fact that we mostly have no idea what Alzheimer’s is, much less what causes it or how it works, and as a result it ends up getting pushed under the rug. And yet none of those things should serve as a reason to leave people who have been affected by it on their own, free of support or hope in a world about as confusing and expensive as could be imagined. The only way out is to shed light, to provide care and assistance, and to educate, as with other illnesses. Many have fought hard for reform to Alzheimer’s assistance, treatment, and most importantly, research toward a cure, yet it remains a boutique affliction, one whose only relief will continue to be death, until something is done in the name of progress.
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