We Can Cure Alzheimer’s Disease

Alzheimers

Since November is National Alzheimer’s Disease Awareness and Family Caregivers Month, I thought I would take the opportunity to thank the more than fifteen million Alzheimer’s and dementia caregivers in the United States for their hard work. You are to be admired, and applauded.

More than forty million people worldwide have Alzheimer’s disease. Included in that number is my father, and perhaps your own parent, grandparent, spouse, or best friend. Because I often feel helpless when I visit my father in the nursing home as I listen to him stutter my name, and watch his hand shake as he tries to lift a scoopful of ice cream to his mouth or turn the page of the newspaper, I must reach out to you. I reach out with the ice-cold truth about this insidious disease that pisses me the fuck off, and makes me want to punch the protein out of its plaques and tangles. (I’m not a violent person at all, really. But watching a loved one slowly fade into the dark more than sucks.)

Now that I’ve purged from my gut how I really feel, I’d like to share with you what Dr. Samuel Cohen, a Research Fellow at the Centre for Misfolding Diseases in the Department of Chemistry at the University of Cambridge, has to say in a video about Alzheimer’s:

By 2050, Alzheimer’s will affect one hundred fifty million people.

If you plan to live into your golden years, your chance of developing Alzheimer’s will approach one in two.

Alzheimer’s is the most expensive disease in the United States, costing two hundred billion dollars each year.

Out of the top ten causes of death worldwide, Alzheimer’s is the only one that cannot be prevented, cured, or slowed down.

The US government spends ten times more on cancer research than on Alzheimer’s.

People with Alzheimer’s can’t always speak out for themselves.

Alzheimer’s is always fatal.

Alzheimer’s is not a normal part of the aging process.

If you have a brain, you are at risk for Alzheimer’s.

We now know that the plaques and tangles clogging the Alzheimer’s brain consist of protein molecules.

We can cure Alzheimer’s.

To hear Dr. Cohen’s TED Talk about Alzheimer’s and the new class of drugs being tested to stop the disease, please click here.

 

 

 

 

 

 

 

 

 

 

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Taking The Car Keys Away From My Father

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I’m over-the-moon excited to announce that my essay, “Reaching for the Keys,” has been published in Saranac Review  It’s about my emotional struggle to take the car keys away from my father, who was diagnosed with Alzheimer’s disease in 2012. I spent a year and a half working on it – typing, deleting, reflecting, pacing, tearing up drafts and starting over, pulling my hair out, waking up in the night to scratch down notes. Why all the fretting? Though any piece of creative work takes time to craft into a piece of salient art, writing this essay challenged me more than most other essays I have written. How so? While I know I made the right choice by taking the keys away from my father, the act of writing the essay brought me uncomfortably close to particular emotions and a long list of complexities that speak to the human condition (at it’s core, what this essay is really about): fear, anger, remorse, guilt, truth, loyalty, mortality, illness, aging, independence. I suppose that’s partly what creative writing should do – push us a little too close to the edge of the metaphorical embankment.

There’s also an ironic element to the piece, but I don’t want to give too much away here (apologies for the teaser). To quench your curiosity, relieve your hunger, I encourage you to read the essay. The Journal is available for purchase at: Saranac Review.

The Saranac Review was born in 2004 out of four writers’ vision to open a space for the celebration of many voices including those from Canada. Attempting to act as a source of connection, the journal publishes the work of emerging and established writers from both countries. As our mission states, “The Saranac Review is committed to dissolving boundaries of all kinds, seeking to publish a diverse array of emerging and established writers from Canada and the United States. The Saranac Review aims to be a textual clearing in which a space is opened for cross-pollination between American and Canadian writers. In that way, we aim to be a textual river reflecting diverse voices, a literal “cluster of stars,” an illumination of the Iroquois roots of our namesake, the word, Saranac. We believe in a vision of shared governance, of connection, and in the power of art.

Saranac Review

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I Have Nothing to Write About

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When people learn that I am a writer, they say, “I could never write, I have nothing to write about.” But that’s not true. Stories and narratives are everywhere, even in the narrowest cracks and folds of one’s life. If you can listen, you can write.

When I worked as a wellness nurse, I visited with more than a dozen residents, eighty or older, at independent living facilities. After checking their vital signs, I asked them if there had been any changes in their medications and health I should know about. Mostly, I listened to them share stories about their grandchildren and great grandchildren. Of course, I also listened to their woes. On my pad, I scribbled phrases such as “I wish God would take me already” or “Oh my achin’ legs. I got no legs anymore.” Those captured words were as essential to my work as the blood pressure cuff and stethoscope I used to check the residents’ vital signs, because behind those woes were hidden gems. For example, I remember the day eighty-seven-year-old *Sharon said, “The leaves are quiet.” Sadness oozed its way into my limbs, turning them limp, for what I heard Sharon saying was, “I long for my younger years.” I heard that longing when the lilt in her voice fell on the word “quiet.”

Virginia Woolf said, “Behind the cotton wool is a hidden pattern; that we—I mean that all human beings—are connected with this; that the whole world is a work of art.” In other words, the stories the residents shared made up the hidden pattern behind Woolf’s “cotton wool.” Their stories were an integral part of my writing, thus my own work of art. Their words were an art in and of themselves; they were metaphors for, say, loneliness, hope, fear, all the stuff that comes with aging, and dying.

Let’s take a look at ninety-six-year-old *Martha. During one of my visits with her, she told me she had written her own obituary.“I want to make sure I have as much set before I go so my family isn’t burdened with too much. Would you like to read it?” She pushed it across the table toward me. I couldn’t say no.

I don’t recall the details of what she wrote, other than her list of achievements: a college graduate, a teacher and volunteer, and an active member of her church. Martha told me she knew her time would end soon, that she was ready and had no complaints about the life she had lived. Understandably, talk of death isn’t easy; most people avoid it as if it were a highly contagious virus. But I made a point to listen to her because she needed listening to. What I heard behind the “cotton wool” of Martha’s words was a woman who not only pined to share her acceptance of death, but her anxieties, fears, and curiosities about death itself.

If we allow ourselves to hear the real story behind the “cotton wool,” surely we can weave a tapestry together.

I’ll end this post with a writing exercise for you (not mandatory, but highly recommended). While in a café or restaurant, or in any public venue, listen closely to the conversations taking place nearby. Note what is being said. Think about it for a while and see what kind of tapestry you come up with.

Good luck!

 

 

 *To protect privacy, all names are false.

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Choosing an Elder Care Agency

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Are you in need of an elder care agency for a loved one, but don’t know what you should be looking for? I’m here to help you get started.

A few years ago, when my father began to experience cognitive decline and difficulty with organizational and household tasks, he was diagnosed with Alzheimer’s disease. He became anxious when left alone, even for a short amount of time, so my family decided to hire a home health aide.

The agency we chose didn’t charge too much for caregivers, and they could take him out to lunch or to do errands. But personalities between my father and the few caregivers on staff didn’t mesh, so we hired a different agency about a month later. These caregivers lasted six weeks before they burned-out. After a lot of research, we found a larger agency with several caregivers and years of experience caring for people with Alzheimer’s. Because of reasons too complicated to discuss here, it took more than a year before the agency found a few caregivers that my father felt he could trust. And, in the event of illness, there was a large pool of others to fill in. The agency assigned a nurse case manager to oversee the caregivers, to trouble-shoot glitches in schedules, and to coordinate medical appointments. More than two years later, due to policy changes and poor communication from management regarding updates about my father’s condition, we fired them and hired another agency. That was about a month ago and, so far, things are working out well (I’m keeping my fingers crossed).

If you’re in search of an elder care agency, I’ve gathered a list of questions to ask whoever is in charge. But, first, it’s worth noting that private home care agencies are for-profit businesses; they’ll work hard to convince you that they’re the best ones to oversee the care of your loved one. So, before signing your name to a contract of any kind, think of the following as an interview – you do the interviewing:

1)  “Does your agency accept Medicare?”

If the services being provided are for activities of daily living – bathing, dressing, feeding – Medicare will not pay. They will only pay if skilled services like dressing changes or physical therapy are needed. Most likely you, or whoever is receiving care, will either have to pay out of pocket or use long-term care insurance, if you are fortunate enough to have a policy (see #2).

2)  Is your agency registered with the state?

Long before he was diagnosed with Alzheimer’s, my father  bought long-term care insurance, in the event he would need care for an indeterminate amount of time. His policy doesn’t cover the cost of care with agencies not registered in the state in which he lives. I didn’t know this until after we hired the second agency, which was not registered. But Long-term care polices can be costly. I recently learned that most companies no longer offer insurance because they don’t have enough funds to pay benefits; however I heard that New York Life still does.

3)  Does your agency meet federal requirements for safety and health?

4)  How long has your agency been in business and do you have experience caring for people with Alzheimer’s, etc.? What are the primary services your agency provides?

5)  How experienced are your caregivers? Can I see references?

6)  How often do you conduct performance reviews? How are your home health trained, and how do you monitor their skills? Are they licensed? How do they handle emergencies like choking or a heart attack? Are they trained in CPR?

7)  Are caregivers able to drive clients to appointments, to lunch, etc.?

8)  Is there a lot of employee turnover? If so, why?

9)  Are you affiliated with local hospitals? If so, which ones?

10) Do you have case-managers? How often do they visit clients? Will they go to medical appointments? Are they available for emergencies? What are the fees for these services?

Depending on the agency, the fees can range between $125 and $165 per hour. Though it’s expensive, if your family can afford it, it’s worth it.  Case managers help coordinate all aspects of care, including assigning caregivers, and following-up with physicians. And they advocate for their clients.

11) What are the fees for caregiver hours?

12)  How often do you bill? Do you bill directly to long-term care insurance companies, or do clients have to pay upfront?

13)  How do you communicate with family? By email and/or phone. How often? Who are you allowed to speak with? All family members, or just a designated individual like a health care proxy or legal guardian?

If you’re the one designated to speak to the case manager and other staff, I urge you to remind them to send you updates on a regular basis, otherwise they will forget. Remember, you are your loved one’s voice.

Feel free to offer feedback.

Good-luck!

 

 

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Bananas

bananas

During a visit with my father last October, I experienced a moment of mutual presence with him, a moment so rare between the two of us that I had to write about it, not only for me, but for you. Do you have a similar experience you are in need of sharing?

Bananas 

While I eat lunch with my father today, he stares at the bunch of bananas in front of him. “They’re so beautiful,” he says. “Their so yellow.” He smiles, then giggles. Who is this man?

Before my father’s dementia started progressing a few months ago, he never noticed the details of anything beyond his checkbook or savings account. We certainly never discussed the aesthetics of fruit. But maybe the plaques in his brain are leaking a chemical that allow my father to be deeply aware of seemingly mundane things like bananas.

He takes a bite of his sandwich, then comments on the bananas again: “I can’t believe how yellow they are.”

Until my father’s uncharacteristic awareness, I never looked closely at the beauty of bananas: cylindrical bodies, tapered ends, and sturdy stems attached to inflorescent stalks. When I eat a banana, I usually strip the peel off, whip it in the trash, and devour the fruit. I grab a banana on the go, when rushing to an appointment, or when driving to work. After I’m finished, I throw the peel on the passenger side floor mat, or stuff it into the cup holder.

My father touches the top banana, lightly, as if taking care not to disrupt its serene poise, yet needing to feel its yellow presence. I ask him if he wants one. He pulls his hand back. “No, I just like looking at them,” he says. And so we look at the bananas, together.

Bananas was previously posted at  Beautiful Things, a weekly column by River Teeth: A Journal of Nonfiction Narrative 

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Being Mortal by Atul Gawande

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Most of us avoid talking about death. The topic is not, well, the most pleasant one to address because, inevitably, it means a discussion about what happens before we breathe our last breath. Dying. That’s the part of the conversation where you say, “I hope I go in my sleep,” or “I hope it’s quick and painless.”

Since we can’t run away from dying or lock it up in a closet – sorry – I thought I’d share what Atul Gawande has to say about it in his latest book, Being Mortal. He takes an anxiety-producing topic and fearlessly broaches it through mind-boggling research and affecting stories. Though, I should warn you, the book is not emotionally easy to read. The stories come one after another: Alice’s frequent falls and car accident, Bella’s descent into blindness, Ruth’s stroke, Sarah’s lung cancer.

For much of history, death just happened. People literally dropped dead: you had a sore throat, and the next day you died. Our bodies didn’t “crumble” over time like they do now, thanks to advances in medical technology (28).  We have antibiotics, breathing machines, intravenous fluids, dialysis, chemotherapy. There is always one more drug, one more experimental therapy a physician can pull out of the medicine cabinet to keep you alive, even if it’s only for a few more weeks. Physicians, especially surgeons like Gawande, are trained to fix people. But, in doing so, are we causing more harm than good? Are we denying the aged, and terminally ill, sought after comfort?

But some people are willing to do anything – surgery, take pills – with the hope of maintaining independence, but, as Gawande says, “what do we do when it can no longer be sustained (23)?” Perhaps your parent has have lived on her own for the past fifty years, tending the garden, walking the dog, driving to the grocery store, and so on. But now, due to poor balance and a broken hip (FYI: about 350,00 Americans fall and break a hip every year), she can no longer engage in any of those activities. She can no longer safely cook her own meals or walk to the bathroom. She needs someone to be with her, 24/7. How do we keep the aging population safe while, at the same time, foster their independence? Who will be the one to care for our frail grandparents, parents, or spouses? These are just a few of the difficult questions that lack a single-dose answer.

Through interviews with patients, his dying father, other physicians, and proponents of institutional change, Gawande, and readers, learn that the “sustenance of the soul” is possible through imagination: community co-op living, mobile teams to check in on the elderly, and greenhouse living – long-term care facilities designed to look like a home (128). He debunks the myths of hospice – to do nothing and “let nature take its course (160).” If anything, hospice allows the aged and ill to live a bit longer in their own homes by fostering patient dignity and autonomy.

How all of this comes to fruition may not sound so simple, but Gawande guides us, with a cheat-sheet of questions to ask those who are dying:

1)   What do you understand about your illness, or prognosis?

2)   What are your fears? Goals?

3)   What do you care about?

4)   Given the circumstances, what trade-offs are you willing to make?

5)   If your health deteriorates, how would you like to spend your time, and whom do you want to make decisions for you?

Medicine is not only about repairing people’s hearts or fixing their broken bones.  It’s about maintaining an individual’s well being, emotionally and mentally. It’s about helping human beings live meaningfully by encouraging them to be the author’s of their own lives, up until the very last sentence.

Gawande, Atul. Being Mortal. New York: Metropolitan Books. 2014. Print.

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