Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  When she moved to Woodside, Mom got a new primary care doctor, one of the two doctors who visit the facility. I know now that she could have kept Dr. Claiborne as her doctor (if Dr. Claiborne accepts Medicaid patients). At the time of the move I was thinking only about how much easier it would be for Mom to see a doctor without having to leave the nursing home. Fortunately, her new doctor seems friendly and conscientious. When she’s in the hospital for the dehydration, he swings by on rounds and introduces himself to me. Remarking on her smile, he says, “That’s not a bad way to be.” I tell him that I agree.

  I learn later from the nurses that the doctor has taken Mom off of the depression medication she’s been on for years. As her health care proxy, I wonder why no one consulted me. The next time I see the doctor, I question him, and he says, “She seems fine without it.” Again, he’s right; it’s hard to distinguish depression from late-stage Alzheimer’s. But I sense that, at this point, Mom’s medical decisions may be at least partially out of my hands. The nursing home is accountable to Medicaid, not to Mom, or me. I vow, nevertheless, to insist at the next care plan meeting that I be kept informed.

  By late 2011, I think of my mother’s future and I despair. I imagine my Sunday afternoon visits with Mom in Stage Seven continuing on and on for years, each visit the same as the last. When Sunday rolls around, I would often prefer to stay home with my family. How long will this final stage last? When will she lose that fabulous smile, then the ability to sit without support, hold up her head, chew and swallow? How long will it be before she lies in bed, curled up in a fetal position, rigid, and unseeing? Will she pass away this year, or five years from now?

  Despite the moments she enjoys each day, I wonder if my mother has reached the point where she’d prefer to die. I search her eyes for some sign that she’s had enough, but all I see are sparks of pleasure and recognition amid sleepiness, bewilderment, and occasional annoyance. If she could speak more than single words, would she say “I love you, but it’s time to go”?

  I can do nothing but keep watch over her. If she ever needs to go to the E.R., I will make sure that she receives no heroic treatment or invasive procedures. I can help her die in her nursing home bed with hospice care. I hope that Mom will die in her sleep (which, unfortunately, is highly unlikely, statistically), or that she will pass fairly quickly from a massive stroke or pneumonia.

  Before each visit, I cringe at the thought of her in this holding pattern—not getting worse, but so far away from how she once was. I despair, that is, until I arrive and sit next to her.

  In October I bring her a sweet treat as always, this time a piece of raspberry cheesecake. (Despite what I now know about sugar, insulin resistance, and Alzheimer’s, I can’t bring myself to cut her off from sugar; any damage it might have done to her neurons is beyond repair, and her immediate pleasure remains most important to me.) I bring the dog, too, and wheel Mom to the family room where the two of us sit and hold hands while Shadow sniffs the floor. I rattle on about what Andrew and Morgan have been up to.

  “I’m talking a lot, aren’t I, Mom? I’m talking on and on and on. Do you mind that I’m talking so much?” She shakes her head an inch from side to side.

  “Remember years ago when you used to talk so much I said it hurt my head?” I smile and look into her eyes; her eyes never leave mine and she gives me a slight nod.

  “I’m sorry I hurt your feelings back then. You know, sometimes I wish that we were still sitting at my kitchen table like we did when you lived with me. Sometimes I wish you could talk like that again.” I pause and squeeze her hand. “But it’s all right, isn’t it, Mom? I can still talk with you and I can still understand you even if you have trouble getting the words out. Right?”

  She smiles and nods her head almost imperceptibly.

  “You might not be able to say much, but I know you’re in there. You’re right here, aren’t you, Mom?” I lean my face closer to hers and she gives me a big smile.

  “I love you,” I say. I laugh a little and say, “I guess I show my love for you by giving you cheesecake.” She tips her chin up and puffs a laugh through her nose that sounds like a tiny set of bellows.

  Then I sit back and let silence descend.

  After a few moments I say, “You used to make the best birthday cake for me.” Her brow crinkles and she shakes her head just the tiniest bit.

  “It was angel food cake with pink frosting—fluffy frosting that tasted like marshmallow.” Her brow relaxes and her eyes light up.

  “I made the same kind of cake for you for your birthday last year.” Her eyebrows fly up and her eyes widen.

  “Yes, we had the party right here in this room. Bill and Susan came, and a bunch of other people. It was a really nice party. But my cake wasn’t as good as yours. The sugar in the frosting came out crunchy. But it tasted good.” She smiles.

  I always see a reaction if I look closely enough. If she tries to say more than “yes” or “no,” I try to repeat what I’ve heard her say. If it doesn’t make much sense and sounds funny, we both laugh.

  When I lean down over Mom’s wheelchair to say good-bye, I place my arm around her shoulder, my other hand in hers. Her blue eyes are locked on mine, dancing.

  I want to tell her how much I love her and appreciate her, but I don’t know what words to use. I say, “You’re very special, Mom.”

  Immediately she leans in closer and says “Spe-cial!” Her voice is so crisp, the syllables so clear, I catch my breath. She grins at me as if we’re sharing a secret joke.

  “Yes, you’re very special, Mom. I love you.” I wrap her delicate shoulders in a hug, in the softness of my body, and she rests her cheek against mine.

  Afterword

  As I look back over these seven years, I think of the saying “you know what you know when you know it.” Like all caregivers, I did the best I could with the information and support I could find, but I know now that I would do a number of things differently if I had to do it all again.

  For one, I was much too trusting of Mom’s small town doctor and then her new primary doctor in our city. When Mom lived at the cottage, as soon as she started hoarding and not cleaning and cooking, I wish I had paid more attention and hired a geriatric care manager to visit her. A geriatric care manager could have assessed her ability to care for herself and to drive, and offered us suggestions for the next steps to take. Surely I would not have been able to deny my mother’s dementia as long as I did.

  I would have found a top-notch neurologist who specializes in dementia and tried to convince my mother to have another neuropsychological exam such as the one she had in 1997. I’d make sure that Mom was tested for conditions that mimic Alzheimer’s disease but are reversible, such as vitamin deficiencies and depression. For the neuropsychological assessment, I’d ask the geriatric care manager to help us accurately answer the medical questions. Indeed, I’d follow the advice of Nataly Rubinstein, a geriatric care manager and author of the book Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide, and have the geriatric care manager walk us through each step of the process of receiving an accurate diagnosis.

  I would not have believed Mom’s primary care doctor when she told me that the available Alzheimer’s medications did no good. I would have done my own research, and convinced the neurologist to at least try these medications to slow the progression of my mother’s symptoms. The longer Mom could dress herself, use the bathroom, and feed herself, for example, the longer she could have stayed out of a nursing home.

  I would not have rushed into moving Mom into my house. I may have paid for aides to help my mother at the cottage, or convinced my mother to move directly to assisted living, or questioned why I felt confident caring for Mom in my own home, given our history. Though I received credible advice from other caregivers in my support group, my city’s Family and Children’s Services caregiver counselors, a social worker, an elder care psychologist, and various staff members at her facilities, n
one of the advice I patched together could have equaled in breadth and depth what I would have learned from an experienced geriatric care manager familiar with all aspects of my mother’s life.

  On the financial side, I would have paid for the initial geriatric care assessments myself when Mom lived at the cottage. Then, when I handled her finances, I would have swallowed my fear of depleting her savings; the cost of hiring a geriatric care manager would no doubt have saved us some of the money we paid for her facilities—and the cost to our sanity and well-being.

  In this alternative universe, if my mother did move into a traditional assisted living facility such as Greenway, I would have asked about the type of dementia education provided to the staff on a regular basis, and I would have asked for clear guidelines about when my mother would need to move (if she became incontinent, for example). At Greenway I would have followed my mother’s care more closely, visited her more often, and insisted on being included in her care plan meetings on a regular basis. Again, with the help of a geriatric care manager, I would have recognized perhaps a year earlier than I did that Mom needed a higher level of assistance and stimulation than Greenway could provide, that she needed a dedicated “memory care” home such as Elm Haven. When Mom needed rehab, a geriatric care manager could have helped me navigate the rocky transitions from facility to facility.

  In 2005, when my mother and I visited an elder care attorney to transfer the cottage to me and fill out her Health Care Proxy, Living Will, and Durable Power of Attorney, I would not have trusted the attorney to understand everything about planning for elder care. I would have met with a financial advisor. Even though I was not planning on selling the cottage at that point, I would have talked to an expert about what to do with the money if we did sell it (such as not depositing it into my mother’s checking account). And then before—not after—I submitted Mom’s voluminous Medicaid application to Social Services, I would have reviewed it with both the attorney and the financial advisor.

  But this is the real world, not one inhabited by Super Daughters and Mega Caregivers, and I am left with my imperfect self and my very human regrets. By sharing my story I hope to make your journey a bit easier. Each of us brings our own personality, history, and values to caregiving, but common challenges remain. I’m hopeful that our new National Plan to Address Alzheimer’s Disease (see Appendix J) will help by increasing public understanding of Alzheimer’s and the need for specialized care, and that funding and answers will surface as more and more Americans fall prey to dementia.

  In the summer of 2012, my mother continues to sit up in her wheelchair, smiling. Her health remains fairly stable and she eats well. Today though, as happens a few times per month, she suffers a seizure. I find her curled up in bed, staring into space, unresponsive. No one knows what causes them, though I’m told they’re not unusual in people with advanced dementia. To me she seems so tiny and “gone,” so much like the images I’ve seen of people in the last stage of Alzheimer’s disease, that all I can do is stroke her hand and cry.

  But by the end of our visit, Mom is sitting up, bright-eyed and smiling, drinking me in. She enjoys three pieces of chocolate, and smells the roses I brought. With the spell broken, we return to the present.

  And so it goes. Each day brings loss; each day, recovery. A long journey, one day at a time.

  Appendices

  Appendix A:

  Is There a Test to Diagnose Alzheimer’s Disease?

  No test exists, as of this writing, that will confirm a diagnosis of Alzheimer’s disease. Clinical trials looking at body fluids and imaging results show promise, but because they are still being evaluated and standardized, these tests are not yet available to primary care doctors.

  However, doctors can diagnose “probable Alzheimer’s disease” with 90% accuracy with neuropsychological testing and by ruling out other causes of memory problems and cognitive decline. A medical history can rule out depression; lab work can rule out urinary infection, thyroid dysfunction, and vitamin deficiencies; and a CT scan and MRI can rule out strokes, trauma and tumors.

  PET Scans

  According to Dr. Frank Longo, a Stanford University neuroscientist, two kinds of PET scans can be used to find evidence of probable Alzheimer’s disease in the brain, although each is imperfect. The first can show decreased levels of metabolic activity, but it’s not accurate enough to use for diagnosis. The second is an amyloid PET scan, in which an intravenous injection of florbetapir, a radioactive drug approved by the Food and Drug Administration in April 2012, binds to amyloid plaques. Amyloid PET scans show plaques on 96% of people with severe Alzheimer’s disease and two-thirds of those with mild cognitive impairment. Longo says this tool may be available to primary care doctors by the summer of 2012, but it’s unlikely to be covered by Medicare at first. And he cautions that one-third of people aged 65 and over exhibiting normal cognition also show amyloid plaques on these PET scans—and they may never develop Alzheimer’s disease. The Alzheimer’s Association reserves judgment on this new tool, since “a positive scan...has limited utility at this point. Having amyloid buildup in your brain does not mean for certain that you have Alzheimer’s disease.” They recommend further research into the use of such PET imaging.

  Spinal Fluid Tests

  A spinal fluid test has been approved for use that identifies the presence of certain markers of Alzheimer’s disease—the proteins beta amyloid and tau—but it cannot accurately predict who will develop Alzheimer’s disease. Research on this spinal test showed that among the test subjects with Alzheimer’s disease, a huge percentage—ninety percent—had high levels of these proteins in their spinal fluid, but among those with mild cognitive impairment, only seventy-two percent had the markers. However, thirty-six percent of those with no symptoms of dementia still had the markers. If we want to test people before they develop symptoms of the disease, or to catch the disease early, the spinal fluid test is not accurate enough to be definitive. Many doctors and researchers are reluctant to recommend this test as it cannot confirm a diagnosis, and no treatments exist.

  Biomarkers

  In May of 2011, an international workgroup of more than forty top Alzheimer’s researchers, organized by the Alzheimer’s Association and the National Institute on Aging (NIA) of the National Institutes of Health, published new criteria and guidelines for the diagnosis of Alzheimer’s disease—the first time the criteria and guidelines had been updated in 27 years. To make such a diagnosis, they argue, it’s not enough to rely simply on observing a person’s behavior or to conduct a neuropsychological exam. Alzheimer’s research must find specific biochemical substances in the body that mark the presence or absence of the disease or that reveal the risk of developing the disease (“biomarkers”). Research must prove the value of those biomarkers, and it must assure the medical community that all diagnostic tests using those biomarkers will offer reliable results and remain consistent from one laboratory to another. That’s a tall order, and the committee acknowledges that it may take ten years or more for scientists to identify the correct biomarkers.

  For now, the workgroup calls for intensive research on two types of biomarkers: the level of beta-amyloid in the brain, and damage or degeneration of nerve cells. Beta amyloid blocks the transmission of nerve impulses, and many researchers now agree that smaller beta amyloid particles, if not the larger plaques themselves, play a major role in the development of Alzheimer’s disease.

  These smaller bits of amyloid beta build up in the brain years before plaques are formed or a patient receives a diagnosis of Alzheimer’s disease, and slowly kill the brain. Tests on mice show that the substance that eventually turns into amyloid plaques—amyloid precursor protein, or APP—causes the death of olfactory nerve cells, which are closely related to brain cells. (Loss of the sense of smell is one symptom of Alzheimer’s disease.) This degeneration starts not on the outside of the cells with larger plaques, as previously assumed, but inside the cells with this smaller amyloid substance.
Dr. Jack Diamond, the scientific director at the Alzheimer Society of Canada, says that “by the time the plaques are formed, all the damage to the nerve cells has been done. A successful treatment would have to affect the amyloid molecules, not the plaques themselves.”

  • • •

  Re-defining the Stages of Alzheimer’s Disease

  The international workgroup mentioned above also recommends that the stages of Alzheimer’s be revised to include the many years—perhaps decades—before any symptoms occur. They call this lengthy stage “preclinical Alzheimer’s disease.” When I read this, I find it frightening to think that Alzheimer’s could be stalking my own brain right this moment, while I am in my forties. Researchers and doctors cannot say for sure what is normal aging and what is preclinical Alzheimer’s disease. I already know that I am high-risk, with a mother who has dementia and shows so many symptoms of Alzheimer’s. The international workgroup calls for more research into the biomarkers of this first stage, to help us recognize, diagnose, and treat it before any decline occurs.

  I hope that in ten years the pages I’m writing here on Alzheimer’s research will be obsolete, that we will know how to prevent, treat, and cure Alzheimer’s disease and other dementias. For the moment, though, I continue to discover in my reading more promising—if sometimes conflicting—trends in Alzheimer’s research. As Diamond points out, “We’re now at a crossroads....Some of the things that we always assumed are now no longer acceptable as fully explaining the disease.”

  Appendix B

  Medications Approved to Relieve Symptoms of Alzheimer’s Disease

  Two types of prescription medications have been approved by the FDA to treat the symptoms of Alzheimer’s disease. They are not a cure, and while they may lessen the symptoms of the disease, they will not slow its progression.