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Dementia Has Turned My Family's World Upside Down, And I Don't Know How Much More I Can Take

My oldest sister, Abby, calls for the second time this morning. "Oh, Jannie!" she says, reverting to my baby-sister nickname. "It's so great to hear your voice, finally! Are you in Idaho now?"

"We sure are," I answer, in the same tone that I answered the same question earlier. It's been over a year since I relocated, not long after I helped Abby and her husband transition to assisted living. I can picture her perched on the loveseat in their tiny apartment, its walls vivid with her paintings, sun streaming in from windows that look out over California foothills. "How are you guys?" I ask.

"Oh, fine! We just got back from ... Where we eat." She means the dining room, but she falters. Then, brightening: "Are you in Idaho now?"

Our conversations circle like this now, their loops gradually shortening, spiralling cheerfully along the surface.

According to Alzheimer's Association, Abby is one of 6.5 million Americans living with the disease. When she was diagnosed, I was heartsick. One of the few consolations I clung to was that my other sister, Sal, and I could sustain each other through the long goodbye.

But it turns out that Alzheimer's is not the only type of dementia. Others include dementia with Lewy bodies, vascular dementia and Huntington's disease. There are other conditions that cause mental confusion or disorientation, sometimes temporarily, as can occur in older people who have urinary tract infections. With other afflictions, dementia is permanent and progressive. One such disorder is corticobasal degeneration. I discovered that when Sal, my next-oldest sister, was diagnosed.

Growing up, I was the baby of the family. Abby, 12 years my senior, was for me the embodiment of glamour. Sal, seven years older than me, was my mentor and de facto nanny. I dogged both my big sisters' steps as much as they'd let me, observing them with a mixture of envy and hero worship. I revelled in their attention when they would dress me up like a life-size doll, until I grew restless and they'd hiss at me to "hold still!" Other times, when they thought I was getting off too easily for whatever annoyance I'd caused, they'd take me out of Mom's earshot and scold me themselves. It worked: my sisters were my role models, and I craved their approval more than I did that of my parents or, later, even my friends.

I thought Abby could do anything. Sidestepping our domineering father, she put herself through college, becoming an artist and teacher. I was five when she left home, and our house felt semi-becalmed in her absence.

After Abby left, Sal did nearly as much to raise me as did my mother, who so often deflated in the face of my father's vehemence. It was Sal who taught me how to clean a bathroom, how to bake a cake, how to be a good friend, and how to drive her '67 Camaro the summer I turned 16 and she was home for a visit. Later, as the three of us were figuring out how to raise our sons — coming from a family of all girls, we were somewhat mystified as we produced only boys — it was Sal's house where we gathered for holidays and celebrations, for the memorials when our parents died.

Abby was in her mid-60s when her formidable mind showed signs of slipping. It took years, several fraught family meetings, and a long series of neurological assessments before Sal and I, along with the rest of Abby's loved ones, had to face the reality of her condition. Like many people, we'd been schooled to believe that Alzheimer's was something to be dreaded, a fate possibly worse than death.

As devastated as we both were about Abby, Sal was confronted with another life cataclysm when her 40-year marriage blew up. It turned out her steady, taciturn husband had been a serial philanderer for a dozen years. She emerged shaken and raw, as though whatever emotional insulation she'd had was wearing away, leaving her newly fragile.

Then one day I got a frantic call from the closest in Sal's large circle of friends. "Something's wrong," the friend said. "Come see for yourself."

I still lived in California at the time, 300 miles up the coast from where Sal lived. I drove down the next day. Sal greeted me at her front door, delighted to see me but startlingly thin. Her posture was hunched, her left arm contracted at an odd angle. A bruise, unsuccessfully disguised with makeup, spread across one side of her face.

"I had a little fall down the stairs," she explained with a nervous laugh. "It's not a big deal, nothing's broken." Her affect as well as her body seemed so frail that I kept my alarm to myself, but after our visit I conferred with her oldest son, who lived nearby. He too was concerned. He'd recently taken her out to her favourite steak place, where she'd had no idea that she'd rested her left arm in the middle of her entree until he pointed it out to her.

It took months for Sal to get appointments with a battery of neurologists, and even longer for the doctors to confer. Eventually, they agreed on a diagnosis. All the signs pointed to corticobasal degeneration, sometimes referred to as corticobasal syndrome.

I'd never heard of either. "Is that serious?" I asked Sal when she told me.

"It's not good," she answered. "But I'm going to make the best of it." Her voice trembled with mixed fear and resolve, already weaker than it had been a few months earlier. "I'll be OK," she said. My heart cracked, understanding for the first time that she wouldn't be.

"'Is that serious?' I asked Sal when she told me. 'It's not good,' she answered. 'But I'm going to make the best of it.' Her voice trembled with mixed fear and resolve, already weaker than it had been a few months earlier."

I didn't want to plague Sal with questions, so I pored over what little information I could find. What I learned is that the best to be said of corticobasal degeneration is that it is rare. It blights the brain's cortex and basal ganglia, causing loss of balance and muscle control, impaired speech, the eerie "alien limb syndrome" — which explained how Sal's arm wound up in her prime rib — and, as the literature blandly stated, "changes in thinking and personality." It is progressive, incurable, and, unlike Alzheimer's or Parkinson's, no medication exists that slows it down. Ultimately, it is fatal. I wanted to creep into a cave, a refuge where I could process this new upheaval.

But Abby, once she'd learned that Sal was ailing, had many questions — rather, the same questions over and over, with which she besieged Sal over the phone. As the suddenly most capable sister, it fell to me to deflect her well-meaning assaults.

"What's the name of what she's got? Let me write it down," Abby would ask every time we talked. Her refrigerator fluttered with Post-its, all of them with the name of Sal's malady as I'd dictated it, inscribed in Abby's graceful script.

Abby was as determined to fix Sal as she was unable. She obsessed over her scheme to move in with her now-disabled sister, leaving her husband — never able to countermand Abby's will — at home. Sal was aghast but had neither the energy nor the temperament to head Abby off.

Again, intervention fell to me. It demanded new skills, including therapeutic lying, as I invented reasons why the upcoming week wouldn't be a good time for Abby to go stay with Sal, week after week, month after month.

These days, so long as I don't bring up Sal and her illness when we visit, Abby seems happy. Her body is strong, she can draw and paint, and thanks to her devoted husband, she doesn't require the kind of memory care that is designed to both protect and restrict patients who are prone to wandering. She loves her new home, including the dining room where, as far as she's concerned, the menu changes with every meal. It's possible that Abby is more content now than she was when her brain was firing on all its cylinders.

Sal's decline, by comparison, is cruel. I've helped her son move her to upgraded care three times as she has diminished. Her current facility is the best available in her area, providing round-the-clock care. She can summon help with the push of a button on a lanyard around her neck. But she has so little control over her limbs now that sometimes she can't find the button, or she pushes the TV remote instead. She can no longer walk, stand or sit up unaided. She insists on feeding herself but it's difficult to watch; choking is always a danger. Her speech has further weakened, her words slurred and halting to the point where they're often indecipherable.

I travel to visit her, and within minutes of my arrival she makes plaintive requests, as poignant for their simplicity as they are unrealistic.

"Can you bring me my sewing machine? What if we hop in your car and go to lunch?" she asks, her blue eyes wide with hope. The disease's assault on her brain leaves her unable to register the scope of her disability or relinquish her identity as someone who can operate a sewing machine or hop in a car. It's a symptom that causes more distress — for her, for her caregivers, for her loved ones — than her physical limitations.

I manage to change the subject every time, and we laugh together over the stories she recounts from our childhood. But soon she tires, her eyes unfocused and half-shut, her words devolving into incoherent mumbling. Still, she continues talking on and on. Ashamed of my limited patience, I find an excuse to leave, assuring her I'll return soon.

I don't talk much about this. Chronic, long-lasting tragedy is unnerving; nobody knows what to say in response to my stories. Friends tell me I'm strong, that I'm handling it well. I am not, I want to say but don't: I'm a lost little sister wandering the shores of calamity.

But I'm no longer the baby of the family, so I must do what I can. For Abby, I can meet her where she is, revisiting each topic or question however she reframes and repeats it, again and again. For Sal, I can hang on a little longer when I can't understand a word she says, or when her descent is so dizzying it makes me want to escape rather than bear witness to it.

In my weaker moments, I fret over an unanswerable question: will my brain fail me too? I don't often allow myself to go there. My sisters' dementias have flipped our birth order, and it's now my place to be the steady one, the big sister among us, for whatever time we have left together.

Jan M. Flynn's essays appear on Medium.Com and on her blog at JanMFlynn.Net. Her short fiction has won international awards and appears in literary journals including Midnight Circus, The Binnacle, Noyo River Review, Far Side Review, Grim and Gilded, and Bullshit Lit as well as anthologies. She is also the host and producer of a weekly podcast, "Here's A Thought," for people who overthink. She lives in Boise, Idaho, and is represented by Helen Adams of Zimmermann Literary, New York.


Progressive Supranuclear Palsy

The most common symptoms of PSP are recurrent falls (frequently backwards), reduced balance and mobility, reduced eye movements, speech and swallowing difficulties, and cognitive decline.

Gait instability with falls is the most disabling symptom and is often one of the earliest manifestations of PSP. Gait instability and falls are caused by a combination of problems, including loss of postural (adjustment) reflexes, difficulty lifting one's feet ("freezing") particularly when turning, stiffness of neck and trunk muscles, slowness of movement, and inability to look down at the floor. The average period from onset of symptoms to the first fall in PSP is 16.8 months, as compared to 108 months in Parkinson's disease After an average of five to eight years, worsening balance usually makes walking (ambulation) very difficult, if not impossible. A common early feature of PSP is motor recklessness (moving without thinking or caution). Patients may demonstrate the "rocket sign" where he or she stands straight up and falls back forcefully into a chair when sitting and standing.

The most specific diagnostic feature is the supranuclear vertical gaze palsy (inability to look up and down). Difficulty moving one's eyes in the downward direction is particularly suggestive of the disorder. Many PSP patients become messy eaters because they are unable to look down at their plate. Patients usually do not complain of abnormal eye movements, although they may notice blurring of vision and problems reading. As the disease progresses, horizontal eye movements may also become affected. PSP patients may also develop involuntary, intermittent forceful eyelid closure (blepharospasm) or difficulty opening the eyelids at will (apraxia of eyelid opening).

Obvious facial signs may be present with examples including decreased blink rate and a "startled" facial expression, which results from rigid facial muscles, but these signs may not be present in the early stages of the disease.

PSP patients may develop slurred and monotonous speech and trouble swallowing. Mealtimes may become increasingly time consuming and effortful because of issues related to PSP. In most cases, support with eating and drinking will become necessary. Impulsivity can lead to food cramming and rapid drinking. This, in conjunction with weakened throat muscles, increases the risk for aspiration of food, which may lead to pneumonia. A patient with PSP may lack any awareness of these swallowing difficulties. If swallowing issues are identified, such as coughing or choking on food or liquids, it is advisable to undergo evaluation with a speech-language pathologist, who can help advise on dietary modifications to aid in safe swallowing.

Most patients retain relatively normal thinking and memory function until the more advanced stages of the disease. Cognitive problems are associated with memory, language, executive function (set of mental skills that help planning and getting things done), and flexibility of thought. PSP patients may have difficulty with word finding, learning new tasks, insight, multi-tasking, and impulsivity. Signs of depression need to be monitored for, and support from counseling, psychology services, and mental health services may be appropriate.

There are several variants of PSP that may present in a somewhat different manner from the "classic" PSP described above.

PSP-parkinsonism affects about 30 percent of people with PSP and features include asymmetric limb rigidity, tremor, and a moderate response to initial trials of levodopa therapy.

Pure akinesia with gait freezing involves early gait problems, small handwriting, poor speech volume, and freezing of gait.

PSP-corticobasal syndrome mimics corticobasal degeneration (CBD), another atypical parkinsonism disorder, characterized by unilateral or asymmetric limb apraxia, dystonia and rigidity, and a variety of other motor and cognitive/behavioral symptoms.

PSP-progressive non-fluent aphasia may present with spontaneous non-fluent speech, meaning there is a loss of the natural, coherent production of speech, although comprehension of speech remains intact.

Most patients with PSP are initially diagnosed with Parkinson's disease, but when the atypical features, particularly early falls and abnormal eye movements, emerge, the correct diagnosis becomes apparent. CurePSP suggested the use of the FIGS acronym to aid in differentiation of PSP from Parkinson's disease:

  • F - Frequent sudden falls (generally backwards, occurring early in the disease)
  • I - Ineffective medication (medications for Parkinson's disease generally do not work)
  • G - Gaze palsy (difficulty moving the eyes vertically)
  • S - Speech and swallow changes
  • There is no definitive diagnostic test for PSP, therefore, the diagnosis is based on a detailed history, interpretation of physical examination signs and symptoms, and investigations to rule out other possible causes of symptoms. Neuroimaging with MRI (a brain scan) is useful to exclude strokes and other brain abnormalities that may present similarly to PSP. MRI of the brain often shows characteristic atrophy (shrinkage) of the brain, especially prominent in the midbrain, the uppermost segment of the brainstem, known as the "hummingbird sign." Testing may be useful to document sleep disturbances and changes in other physiological parameters, but these are not yet suited to aid in diagnosis.


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    I'm drawn to those who've faced life's unfair blows, carrying the weight of trauma. It's not about fixing; they're not broken. Their needs center around shedding the burden of feeling defective due to past experiences. Together, we navigate their history, aiming not to erase but to transform. The goal is a fresh perspective, a chance to unshackle from the past, and embrace a new lease on life—a journey filled with compassion, understanding, and authentic growth.

    I'm drawn to those who've faced life's unfair blows, carrying the weight of trauma. It's not about fixing; they're not broken. Their needs center around shedding the burden of feeling defective due to past experiences. Together, we navigate their history, aiming not to erase but to transform. The goal is a fresh perspective, a chance to unshackle from the past, and embrace a new lease on life—a journey filled with compassion, understanding, and authentic growth.

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    Person with city landscape in the background icon Medicare Therapists Does insurance cover therapy, prescriptions and other behavioral health services?

    In general, yes. Laws in the U.S. Require insurers to cover essential behavioral health care at the same level as other health care services. Most health plans require a medical diagnosis and treatments that are evidence based and medically essential. This means that life coaching and alternative therapies are not covered, nor is therapy without a diagnosis. Call the number on the back or your insurance card or visit your insurance company's website to review your Summary of Benefits. If you have insurance through your employer, your Human Resources department may also be able to answer questions.

    How much does therapy cost with insurance? The cost of therapy depends on your region, how much training and experience your therapist has, and the type of treatment. The rate for talk therapy generally falls between $100 and $250. For a client seeing an in-network provider, the cost of therapy is often similar to the cost of other health care services. Clients pay co-pays and may need to satisfy a plan's deductible before benefits kick in. What is the difference between In-Network and Out-of-Network insurance coverage?

    An in-network provider has contracted with an insurer to get paid directly for services, and to accept the insurer's rate of compensation. Clients are responsible for deductibles and copays. If a therapist is out of network, that means that the client pays the therapist directly for services at the therapist's regular fee. Out-of-Network providers often give clients a receipt so that they can file for partial reimbursement with their insurance company.

    Is it difficult to find an In-Network therapist? It is not unusual for therapists to limit the number of insurance patients in their practice, so it's important to check in-network availability when you schedule your first appointment. In regions and times where therapy is in high demand it may take longer to get scheduled with an in-network therapist. What is the difference between HMO and PPO insurance plans?

    HMO health plans only cover in-network services, there is no reimbursement for out-of-network providers. PPO plans often cover both in- and out-of-network services, though the client may pay more for out-of-network services.

    What is a Superbill?

    A superbill is a receipt for therapy services. It provides all the information required by insurance companies to reimburse you for out-of-network services, including the diagnostic codes for your care, the amount paid, and the dates and duration of care.

    Does insurance cover Online therapy? Many therapists who shifted their practice to online therapy during the pandemic have kept that arrangement. And most insurers continue to cover telehealth services, with a few exceptions. Preventive care (such as an annual depression screening) is often required to be in-person to be covered, and some states require prescribers of controlled substances to see those patients in person. Does insurance cover Group therapy? Many insurance plans provide coverage for group therapy provided there is a medical diagnosis for group members, but there are some noteworthy exceptions. For example, Medicare does not always cover group therapy. Group therapy tends to cost less than individual therapy. Does insurance cover Couples therapy? Most insurance companies do not cover the cost of couples therapy because there is no medical diagnosis or medically necessary treatment. However, a few plans will offer a limited benefit, so it is still worth checking with your insurance company. Sometimes therapy is covered for a couple when one person has a diagnosis and another family member joins them for joint therapy, but it is considered therapy for the medical condition that includes a family member as a listener or helper, not couples counseling. Without insurance, most clients pay between $100-300 per 60-90 min session for couples therapy. Often clients can find classes or workshops that make it more affordable to work on their relationship. And some employers offer benefit plans that help defray the cost of couples therapy.

    Learn more about Insurance Coverage and Finding Affordable Therapy






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