The Wrong Disease

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My mom requires 24-hour care for a disease that is both debilitating and painful. A nurse monitors her physical condition and medications. Aides help her toilet, shower, dress, and eat. Activities and meals are designed to ease the effects of the disease and a large and busy staff constantly supervises her safety and well-being. This care costs $6200 a month and is not covered by Medicare. In one year, she has spent $72,000 of her own savings. Because she is physically healthy, my mom may need this care for 5–10 more years. Perhaps longer. Once she outlives her savings, she will be impoverished enough for Medicaid and we will struggle to find a facility specializing in her disease that will accept Medicaid recipients. Most do not. This is the reality of Alzheimer’s disease.

After my dad died, I found a yellow legal pad where he had penciled out his assets and my mom’s future living expenses. He didn’t include health care. Like most people, my parents assumed their medical expenses would be covered by Medicare. But to be on the safe side, they also purchased Medicare supplemental plans for prescription drugs and coverage gaps. Then they built up their savings so they wouldn’t need to “live on the dole” of government handouts, something my proud parents would have found particularly humiliating. But because my mom got the wrong disease, their money is running out fast.

5.7 million Americans are living with Alzheimer’s disease, costing the nation $277 billion. By 2050, the number of victims is projected to rise to 14 million, and the costs to $1.1 trillion. Yet money for research has lagged behind other diseases, even though researchers believe that with proper funding gains can be made within the next ten years. This lack of funding may be the result of something unique to Alzheimer’s. It is the only serious disease where unpaid family caregivers are expected to treat it at home. The $232 billion a year they save our nation prevents it from confronting the medical crisis destroying millions of lives.

When my mom’s doctor, a geriatric specialist, diagnosed her with Alzheimer’s, he was confused at my look of despair. “It’s not like cancer,” he said. “She could live with it for 10–20 years.” He wrote a prescription for an antidepressant, recommended we return in six months, and walked down the hall to his next patient. By comparison, my dad’s cancer diagnosis was immediately followed up with an extensive treatment plan and a team of specialists. The chemotherapy, radiation, surgery and two weeks of hospitalization racked up over $800,000 in expenses to extend his life by nine months. And Medicare covered every bit of it.

Medicare doesn’t cover “custodial care” which it defines as “non-skilled personal care, like help with activities of daily living like bathing, eating, dressing, getting in or out of a bed or chair, and using the bathroom. It may also include the kind of health-related care that most people can do themselves, like using eye drops.” The irony is that Alzheimer’s destroys the ability to do nearly anything “most people can do themselves.” Those plaques and tangles prematurely strangle and starve and shrink the brain. It is not a normal part of aging.

To Medicare, and most people for that matter, Alzheimer’s is just a memory problem. A little “non-skilled personal care” is all these people need. But caring for sufferers of Alzheimer’s and other forms of dementia is not like inviting your mother to stay in the guest room where she will happily sit in a comfortable chair and live in the past. Dementia is a particularly demanding disease because it doesn’t just destroy memory. It eats away at parts of the brain essential for reasoning, emotions, even bodily functions. Its victims are held hostage by their malfunctioning brains. They will do things even the most self-destructive teenager would never do. Microwave their socks. Step out into heavy traffic. They must be monitored every minute of the day, even when they are in bed. Their brains will wake them up and whisper strange messages, tell them to flee, to find their dead husbands, to get home even if they have to walk the entire way.

When my sister and brother-in-law moved our mom into their home, they essentially took on another full-time job. Any time they left the house, they wrote detailed notes so she wouldn’t panic. In the evening, they answered her repetitious and anxious questions. She begged them to take her home, accused them of holding her prisoner, cried that she was ruining their lives, and threatened to walk home herself. Every answer and reassurance would need to be repeated five minutes later. At night, she paced the hall outside their bedroom, wringing her hands and writing apologies on scraps of paper. She lived with nightmares and convoluted thoughts, desperate to escape from the tortured prison of her own mind. And each morning she laid in bed and cried, refusing to get up, to take her meds, to eat or shower.

Dementia demands more of caregivers than other diseases. Its slow decline of eight to twenty years adds increasingly difficult caregiving burdens — bathing, diapering and feeding. But Alzheimer’s does something particularly insidious. It destroys memory and reasoning but retains the ability to feel anger and fear. Sufferers are aware of their own helplessness and confusion, the indignity of every diaper change, and the suffering of their caregivers. The cost to family systems is far more than $323 billion. Caregivers sacrifice careers, relationships and their own physical and mental health to dementia care. Almost 70% of dementia caregivers suffer from depression.

But when caregivers finally seek professional help, they face condemnation and guilt. Despite years of research, the only treatment for dementia is a facility designed to provide as much comfort and safety as possible. Patients are better served when they are removed from the emotional entanglement of family caregiving. Routines are established to give patients much-needed stability. Nurses and aides administer and monitor medications to ease patients’ sufferings. Trained staff provides mental and physical stimulation simple enough for a dementia sufferer’s limited reasoning skills with calm, professional confidence.

But Memory Care facilities are also designed to accommodate the most challenging part of dementia. Patients are mentally broken, but often physically strong. Movement without reason results in harm to themselves and others, but dementia patients panic if they feel trapped. It’s a tricky balance of restraint and safety. The facility must be large enough for patients to move freely, but small enough so staff can supervise them at all times. And most importantly, every door must be secured with alarms and staff who can immediately respond and find the patient before they are harmed. 24-hour custodial care is as essential to dementia patients as chemotherapy is for cancer.

My sister and I searched for months to find a Memory Care facility we felt was right for our mom. When we moved her in, the guilt was as enormous as the financial costs. This is when most families discover the biggest Medicare gap of all. The only treatment for dementia patients has no financial assistance. If families try to find it, they will only discover “tips” for private pay. Take out long-term care insurance — a costly plan with strict qualifying requirements, steep rate hikes, and limited benefits. Add a rider to a life insurance policy. Open a health savings account. Take advantage of veterans’ benefits. Use home equity loans. What is rarely mentioned in these discussions is the injustice of expecting individuals and their families to cover the medical treatment of this disease.

What should Medicare cover? Everything the disease has destroyed in its victims. Had my mom not had the bad luck to get Alzheimer’s, she could have lived in an Assisted Living facility at $3,000-$4,000 a month. But she requires an extra $2,000-$3,000 for the care that is unique to this particular disease. 24 hour lockdown with constant supervision is not a normal part of aging. It is the sad result of a disease that has physically ravaged the brain.

Until Medicare starts treating Alzheimer’s and other dementias like every other disease, our nation will never understand the full magnitude of its costs. $232 billion is a painful amount. But perhaps then it will provide the necessary funding and research the disease deserves instead of forcing families to pay for the unlucky medical hand they were dealt.

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