Seeking Comfort and Peace for Dementia
For this family, devastating news means trying to arrange hospice care
Editor's note: This is the eighth article in a Next Avenue series by Dan Browning about his family's experience coping with his wife's frontotemporal dementia, or FTD. Find earlier posts here.
Dementia is a relentless and remorseless disorder. Whether it moves quickly or slowly or changes up its speed, it silently closes in, picking off weakened brain cells. When you’re a caregiver for a loved one with dementia, you learn to enjoy today, no matter how difficult, for tomorrow things will surely get worse.
My wife, Liz Cummings Browning, has been living with the behavioral variant of frontotemporal dementia (FTD). She was diagnosed in August 2012, but it’s clear in retrospect from her increasingly bizarre behaviors that it was stalking her for several years before that.
FTD is a fatal brain-wasting disease that usually strikes people between 40 and 65 years of age, though it sometimes ignores those boundaries. It reveals itself by gradually altering the persona as it kills off the brain’s executive control center above and behind the eyes, or its speech center in the temporal lobes. Although FTD is the second most-common form of dementia in younger adults after early-onset Alzheimer’s, it’s fortunately relatively rare.
On Jan. 21, I learned that my wife not only had behavioral FTD, but also an even rarer form of the disorder called FTD with Motor Neuron Disease (MND), which leads to paralysis of the muscles that help us breathe. Think amyotrophic lateral schlerosis (ALS), or Lou Gehrig’s disease. Liz’s mind and body were under a two-pronged siege.
Delivering the Diagnosis
Dr. Rebecca Rossom looked sick to her stomach when she delivered the bad news.
“Great,” I said. “So she will either drown from pneumonia or suffocate to death from Lou Gehrig’s.”
Rossom nodded. She said she thought “aspirational pneumonia” — one of the most common causes of death in people with FTD — would take her before the worst ravages of ALS set in. She scheduled an appointment with Dr. Michael Rosenbloom, a behavioral neurologist, to confirm the diagnosis and discuss the possibility that the disease might be inherited.
Rosenbloom did confirm it, saying it had progressed to the point that he wouldn’t need to use the discomforting tests called electomyography and nerve conduction velocity.
We talked about genetic testing because we have a son, 21, and a daughter, 19. Rosenbloom said he could set us up with a counselor at the University of California in San Francisco, a leading FTD research center where he’d been a fellow. But he cautioned that genetic testing can open a Pandora’s box. For instance, our children might never qualify for long-term care insurance if a genetic link is found.
Rosenbloom said it was extremely unlikely that Liz inherited the mutation. Hereditary causes are found in just 10 percent of ALS cases. And because Liz’s parents showed no signs of dementia before they died at age 82, it’s extremely unlikely that she has a hereditary form of FTD.
A Frightening Incident
Since our meeting with Rosenbloom, Liz’s swallowing disorder, called dysphagia, has continued to worsen.
On Saturday, Feb. 22, she inhaled a piece of cereal that set off a 40-minute coughing jag. Fluid streamed from her nose and mouth. As she gasped for air, she made a gurgling sound like she was blowing through a straw. I tried the Heimlich maneuver, but it did no good. There was nothing to eject. I tried squeezing her diaphragm from behind to help her get more oxygen but that did no good.
“I’m sorry,” I said across the breakfast table. “Nothing I do is helping.”
My son, who has been diagnosed with Asperger’s syndrome, yelled that we needed to call the hospital.
“No, we’re not doing that,” I said. “Go downstairs.”
He was shocked, but complied.
Liz’s eyes were half-closed and bloodshot. She appeared to be pleading for help, but couldn’t speak. Her head bobbed unsteadily from side to side. I called her sister Margaret and told her to come over immediately.
Just as Margaret arrived, Liz began to settle down. Margaret rubbed her back, and we both cried.
“I think it’s time we checked her into hospice care,” Margaret said.
I balked. I wanted Liz to remain at home. But Margaret pressed the point, noting that we want to keep her as comfortable as possible. “I think this is the weekend,” she said.
I called our HMO, HealthPartners, and asked for an explanation of hospice care. They said nurses could provide palliative care in our home. To qualify, two doctors would have to give their opinion that Liz had less than six months to live.
Liz recovered quickly from the choking incident. She asked to be taken for a haircut and color before lunch. She seemed happy, though she was more agitated than usual, and the haircutter struggled to keep her still.
We saw Rossom two days later for a previously-scheduled appointment. I played her an audio tape I’d made of Liz’s breathing during her choking incident.
“She’s clearly aspirated something,” Rossom said. “But her immune system is strong. She looks good.”
Even so, Rossom recommended Liz for hospice care. Two days later, a nurse and a social worker from HealthPartners came to the house to do an extensive interview.
The social worker noted that Liz was still active because she paced around the room, was friendly, and although her conversation wasn’t on point, she could still interact some. Most ALS patients they see for hospice are immobile, the social worker said. Most FTD patients they see for hospice are further gone as well. The criteria for hospice care are strict, she said.
I asked how many people they’ve seen with both FTD and ALS. None, the nurse and social worker said. Liz was a first.
I said I wasn’t surprised; just 10 to 15 percent of FTD patients develop ALS. I made the case that Liz met some criteria for hospice under an FTD diagnosis, and some criteria under an ALS diagnosis. Surely they could combine them, I argued.
The nurse spoke to the medical director, who approved Liz for hospice care in our home. It was a minor victory but not one I could celebrate, under the circumstances.
“Have you picked a mortuary?” the social worker asked as we filled out the required forms.
“No,” I said. “I haven’t thought that far ahead.”
Are you dealing with an FTD diagnosis? The Association for Frontotemporal Degeneration (AFTD) can help. Visit its website at www.theaftd.org for information and resources. AFTD also offers a helpline (866-507-7222) and email support. Another good website is http://www.ftlda.org. The site's founder, Terri Bratton, lost her brother to the disease.