As I watched the press conference on the death of Gene and Arakawa Hackman I started to feel a dread in the pit of my stomach. Arakawa Hackman had died a full seven days before her husband and Gene, with dementia, lived in the house with the body of his wife and a caged dog slowly starving to death. What the hell went on in that house for seven days?
My parents still lived on their own into their late eighties. Every attempt to get them in-home care had been thwarted by them. I hired a nurse to come by twice a week and my father fired her the first day she arrived. I initiated the process to have my father’s driver’s taken away from him. He was a significant danger to himself and others on the road. This loss of his license left them alone and isolated in their rural country home. I had hoped this isolation would help them make the choice to sell their home and move into senior housing. They refused to be reasoned with.
By this time in her life, my mother was almost entirely deaf and confused. We called it confused then. She wasn’t confused, she had dementia and no one, not even her doctor, would say it out loud. She had little memory of anything that happened around her, she confused day and night quite often and she was unable to do things like cook. While my mother’s dementia had progressed, my father’s hadn’t progressed as fast. He did the wash, made the meals and generally looked after my mother. My dad had regular visits to the VA hospital to look after his health. I believed—wrongly—that things were working out.
I got a message on my phone while at work from my mother that my father was “out of it” and she did not know what to do. That call had come around noon. I wasn’t able to check my phone until I left work around three. When I called my mother back, she was frantic and unable to tell me anything other than my father was “out of it.” She told me he was conscious and breathing but he was behaving strangely and “out of it.” I called a sibling and started my 90-minute drive to their home. I knew this was not going to end well.
When I walked in the door, my father was sitting at the dining room table speaking gibberish. I knew immediately he had had a stroke. I dialed 9-1-1. The next few hours were filled with a sinking dread that is almost impossible to describe. My father jabbered on, like a baby, unable to convey a single coherent thought. In the ER, the doctor told me my father had had a massive stroke.
“If we can get to them within the first few hours, there is treatment. In your father’s case it is too late,” the doctor explained.
“When did he have the stroke?” I asked.
“At least forty-eight hours ago. Probably closer to seventy-two hours.”
He’s been like this for three days? What the hell went on in that house for three days?
“A blood clot formed and went to his brain.”
“But my dad is on blood thinners. He has a pacemaker.”
“Your father hasn’t taken his medication in a very long time.”
“How long?”
“Weeks, at least. Probably longer.”
Later, when I asked my mother why she hadn’t called anyone, she simply said she had forgotten how to dial a telephone. My mother was unable to tell me what went on inside the house for three days. Did my father ever lose consciousness? Did they eat? Did they sleep? Did either of them take any of their prescribed medication? Did my father do anything strange? Did they try to leave the house? Did my mother try to get help? How many times did she try to call someone? Every time I think of those three days, I get a hollow feeling in the pit of my stomach and the question returns. What the hell went on in that house for three days?
We are living in an unprecedented time when the Baby Boomers are aging out. Dementia, once a disease that was rarely seen in public, is everywhere. Affordable nursing homes and assisted living have long waiting lists and are seriously understaffed. Reliable home care is hard to find. There is little public awareness and education about how to care for aging parents. I want to make myself absolutely clear. Dementia is not a minor personality disorder. It is not forgetfulness. Dementia is a dangerous and debilitating fatal disease.
The New York Times printed a great article on how to continue to care for someone with dementia. Here are the highlights:
Stay social.
People with dementia may feel uncomfortable or anxious around faces they don’t recognize, and stigma can lead some families to retreat from social life. But becoming reclusive can worsen the disease, said Dr. Helen Kales, a geriatric psychiatrist at the University of California, Davis. Isolation can accelerate cognitive decline and even puts caregivers at a higher risk for developing dementia themselves.
Dr. Kales therefore recommends that patients and their loved ones keep attending social events and trying new things. A couple she worked with started square dancing when one partner was in the early stages of dementia.
“If there are sort of fresh eyes for a situation and respite, that benefits everybody,” she said.
Set up a caregiving team.
Many primary caregivers feel reluctant to impose, and other family and friends may not know how to help, Dr. Gitlin said. To address this, she suggests holding a meeting and assigning roles. For example, a sibling might plan to call every morning or evening to check in. If the family member with dementia doesn’t answer, they could request a wellness check.
Nancy Goode, executive director of the Margaret Jo Hogg Alzheimer’s Outreach Center in Albany, Ga., which provides adult day care services and support for caregivers, said she tells caregivers to have at least five people they can call for help in an emergency or to regularly help. This could be a friend who might agree to visit every Wednesday for a few hours so the caregiver can run errands.
Seek help from an expert.
When a family member receives a dementia diagnosis, it’s difficult to foresee how the patient’s needs will change as the disease progresses, Dr. Gitlin said. So she recommends caregivers meet with an expert, like a geriatric social worker or a geriatric nurse practitioner, who can evaluate the safety of the patient’s home and how much support will be needed.
That sort of advice doesn’t just come along with the diagnosis, she said, so families have to seek it out and pay for it.
“It seems simple,” she said, “but nobody is given the knowledge and skills that are needed.”
Consider technology that can help monitor your loved one.
In-home cameras and motion sensors can help relatives who live far away check on family members with dementia. For example, a device can be affixed to a refrigerator that sounds an alarm if the door isn’t opened for a long time; another can be worn by patients and send an alert if they fall. It’s important to discuss privacy concerns and data security when considering such tools, which are becoming more advanced and widely available, Dr. Gitlin said.
“We don’t want to make this all about bells and whistles,” Dr. Kales said, “but I do think that we want to use technology as an adjunct to help people as they go on this journey.”
Take care of yourself.
The demands of providing for someone with dementia can be so consuming that many caregivers neglect their own health, Ms. Goode said.
There were a lot of red flags I missed with my parents. There were a lot of things I should have done. I know there are many things we have to fix about caring for our ageing population. But I know way too many people with dementia do not receive adequate care. I do not one more person to ask What the hell happened in that house?