It typically happens that when someone experiences a catastrophe in life, such as the onset of dementia, or another profound trauma or grief, they can lose their social connections and gradually become deeply isolated in their circumstance. What we all need at some point is an “all-weather friend,” and Mary Cail was at The Lodge at Old Trail August 18 for its Third Thursday program to talk about her book Alzheimer’s: A Crash Course for Friends and Relatives.
“It’s a book about how to be supportive,” said Cail, who blogs for Maria Shriver and the Huffington Post and has had op-eds in the LA Times, the Chicago Tribune and the Miami Herald. She is also the author of Between Jobs: Ten Ways to Help a Friend Who’s Unemployed.
The isolation happened to her. Cail is now a caregiver to her parents, who depend on her for all their arrangements, including around the clock care by nursing assistants and managing all their health and financial affairs.
In her 40s she experienced a year of personal tragedy. At the time she was an assistant professor of psychology at James Madison University, working on a textbook. She lost her first pregnancy, after much sacrifice to conceive, and then discovered that her husband Wayne, a doctor at U.Va. Hospital at the time, had a tumor on his brain stem. He endured a 9-hour surgery to remove it and survived a long recovery, only to confront a career crisis that he resolved by taking his own life. She found him dead in his office one Sunday night when he failed to come home as expected.
“Everything I cared about was in pieces,” Cail said. “During this time I only had my friends. They were my lifeline.
“You divide the world into two groups, the ones who’ve been through it and the ones who haven’t. Most are in the second group. I wanted a resource, hence this book on the concept of the all-weather friend, someone who is supportive in a time of trouble. The idea is to develop informed compassion.”
She wrote the book in a partnership with the Alzheimer’s Foundation, she said. “Alzheimer’s is the worst age-related loss—the ability to think. Dementia is not a disease, but a symptom of a disease. The two main players in the situation are the diagnosed and the caregiver. Helping one helps the other. Think about how it would feel to lose your ability to take care of yourself. You need to know your right to be loved won’t be taken away and that your right to dignified care won’t be taken away.
“Caregiving is incremental loss and grief. It takes everything you’ve got. Both the victim and the caregiver lose their normal access to friends. It’s very isolating.” Both need social contact, she said, but neither is in a position to initiate it.
Dementia is usually a “retrogenesis of capability,” Cail said, meaning that one loses abilities in the reverse order of gaining them and that as dementia advances the victim is reduced to ever-more childlike abilities. She said that 57 different diseases have dementia as a symptom but that her tips are good across all the causes.
Frequently Alzheimer’s first manifests itself in a loss of “your personal GPS system,” she said, in forgetting and in getting lost. She recommended that a friend be a care partner. “It’s a stage where other people don’t see the changes happening. We have an instinct to try to make things better. But instead say, ‘This must be so hard for you.’ Period. Don’t try to fix it. Just recognize it.”
The second stage is the loss of short-term memory. “The hippocampus degrades. It’s hard to predict what will be forgotten. With an early Alzheimer’s victim, start a conversation by telling something, not by asking a question. Don’t ask what’s been happening.”
The next stage of the disease is severe atrophy of the hippocampus, the seat of memory, learning and emotion. “They lose orientation in space and time. Remember this adage: if you’ve seen one person with Alzheimer’s, you’ve seen one person with Alzheimer’s. It’s quite different in different people. With their nonsense talk, shift to non-verbal responses. Accept whatever the victim says and say something that answers their need for conversation.” Your response needn’t follow logically from what the sufferer said.
“Pause in conversation with Alzheimer’s victims. Don’t contradict them, don’t correct them, accept whatever they have to say. To the caregiver, listen and don’t advise.” Caregivers don’t want to hear any more advice, such as suggestions about nursing homes, she said.
She had one last tip: “Do the remembering. The victim and the caregiver find that their friends fall away. A friend can help keep the memory of who the person was before the disease. It’s needed for the caregiver.
“These tips are not hard to do. They are really easy.”
Cail said her “grief and heartache over Wayne’s death was an involuntary wail for two years. I made a decision then to do whatever a friend asked me to do.” She meant she would agree to any invitation. She needed friends. Once in that spirit she went to a U.Va. basketball game and a former colleague of Wayne’s stopped her in an aisle without saying a word and hugged her. “It meant so much to me,” Cail said.
“You can make a difference.”
Cail said her cause is now the all-weather friend website, which she acknowledged has been slow to get going. Perhaps that’s because most people are in the haven’t-been-through-it group and the message about informed compassion sails past them because they haven’t felt the need of it.