Familiar Strangers

"Even if my memory is gone, my past is not erased; the memories I have lost will live on in the minds and hearts of those I spent my life with."-Japanese writer Hiroshi Ogiwara, in Memories of Tomorrow.

Unwilling to accept the condition of their loved ones and forget how they once were, the families of dementia sufferers can be left heartbroken, resulting in conflicts between the patient and their closest relations.

"Alzheimer's may have taken my wife from me, but as I enter my twilight years it has effectively given me a little girl to keep away the boredom." These touching yet sad words were written by Li Tsai-ching after his wife fell victim to Alzheimer's Disease. Having one's partner transformed from supportive other half to blank slate, to someone who needs all the care and attention of a small child, can be a dramatic change.

"As my father's memory slipped, it started to seem like he was being replaced by a 'familiar stranger,' and life became full of conflict, misunderstandings, and clashes," says Lin Hsiu-ling, discussing the emotional rollercoaster she experienced as she watched her father gradually disappear to Alzheimer's.

Mrs. Chang's "selective amnesia" has left her unaware of the changes in her family situation, leaving her lost in recollections of her better-off younger years.

A daughter's burden

"Dad, we're home, time to get out of the car! No, you don't have to pay me a fare!" Such is the mantra of the family of a person with dementia. The specifics may change, but the same terrible absurdity of the situation never does. "I really do love her, but after she started slipping, she forgot about the financial state our family was in and was still clinging to the good old days of her youth," says Chang Mei-chun, a widow whose 81-year-old mother's dementia is still in the "moderate" stage. "But having to face her every day and be unable to communicate with her.... Sometimes I just lose it." While Chang may look like a younger version of her mother, she says she increasingly can't understand her, and the two are constantly at loggerheads thanks to her mother's inability to talk sense and "selective memory." "It's an all-day shouting match in our home sometimes, to the point that I think the neighbors are more or less used to it now."

"Losing my mother was a huge blow to my father," says 29-year-old Yuan Ju-yu. Yuan, the second oldest in her family, left full-time employment three years ago to take care of her father after his dementia worsened.

Her father's illness hit hard and fast, says Yuan. He used to be a stamp collector and avid reader of newspapers, but when she noticed he'd lost interest in these things, Yuan started to get concerned. At the same time, her father had stopped going to church, and was becoming increasingly forgetful, failing to recall things that had happened only minutes before and repeating the same questions over and over. Yuan quickly got him to a hospital, where doctors soon discovered a blood clot had formed in the elder Yuan's brain, causing a mild stroke and leading to the onset of dementia.

Once Yuan's father's illness had begun, she watched as he became less and less able to handle complex situations. He started "simplifying" things, wiping his face with any old cloth he grabbed, walking into shops and taking things without having any money on him, pouring fruit juice into the hot-pot, and so on. Sometimes his brain would "short-circuit" dramatically and he wouldn't even be able to find his way home. This has happened four or five times, says Yuan Ju-yu, and once he came back he never said anything about what had happened, no matter how much anyone asked him, until one day he broke down and said, "I'm old, you all need to start looking out for me!"

Since taking her father to art classes at the Wisdom School, Yuan has seen a new side of him. "He's much more loveable now," she says. Her father, now 86, used to be a man of few words and fewer smiles, someone that could be hard to relate to. But since his illness, he has become more childlike, and now laughs and smiles more.

Dementia has meant 86-year-old Mr. Yuan has laid down his old hard-bitten facade and shown his childlike side.

A 36-hour day

Unfortunately, sufferers of Alzheimer's and other forms of dementia will generally continue to get worse, and as their behavior gets harder to control or understand, caring for them can become even more difficult.

To take care of her ailing parents, Tien Chia-chia (not her real name) took unpaid leave from her job in the United States as a nurse and returned to Taiwan.

"On my own, I can handle a good ten elderly people who've lost physical capability, but I'm struggling with just two-my own parents-who've lost mental capability," says Tien. Since people suffering moderate dementia are still mobile, they need to be watched closely 24 hours a day. Ideally this would be done by three people on rotation, but Tien's mother, who ran the household for over 40 years and was always in control of household affairs, has not only chased out the caregivers that came to help her, but even sees her own daughter as an "intruder."

Tien's 86-year-old father, whose dementia is still mild, and her 82-year-old mother, whose dementia is moderate to severe, can still move around, making it up four flights of stairs with no problems. Their teeth are strong, their appetites healthy, and they seem outwardly in good health for their ages. But when they leave the house, sometimes they'll get lost and Tien constantly has to pick them up from the local police station. Sometimes they imagine their daughter is out to harm them or take their money, planning to poison them and flee to the US with her loot. The family's daily schedule can be pure chaos. At one point, Tien was left barely able to sleep for three full weeks watching over her parents. "It almost drove me crazy," she says. Ultimately she was able to get help from friends, getting her mother into a hospital for two days and getting her father, whose symptoms are relatively mild, a day-time caregiver for a week. This gave Tien the chance to catch her breath and step back from the brink of a meltdown.

"Really, though, all this caring work is hopeless and not going to pay off," says Tien. For sufferers of dementia, there is no hope of recovery. All their families can do is watch as their condition becomes ever worse. "All I can do is look after them and make sure their lives are comfortable, safe, and clean. At least that way I can give them some dignity and leave myself with no regrets," says Tien, who is 59 and single. She long since steeled herself to the need to take care of her ailing parents in their final years, but she is disappointed with Taiwan's relative lack of resources for those caring for elderly people with dementia.

Take for example in-home care. In the US, professional nurses are dispatched to do in-home assessments of people's conditions, while in Taiwan the job is left up to social workers, generally with no background in healthcare. Taiwan's assessments are also more oriented toward physical issues: Does the patient need to use a cane? Can they feed themselves? Can they use the toilet? "People with dementia can do all of that, but they can get things mixed up-they'll hit people with the cane, have dinner three times in a day and still accuse you of trying to starve them, and that kind of thing," explains Tien. There are major differences between being physically and mentally incapable, and you can't use the same standards to assess the needs of both.

The joy of forgetting

A Mr. Lin suffered cardiovascular disease which led to what is known as "vascular dementia." Lin's second-eldest daughter, a nurse, first noticed something wasn't right when her father's hand started trembling when he tried to use chopsticks. She quickly got him to the hospital and he started pharmaceutical treatment, but his negative mindset, lack of friends, and unwillingness to stay active meant his condition quickly worsened.

In seven short years, Mr. Lin's condition got so bad he began defecating and urinating wherever he felt like it, hiding food and drink, and even messing with and hiding his own feces. Sometimes he would fire up the gas stove and boil pots dry, or even light candles in the middle of the night, causing his family's collective heart to skip. "It was like my dad had reverted to being a toddler, sleeping all day and mucking around all night," says his daughter Lin Ling. His actions left his four daughters and their mother with their heads spinning. "Can you imagine what it's like when a five-foot-seven, 80-kilogram grown man loses all self-control?"

Out of safety considerations, and concern for their mother's ability to handle their father during the day, the sisters risked the scorn of their friends and family and put their father in a nursing home run by Chang Gung Memorial Hospital. "In this kind of situation, the most important thing is what the people in the house think, and no-one else has any right to tell them what to do," says Lin Ling. Having a patient who no longer recognizes his own family and can't be reined in with words is something that love alone can't solve.

Over the past five years in the nursing home, Mr. Lin's condition has continued to worsen. In the past, he was able to go home for holidays, but in the past two years his muscles have begun to atrophy, leaving him less able to get around, so now his daughters and wife spend holidays with him in the home.

"Dad can't talk anymore, but he smiles when he sees us. Even though he doesn't recognize who we are, he still knows we're friendly," says Lin. Comparatively speaking, she says, even having lost his self-awareness and memory, her father is still happier than others who have lost physical ability but are still fully mentally functional. According to Lin, her father's "obliviousness" means he doesn't know what he's lost, and this has been a huge comfort for her. The same can be true for many others in the same situation.