Skip to main content

The language of dementia

I didn't know my Grandmother very well as I was growing up. In fact, I'm not sure I even liked her very much when I was younger. I first met my father's mother when my family moved to Taiwan in 1979. I was five and in the middle of kindergarten. My grandparents lived with my uncle, aunt, and 3 cousins in the small apartment above my family's unit in Taipei. My grandparents spoke primarily Taiwanese, a dialect I could barely understand (I was self-congratulatory when I was clever enough to announce to my Dad "It's supper time" in Taiwanese). My parents, siblings and I lived in Taipei for almost 3 years, after which point my mother brought us back to California. My Dad stayed back in Taiwan to work for several more years.

In the end, most of my Dad's family moved to the States, my grandparents with them.
My Grandfather took some English classes which helped us communicate with each other. But my Grandmother remained someone to whom I would sheepishly nod and smile (and then later quietly ask my parents or cousins what she said).

I was not close to my Grandmother at all through most of my adult life. She came from a generation and culture that was foreign to me--one in which women did not work outside of the home. Her life and perspective were focused on women as subservient to men, and daughters and daughters-in-law in service to her. There was a fair amount of intergenerational tension between my mother and my paternal grandmother. I tended to side with my mother. (On hindsight, I realize my Grandmother was simply living and believing tenets in the only way she could, in the way she herself was brought up) I recoiled from her traditionalism and conservatism, especially as I delved further into my own life and profession. During this time, I stayed fairly removed.

But then my Grandmother began to develop dementia. No one in the family quite recognized it at first. But as a geriatrician, I knew that Ahma was not just 'forgetful.' She experienced multiple hospitalizations, all manner of illnesses, and with each one, came home frailer and more forgetful. As I watched her grow thinner, weaker, and more demented, my relationship with her grew deeper. I only saw her every few months, but during my visits, she would never fail to ask me, "Who are you? Ah! Helen. Do you have children? Are you married?" to which I would reply, not yet, Ahma, some day. Three minutes later she'd ask me the same question. And, somehow, even though with my own mother my patience wanes with repeated questions, with my Grandmother I felt it made us closer.

Her dementia progressed. Her husband, my Grandfather, also developed dementia--with a predominance of paranoia and agitation which was so hard for my family. Eventually my parents and uncles and aunts made the difficult decision of placing my grandparents in a nursing home. I know it broke my father's heart as the eldest son who was supposed to care for his parents forever.

In the last 2 years, my Ahma continued to decline. She could no longer walk or feed herself. She still spoke a few words--mostly in Taiwanese which I could barely understand. Most of the time dementia is horrific and traumatizing for stealing the personalities and insights of the people we love. But, oddly, in the case of my Ahma and I, our relationship through the language of dementia grew in ways it never would have if I was still trying to decipher her Taiwanese. I no longer recoiled at any expectations that women serve. Her only expectation in her demented state was kindness, help with her basic activities, responding to a smile with a smile, and holding hands. I got this. I would sit with her and rub her hand, give her a big smile, and tell her again, "Not yet, Ahma, some day."

She died last Thursday. Quickly and suddenly after cracking a small smile and saying my Grandfather's name.

by: Helen Kao

Comments

m fontboté said…
beautiful post. thank you. When you say "And, somehow, even though with my own mother my patience wanes with repeated questions, with my Grandmother I felt it made us closer." it has made me think, as now that my mother has dementia, I don't lose my patience anymore and I can tell her easily how much love her o to cuddle her as I had never dared. Dementia makes personality changes not only in its sufferers but also in carers.
Sara said…
Very beautiful. Despite dementia or perhaps because of it, we touch that inner place of love and kindness that competency tends to hide from view. My condolences on the loss of your grandmother.
Amy Corcoran said…
Helen - Thank you for sharing. Please accept my condolences. Your story has me reflecting on the loss of my grandfather 6 years ago from dementia. His wife, my grandmother, continues to say that hospice was called in too late. I am reminded of the importance of palliative care for this special population and their caregivers.
Alex Smith said…
So well written. Thank you for the story Helen and condolences. Reminds me of my wife's Taiwanese grandfather. Not clear how much he could process in his last year, but he seemed to acknowledge our son, his first great grandson.
John said…
Thanks Helen for your story.
I like to describe our family's experience with my father's dementia as tragi-comic.
As a health care professional myself I saw it coming years ago but had no idea his path would be so long and incremental. He is still at home and can do most things for himself. But will greet me multiple times in an hour as if I had just arrived on the scene. Yes it is hearbreaking, but as he progressed and lost some inhibitions there was a time when he opened up to his family more than he had before the illness.
Now with no short-term memory at all we watch him and wait. We smile and try to laugh if we can, both with him and amongst ourselves. The other day, as my mother (his wife) coughed on a glass of water, he jumped up and tended to her with a tenderness and concern I have never witnessed before. My eyes filled with tears. It was so beautiful in the moment and in its poignancy. It was like he was reaching to shore from a ship moving out to sea. A fitting simile as he has been a sailor all his life.

Popular posts from this blog

Dying without Dialysis

There is a terrific article in this weeks Journal of Pain and Symptom Management by Fliss Murtagh of King's College in London about the epidemiology of symptoms for patients with advanced renal failure who die without dialysis.  This study is important because while we know that patients with advanced renal failure have a limited life expectancy and the average age of initiation of hemodialysis is increasing, we know little about the alternatives to hemodialysis.  Specifically, we know nothing about symptoms affecting quality of life among patients who elect not to start dialysis (so called "conservative management" - is this the best label?).  This article provides a terrific counterpoint to the article in last years NEJM showing that nursing home residents who initiated hemodialysis tended to die and decline in function (see GeriPal write up here). 

The study authors followed patients with the most advanced form of chronic kidney disease (the new name for renal failu…

The Dangers of Fleet Enemas

The dangers of oral sodium phosphate preparations are fairly well known in the medical community. In 2006 the FDA issued it’s first warning that patients taking oral sodium phosphate preparations are at risk for potential for acute kidney injury. Two years later, over-the-counter preparations of these drugs were voluntarily withdrawn by the manufacturers.  Those agents still available by prescription were given black box warnings mainly due to acute phosphate nephropathy that can result in renal failure, especially in older adults. Despite all this talk of oral preparations, little was mentioned about a sodium phosphate preparation that is still available over-the-counter – the Fleet enema.

Why Oral Sodium Phosphate Preparations Are Dangerous 

Before we go into the risks of Fleet enemas, lets spend just a couple sentences on why oral sodium phosphate preparations carry significant risks. First, oral sodium phosphate preparations can cause significant fluid shifts within the colon …

Does “compassionate deception” have a place in palliative care?

by: Olivia Gamboa (@Liv_g_g)

There is broad consensus in the medical community that lying to patients is unethical.  However, in the care of patients with dementia, the moral clarity of this approach blurs.  In her recent New Yorker article, “The Memory House,”  Larissa MacFarquhar provides an excellent portrait of the common devices of artifice, omission and outright deception that are frequently deployed in the care of patients with dementia.  She furthermore explores the historical and ethical underpinnings of the various approaches used in disclosing (or not) information to patients living with dementia.

Ms. MacFarquhar introduces the idea of “compassionate deception,” or the concept that withholding truths, or even promoting outright falsehoods, is a reasonable and even ethical choice for those caring for patients with dementia.  To the extent that it helps a person with dementia feel happier and calmer, allowing them to believe in a gentler reality (one in which, say, their spo…