Dementia and the Personal Care-giver
The professional care-giver’s job is not easy. Caring for a loved one suffering from dementia is even harder to do. The professional has learnt to keep a certain emotional distance. The family care-giver cannot escape the burden that is coupled with love.
Here then, to fellow care-givers, is my first advice, which I shall cover with five other pairs of Do’s and Don’ts (DD), making reference to my mother’s Alzheimer’s disease.*
DD#1: Don’t provide care-giving alone. Take breaks.
Nobody will do the care-giving better than you, but you must let others help, or you will burn out, lose objectivity, become resentful and angry toward the one you love dearly. Two needy persons are of no use to each other. You will also miss out on the strange delights of care-giving.
It is tough on you because you see your suffering loved one at his worst, and will experience being on an emotional roller-coaster during the care-giving that others do not experience.
When a friend visited his dementia-afflicted mother in hospital she hurled cutlery and expletives at him. Yet he is the most filial of sons I know. She did not know what she was doing, but his hurt went beyond the pain of the assault.
Take a day off at least once a week ─ outside of the home. Each day, take breaks as office people do ─ again, out of the house. My mother had Garma, an Indonesian domestic helper as her full-time care-giver. She was the de facto nursing aide, taking care of my mother’s medications (which, if given in excess or in deficit, too early or too late, could kill─as my mother needed medications for gastric ulcer, insomnia, tension headache, arthritis, angina, and treatment for previous minor strokes). Her breaks: taking my mother to the hawker centre for lunch every day─which was good for my mother, who got her Vitamin D sunshine and the chance to greet people, and good for Garma, who got to eat her nasi padang, but who also ballooned to twice her original size. Her other breaks were taken by getting out of the flat to see her friends in nearby apartment blocks when my mother was asleep.
Whether due to being over-stretched or similar traumas, care-givers need to get out, need the support of friends.
If you are the main care-giver, go find your supporting cast. Some can help much, some a little. This is not the time to do sums on who should do more. From each his contribution, to each his choice. It’s Grace, not Karma.
For those of us who are not care-givers, go look for one and provide some assistance, remembering that nothing is too small: all the bits add up.
DD#2: Don’t contradict the dementia sufferer. Work within her logic system.
My mother wanted me to bring home the bottles of whisky and brandy atop her bedroom cupboard.
“They are very good, very rare, and cost your late father a lot of money.” I said I didn’t drink.
“People will steal them.”
“Your flat is always locked.”
“But they can come in over the wall.”
“Never saw them.”
“The robbers are very smart. You are here, they dare not come.”
Her logic was tight, though delusional. Argue on, and we both would end up angry.
“Let me think about it.”
“You are always like that, always thinking, never taking action.” She was also right.
DD#3: Don’t be tied to the past. Relate with the dementia sufferer in the here and now.
We were at the ground-floor HDB corridor. “Por Por, you look very good.”
“Thank you. You also.” My Hakka mother, at 92, had kept her vanity streak.
“Ma, who is she?” I said, after Garma pushed her wheelchair a distance.
“So why did you talk to her as if you know her?”
“She’s nice, so must be nice.”
I should have added, “Ma, you are always so good with your neighbours.”
Although US Supreme Court Associates are appointed for life, Associate Justice Sandra Day O’Conner at 75 retired in 2006, to look after her Alzheimer’s-stricken husband John. A year later she was caught in a bizarre love triangle. John, whom she had loved for 55 years, had fallen in love with another woman at the nursing home.
"Mom, you know, was thrilled that Dad was relaxed and happy and comfortable living here and wasn't complaining," her son said. "For Mom to visit when he's happy, you know, visiting with his girlfriend sitting on the porch swing holding hands, no stress on Mom. No guilt laid on Mom."
Whatever her initial feelings toward the man who no longer knew her as his wife, she showed a grace and sanity that made her decide that she was happy for him, and would allow the relationship to continue until he died in 2009.
Tomorrow Will Be Today. This instructive tagline sums up how one should live with a dementia sufferer. It belongs to essayist Floyd Skloot, who himself suffered severe memory loss and unstable balance caused by a virus.
DD#4: Don’t be afraid of mistakes. Change your approach as the dementia sufferer declines.
You will make mistakes, sometimes even repeat them. It is easy to forget the sufferer’s world is not like ours. Even though much has been discovered about dementia, every sufferer is different.
Though I am a clinically trained psychologist my knowledge was only the starting point: I needed to discover my mother’s Alzheimer’s myself. I had thought that with a dementia sufferer you would have decide everything for her, and when I was wrong, I was tempted to give up.
One danger then: We tend to do everything, or do nothing.
I had read that some stimulation would help Ma, so I arranged for her to spend half a day at an Alzheimer’s day-care centre. At the centre she smiled at the staff, but reverted to looking bored as she sat looking at people arranging plastic flowers.
“Very nice, Ma.” She said nothing. I asked her whether she would like to go back.
“Good for you to see people, and listen to music.”
“The music, so old, like chanting.” Pop icon Teresa Teng had always been her favourite but they were playing Zhou Sian from the 1950’s. I realised that what was generally prescribed for sufferers was upsetting Ma. I persisted because I presumed that dementia meant she could not decide, would not have an opinion of her own. I took over too much, too fast, too soon, when she was still in control of what she liked and detested.
DD#5: Don’t see the dementia sufferer as brain-less. Discover the still-intact brain functions.
The dementia sufferer’s brain damage is severe. We lose tens of thousands of neurons every day but nobody notices even after decades. That is because the dead brain cells are scattered. With dementia, the dead cells are in concentrated zones, and the brain function damage therein is near 100 per cent. Our flaw is to treat the sufferer as one unable to do everything linked to thinking and memory, yet to expect a normal reaction when we ask a question.
My mother sometimes took three minutes to answer a question. She answered an initial question from a nurse only after a third question had been asked.
I talked to her as she was eating popiah, hor fun and char siew, and she stared at me, “You talk so much. Let me eat.”
Her procedural functions, eating and deciding in this case, were intact. Even when she forgot my name, she never forgot I was her son. One memory function was lost forever, another intact: she instantly recognised me the moment she saw me, even after waking from a nap. Floyd Skloot explains in his memoir In the Shadow of Memory how his mother’s normal abilities masked her specific brain damages, hence delaying the diagnosis of her dementia:
“My mother knew where her clothes were, where the soap and her hosiery were; she could find and operate the elevators. She may not have remembered the names of her two dead husbands or recalled what she did ten minutes ago, but the age-related damage to her brain was in a different set of circuits than the ones that controlled her procedural memory, the ability to perform tasks.”
The retired building contractor next to my ward bed was repeatedly asked by relatives who they were, and he gave multiple wrong answers, then resigned to saying “Don’t know.” Yet, dementia notwithstanding, he bantered with the numerous visitors as if he knew all of them. He still understood the questions, and he might have some idea who his visitors were because the conversations varied with different people.
A little girl approached his bed, “Ah Kong.” He waved his granddaughter toward him, “Come nearer, sit next to Ah Kong.”
DD#6: Don’t treat the dementia sufferer as an object. Seek the ‘Self’ that manages to emerge.
The harsh reality is that eventually the one you love is no longer there, and no longer knows you are there. Memory and thinking vanish early. Physical routines are fast beyond the sufferer. But the emotional self lingers, surfacing just when you least expect. Conversation, on her terms, at her pace, are still possible. My mother told me “I love you” more times in the three years of her decline than she did in the years before that. The soul stays right to the end, whether you know it or not.
Days before she died, I prayed aloud with her, and told her to say Amen in her heart.
Minutes later, she said, “Ah-ahh-men.” Till then she had not spoken for two days.
Never go ahead of dementia’s plan, it is already fast-tracked─unstoppable and irreversible. Just follow it closely, be ready to drop a routine, even what used to work, and try out new ways.
Treatment can delay dementia’s plan, not alter it. Dementia will not change its ways, but we can. Change, the sufferer will, for the worse. Change we must, to cushion the impact of the sufferer’s decline.
Care-giving for the dementia sufferer is a road less travelled. Carer and sufferer journey unbeaten paths. The care-giver helps the sufferer decline in better shape. He is also making himself better.
It’s a walk downhill. Surprised by joy.
* Alzheimer’s disease accounts for 60 per cent of dementia, with the remaining 40 per cent caused by any of the following factors: stroke, Parkinson’s disease, Huntington’s disease, excessive alcohol and drug use, nutritional deficiency such as vitamin B12 and folate deficiency, AIDS, certain types of hydrocephalus, and a severe blow to the head.
Wong Chai Kee wrote this article from a twin perspective. He was his mother’s care-giver, as chronicled in his memoir, Even When She Forgot My Name and his wife Queenie was his care-giver, with the prayers, encouragement and support of God’ family. He passed away in Sept 2013.