Dementia is an irreversible and progressive intellectual disability affecting key functions of daily life and caused by a groups of disease processes… Alzheimer’s disease accounts for two -thirds of cases, and is the best known. (Rosemary Hurtley, Insight into Dementia, [Waverley Abbey House: Surrey, England, 2010], 15).
“Honor your father and mother”—which is the first commandment with a promise— “so that it may go well with you and that you may enjoy long life on the earth.” (Ephesians 6: 2-3 NIV)
The most important lessons in life, I have learnt the hard way, and I have learnt slowly. Like my mother’s journey into dementia. It began with things like her insisting that I was taking a wrong road to a place we were going when I knew I was on the right road. Mum and I have strong personalities and we have had many clashes through the years. I saw this as another clash of wills and I responded with irritation, the famous Soo Inn temper. I recount this with deep sadness and wish I knew then what I know now. (This could very well be the motto of my life.) Other peculiar behaviour followed. She would keep losing her keys. She would hide things. She accused people of stealing her stuff. I recall all this with shame and frustration. I should have seen it for what it was — the onset of Alzheimer’s. I should have responded to my mum with more kindness and understanding but did not. I know better now and am trying to do better.
In a recent article in Newsweek, Abigail Jones writes about actor Seth Rogen testifying before a U. S. Senate committee on Alzheimer’s.
In 2006, his (Rogen’s) mother-in-law was diagnosed with early-onset Alzheimer’s at 55. At first, he thought this meant a future of lost keys and mismatched shoes. A few years later, the family faced “the real ugly truth of the disease,” Rogen testified. “After forgetting who she and her loved ones were, my mother-in-law, a teacher for 35 years, then forgot how to speak, feed herself, dress herself and go to the bathroom herself — all by the age of 60.”
At estimated 5.2 million Americans have Alzheimer’s, and there is no treatment that prevents, slow, stops, or reverses it. If doctors don’t find a cure, the future is grim: By 2025, the number of people aged 65 and older with Alzheimer’s is expected to grow by 40 percent, to 7.1 million Americans … (Abigail Jones, “Our Lost Generation,” Newsweek, April 4th, 2014, 39.)
Mum is 86 and much, much better by comparison. She complains about backache, has horrendous short-term memory, is slowly withdrawing from engagement with life, but her symptoms are nowhere near the symptoms of Rogen’s mother-in-law.
In her helpful booklet, Insight Into Dementia, Rosemary Hurtley tells us some things to bear in mind when caring for those with dementia. They include:
• The person’s attention span will be short.
• Involve people in decisions using pictures and simple sentences . . .
• Provide a stimulating environment, using preferences and unexpected spontaneous ‘happenings.’
• Emphasise the use of non-verbal communication such as gesture, matching their emotions, using touch, music.
• Everyday activities can be therapeutic even for as short a time as thirty seconds.)
• Consider the need for relaxation, light massage, music and singing.
• Try not to focus on the end result but on the process of ‘doing’ so that it is failure free. Give simple instructions. Employ good communication using short ‘key words; start off an activity with the person, or do it with them to remind them.
• Enjoy old photographs, objects of significance and, in later stages, explore different textures to feel and touch, closely monitoring the level of pleasure or anxiety when trying something new.
(Insight into Dementia, [Waverley Abbey House: Surrey, England, 2010], 62 – 63.)
Because of her need to be in a familiar environment, mum refuses to move down to Singapore, which is fully understandable. And I believe that I am to be based in Singapore for this chapter of my life. I try to see mum at least once a month and if I can’t be there, darling Bernice will go. (It won’t surprise you that Bernice does a much better job of caring for her.) And there are times when we both go which is best because when one of us is there she is always concerned as to why the other person did not come as well. This commitment is costly in terms of time, energy and money but I wish I could do more.
I have learnt to be grateful for mum’s situation. She still remembers who she is. She remembers she did significant work as a lecturer in the Day Training College, and as a leader in her church, the Penang Baptist Church, though she grieves that she no longer has key positions of authority. She knows her immediate family and closest friends. She remembers her church. She enjoys outings to eat her favourite foods, which include kuay teow soup (Hutton Lane) and beef noodles (Weld Quay). She is especially happy when her children and grandchildren visit and asks about them all the time. And mum remembers her God. She says she is waiting for her number to be called so that she can go home to God. (The doctors say she has many good years left.) She can still play hymns on the piano.
Indeed she looked very well during my last visit, emotionally and physically better than she has been for a while. Is it the meds? It is definitely God and I am grateful.
Mum tells me regularly that she has only one son and she wishes he were living in Penang or at least visits more often. Her love for her son is real and palpable. I am sometimes embarrassed but I am grateful. My next trip back happens to be on Holy Week, a good time to remember sacrificial love. I feel sad when I remember who she was but I am learning to thank God for who she is now, and grateful that I still have the opportunity to be with her. See you soon mum.