Once I attended a care-giver session held in 2010 on the above subject ‘dealing with emotions involved in care-giving’. It was one of many ‘talks’ and training series organised by the Alzheimer’s Disease Association at Toa Payoh. My wife and I found it to be very fruitful and enriching that had help us initially in our difficult long journey trying to cope with the many problems that confronted us in caring my mum. In view of above it prompted me to write this article to share our experience with others..
Firstly the word ‘Alzheimers’ did not strike me, probably I have heard about it but did not know exactly what it is and I did not want to know as it was of no concern. The unexpected ‘shock’ came in the year 2001, when we brought my mother who was 83 years old to Changi General Hospital for a check-up. She was subjected first to a memory test, that involved a couple of common items used daily but she failed. Then followed by the usual ‘clock-test’ where she was told to draw her round-face wrist-watch on a blank paper provided. I was next to her and surprise to see her drawing only the dials, the long (hour) and the short (minute) hands.So her geriatric doctor winked at me to confirm as having the disease.
We were disappointed not only that we did not believe it but also could not accept the result. Our denial of the fact that it cannot be and there must be some mistake in the diagnosis. My mother has widely travelled as my step-father worked in the British Embassy and they get posted to different countries. They had been to Africa, Israel, Argentina, India, Thailand, Indonesia and Malaysia. How come she ended up like this?
However she answered some questions asked by the doctor correctly and insisted that there is nothing wrong with her. Somehow it spell out the beginning of a nightmare.
For some time we did not realise that she started to lose things, jewellery, money withdrawn from the bank could not be accounted for and finally lost her bank book and passport. On 25/01/2001 I lodged a Police Report at the Police Post claiming loss of $12,000/- in money and jewellery. At that time she was living on her own at Marine Parade as she wanted be independent and did not want to bother us. Occasionally I used to visit her and at some stage found her behaviour strange; unlike before. She got agitated easily and usually we ended up with heated arguments; at that time I did not understand anything about the Alzheimer’s disease. Here I was trying my best to reason out things but that did not seemed to work and naturally I got angry. She held her domineering role as mother and I her sibling, her slave. Her word was law and her judgment passed was final and irrevocable; no question about it. In her rage she would chase me out and slam the door behind me. It was really frustrating in my failure to resolve the problem or come to some sort of compromise.
Then followed a series of accusation of stealing, everybody stealing including my Aunty, my wife when she went to the States for holiday with my son. Even myself when I changed to 'super-bike': she told the neighbour I stole her money. Once the maid had forgotten to lock her drawer and mum found money (maid's salary); she accused her of stealing and threatened to call the Police.
She had medicine and the younger brother Leo even bought supplement like ‘ginko’ pills but after some time she stopped taking. When we saw her condition deteriorating and neglecting herself; at this point it became ‘no can do’ so we decided to step in. We got an Indonesian maid named Sunarti as my mum also spoke bahasa ‘Melayu’ besides ‘English’. My mother a Eurasian of Portuguese descend, her grandparents from Malacca spoke ‘Kristang’ a local lingo which is corrupt (rojak) a mixture of Portuguese and the local Malay language.
So the maid (care-giver) begun her long journey (6 years) of ‘ups and downs’ as according to my mother’s mood. On the lighter side my mum treated her as a daughter, taught her English, how to ‘make-up’ and believe it or not even taught her to play piano. We her siblings did not even have that privilege. On the dark side when she had gone ‘haywire’, she used to beat her and questioned her, '”Why are you staying here, you don’t have papa, mama and why must I feed you?” The favourite hours would be after midnight, the maid would called me and I rushed down to the ‘rescue’. We kept her at my place for 2-3 days before sending her back again. My mum would then receive her with open arms saying '”You know the old maid was very bad, stole my money” The maid told me that once my mum beat her with a stick and chased her downstairs to the void deck watched by an inquisitive crowd. Instead my mum would turn around and told them the opposite story that the maid beat her with the stick she was holding.
In 2003 the maid was due to return for ‘leave’ and in preparation we brought her to a Nursing Home at Katong twice; first day to introduce her to the inmates and the surroundings. On the second day we brought her clothing's for a two week’s stay. That night or rather morning around 2.00am I received an emergency call from the Nursing Home requested me to come down immediately. My mum had cause a big commotion as she was trying to scale the main gate and the nurses and even the cook had turned out to restrain her. They politely told me to take her back and that they will refund the money. Anyway the maid had to fly off so there was no alternative but to stand in as it happened all of a sudden. I had become the right choice for a substitute maid at least for the time being. I never forget that stressful two weeks endurance had been as I kept counting the days, the hour, right up to the minute for the maid’s return. However, many thanks to the fruitful talks given at the ADA sessions, help me to a better understanding, in accepting my mum’s condition, some pointers on emotions,stress management, help to identify the cause, avoid confrontation, apply softer approach, deviate her attention, change the subject did enormous help. Lastly in believing one’s faith, of ‘Divine’ help from the ‘Good Lord’ for spiritual strength to endure the hardships and rely in God and the power of prayers.
My mum’s block of flat went for up-grading and temporary they stayed with us to avoid the noise and mess in the process. When it was ready, it was like brand new; with seating toilet, floor and wall tiles. Re-wiring and relocation of power-points; so the refrigerator had different position. When she stepped in I believe she was disoriented and exclaimed '”This not my house”. It took some time to settle her in.
In 2004 my mum had a fall near her block and broke her hips; she had surgery at the Changi General Hospital and later transferred to St. Andrew’s for rehabilitation. There she was restless, un-easy yet mobile so they had to restrain by tying her up. However she was like ‘Houdini’ the famous escape artist and each time manage to undo the whatever ‘knot’ applied. So much so extra attention paid by re-locating her to the front of the ‘Nurse Station’, subject to scrutiny right under their noses. After her discharged from hospital we had to take both of them to stay with us for better supervision.
One time the maid was looking high and low for her dress which she had taken out for changing but could not find. When the maid opened the refrigerator she was shocked to see her clothes neatly rolled up and placed on the shelf
. Another time my son brought two dogs (Huskies) to my house and my mum approached and called out ‘meow! meow!. I was shocked for me it was a confirmation of her illness beyond doubt as she could not differentiate cats from dogs; it was truly sad. As for her temper it had never really subsided and on one occasion at my place she got agitated and upset. Suddenly bursting into a rage, took my new rice-cooker and smashed it to the floor. It happened so fast that we were caught by surprise and unable to intervene.
Mum and huskie dog
My mum with care-giver Sunarti at Marine Parade.
Things became worst when in 2006 I had a very serious road accident that killed my pillion-rider and I was badly maim. I had 4 surgery at the Tan Tock Seng Hospital and that I believed the accident had triggered my heart attack. At one stage at the brink of death, a priest was called to administer the 'Extreme Unction' a Catholic ritual (Last Rites) for anointing in preparation for dying. Later I went for a 'heart by-pass operation' at National University Hospital. However by the grace of God I survived and was in and out of hospital even as if not enough I was infected by the super bug called 'MRSA'. I underwent isolation and treatment at Tan Tock Seng and later transferred to St. Luke's Hospital (Christian) for re-habilitation. During this most difficult time my wife had to manage her daily affairs; at times having to drag along my reluctant mum. Many good people prayed and help with spiritual and moral support; which we are most grateful.
To-day my mum now 92 years old still able to walk short distances but usually we strapped her to a wheel-chair to prevent her from falling. One morning she awoke and started walking; her eye-sight poor and the new maid was in the kitchen (the old care-giver had gone back to get married). We were still sleeping when suddenly we heard a ‘bang’ as she had fallen and knocked herself at our door. Fortunately no serious injury sustained but it gave us an awful fright because when old people fall usually they could break a bone or two.
My mum ‘Leonie’ now 92 years old. Another problem accounted is ‘communication breakdown’ she has lost the usage of language that is to say cannot construct a proper sentence that has meaning. We cannot understand what she is trying to say; it was mumbo-jumbo sometimes in English, or Bahasa Melayu or ‘Kristang’ or better still, a mixture of all three.
We devised a schedule to regulate a pattern that is for the morning, breakfast, follow by bath, Lunch time at noon, tea-break around 3.00pm and last dinner time at 6.30pm. At night bedtime would be around 9.00pm; sometimes her day became night and the reversed. She slept during day and widely awake during night, talking to herself endlessly, sometimes laughing and even crying. Of course we try to keep her active during the day to tire her off; but sometimes the odd just happened. She has mellowed down and it is sad to see her living in her world of her own. There is nothing that we can do for a reverse. We understood that the disease is incurable and the medicine is only for slowing down the process. So the time comes for us to be realistic, in acceptance, not to blame her or ourselves and it is time to loosen up the tension and let things go.
My mum still has that aggressiveness, sometimes bursting out in temper, shouting with her hand pointing out or sawing the air. I think the display is maybe about wanting attention. I remember when we were young, she was very strict; her rules by 6.00pm we must be home for prayers. Late and she will be waiting at the doorstep armed with a cane or broom-stick or whatever to impress you what she meant.
However, we still love her by showing our concern, our compassion, by touching, gently stroking her, warmly embracing, kissing her and whispering to her ear ‘I love you’.
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