My father has dementia.
He never has a good memory for the longest time I can recall. My father will forget where he places his stuff, or even facts like where I work. But never has his forgetfulness been this frightening.
It all started two years ago. My father started asking me the same questions repeatedly, during the day. Questions like, are my children having school holidays, when are they having exams, when am I taking vacation leave, and so on.
I thought these questions were just his way of trying to engage in conversations with me, since I would see him about once a week or so.
But it wasn’t. When the questions became the same, and increase in frequency, that is not the usual.
The Starting Point
One day, when I was having dinner at my parents’ place, my father told me that he has resigned from work. He explained that he didn’t want to carry on working as he felt tired.
I asked if he had worked this out with mother. He said no, he just did it a day before. My mother didn’t even know until I told her a short while later.
15 minutes later, my father came to the kitchen announcing that he was going to work. We were all surprised. I probbed him, reminding him that he told me just that he had resigned.
My father looked confused.
I called his workplace, just to confirm that he had indeed resigned. The supervisor confirmed it, and also told me that my father had problems coping with customers’ orders. He would get the orders mixed up, and would sometimes return the wrong change to them too.
Hearing this got me worried. I decided to arrange for a medical check for him, to confirm if he is suffering from dementia.
And that was the frustrating part. To arrange for an appointment with the geriatrics clinic, I need to arrange for a dementia test. And the date is set for a few weeks down the road.
I understand dementia is not a critical condition. Yet can you imagine the anxiety of family members? Perhaps it’s just me, feeling anxious because I do not know how to handle my father.
Over the next few days, my father’s condition became more apparent. He would call me on the phone to tell me he cannot find some of his stuff, walked to my apartment to tell me what my mother wants him to do (which is not true), left the tap running and the lights on, and stuffed a lot of his things in different parts of the room.
The most frightening moment came when my father called me one evening to tell me one of his bedroom doors was locked, and that he couldn’t locate the house keys. My mother was overseas, so she couldn’t help him.
I must admit at that point that I am wondering if my life going forward is going to be focused on attending to the different issues my father would raise. What care should I provide for my father if his condition is on downtrend? My mother will be the first line of response, but she needs to work too. If this is only the start, then how bad will it be when my father’s condition degenerates further?
I didn’t even talk about my mother. Even though my mother is strong, I could also tell she is worried about the future. Would she need to stop work to look after him? Would there be safety issues?
My father finally went for the dementia test, and was referred to the geriatrics specialist. The specialist was very gentle and kind. She listened, asked probing questions, and pieced the case history into a coherent whole. She gave a second appointment, and asked me to record significant incidents during the next few months, so we can record and confirm the diagnosis.
In the meantime, the specialist advised us to establish a daily routine for my father, and to put notices and labels around the house, to help my father reinforce his memory. She also advised us to give him chores to do at home, as this will give him a sense of control and ownership.
This is crucial, as seniors who are viewed as liabilities by others tend to deteriorate much faster in condition.
To cut the long story short, my father was eventually diagnosed with dementia. I arranged for him to attend a senior activity centre nearby during the weekdays, so that he has company to interact, and his meals taken care of. He would spend the mornings and early afternoons in the centre, and will return home on his own in the evenings.
The only thing I refused is for my father to take medication. Knowing the possible side effects, and that dementia is an irreversible process, I don’t think taking medication is of any help. In fact, I believe if my father has a regular sleep cycle, balanced diet and regular interactions, he should not have any sharp decline in condition.
Moving Down the Road
Today, my father’s condition is fairly stable. The frightening episodes two years ago, when he would search high and low for things, have disappeared totally. My daughter has become a weekend caregiver to my father, bringing him out for exercise and testing his memory. Even recent memory tests showed he has improved in the results, even as we know that dementia is irreversible.
While my father is still forgetful, and throws mini-tantrums at times in the senior activity centre, he knows how to take care of himself. He helps out with housework, spends time looking at his things, and sleeps less than before. The times when he would call me has gone away.
My mother has gotten used to reminding him on his routine. She has “resumed” her nags and complaints about my father, but I know she is concerned about him and his health.
I no longer need to bring my father for any specialist appointment from next year. The specialist had reviewed his case history and suggested for step-down care in a polyclinic. This means as long as his condition does not worsen significantly, and he continues to have human interactions regularly, I don’t think he will need to see a specialist any time soon.
With one in 10 seniors above 60 years old in Singapore having dementia, this phenomenon is not going to go away anything, given the coming of age of baby boomers, and a dwindling young population. Dementia may be happening to younger people, if we are not careful to do anything to prevent it from happening.
Here is what I consider helpful in working with people with dementia:
1. Treat Dementia Patients with Respect
People with dementia are still people. They deserve the same treatment as you and I. Treat them no less. Let them have responsibility in the house. That gives them ownership and autonomy. Be patient with them, no matter how hard it may be.
2. Engage Dementia Patients Regularly
One of the things dementia patients need is mental stimulation. The reason why many seniors pass on is due to a lack of engagement, particularly seniors who live alone. If seniors who are clear in mind can suffer from loneliness, imagine what more dementia patients will lack!
Engaging dementia patients will help stimulate their mental abilities. It also allows them to have the chance to gain new experiences. When the mind is mentally challenged, the chances of dementia accelerating will decrease.
3. Form a Support Network of Caregivers
You don’t need to be alone in providing care. Enlist people around to help. If a centre specialising in dementia care is nearby, tap on it. Join any caregiver groups if you can, to render and receive support. The Alzheimer’s Disease Association is one such group to tap on for information and support.
What is the future going to be like? I have no clue, and have no idea if this situation will continue like this. I know all of us will have to rely on God’s grace, one step at a time. And in the last few years of my father’s life, I hope they will be as beautiful as the sunset we experience and feel every day.
The following resources may be helpful or useful if you want to know more about dementia, also known as Alzheimer’s Disease:
- Centre for Geriatric Medicine, Tan Tock Seng Hospital: for information on geriatric services for seniors, including care for dementia
- Alzheimer’s Disease Association, Singapore: for information on dementia, with helpful articles on handling dementia, training and information sessions
- Mayo Clinic: overview of dementia, including care services in Mayo Clinic
Do you have a similar story to share? Feel free to share if you have any. We should support one another as caregivers for dementia patients.