My father has always been an independent person. He was taking care of himself and my mother and was still working in his 70s. However, he decided to stop working at about 75 as his vision was not so good. But he could still drive my mother around the neighbourhood for errands and meals.
However, about two years after he stopped working, my sister noticed that he was becoming forgetful and would misplace things like his car keys. Once, I received a call from my dad saying that he had driven to the petrol station but couldn't remember how to get home. Luckily, I was nearby and was able to rush to his location and ask him to follow my car as I slowly drove back to his house.
That was when I knew that my dad’s memory loss was not within the normal ageing process. I took him to see a geriatrician who diagnosed him with early stage Alzheimer's.
However, things took a bad turn about a year ago. When my sister arrived at their house to take them out for dinner, my dad was watching TV while my mum was lying on the kitchen floor. Mum was slipping in and out of consciousness. My sister asked dad what had happened, and he replied, “Don’t know... she said she's tired and wanted to sleep on the floor.”
To cut a long story short, my mother suffered a stroke and had to undergo emergency surgery. I rushed to Penang and when I arrived at my dad’s house, I asked him the next morning what had happened but he could not remember a single thing. He kept asking where's my mother and where's his breakfast.
My mum survived the surgery, and my sister and I took my dad to visit her. We explained to him what had happened. When my dad saw my mum lying on the hospital bed, he began to scold her and ask why she was so lazy, sleeping in the afternoon and asked her to quickly wake up and go home to prepare his lunch. It was obvious that he could not understand what had happened to my mum. Unfortunately, she passed away about a week later.
Today, my dad still lives on his own. He is capable of performing certain chores, such as washing his own clothes and boiling water, and cleaning himself. However, he cannot remember that my mother has passed away and every day he calls me or my sister to ask where she is.
It is quite clear that he should not be living alone. He had refused to live with me when he was still rationale and now, at this stage, it would be even more difficult to convince him to stay with me. As I am based in a different state, it is not possible for me to change jobs to stay with him.
My sister also cannot stay with him as her husband would not agree. The husband already does not mind visiting dad almost every weekend and even drops by with my sister on weekdays to check on my dad.
We have been thinking of sending our dad to a home that accepts Alzheimer's patients. I think some of these homes could be suitable as there are other patients whom my dad could mingle with instead of being home alone every day. There are also caregivers, in case of any emergency. But this would mean that my dad would be in a totally new environment. My sister and I are very worried about how he would adapt.
I have asked the geriatrician and his response was that ideally, the Alzheimer's patient is in a familiar environment.
I urge you to waste no time putting together a plan that weighs your father's needs with a view to practical limitations such as your budget, the availability of qualified caretakers, and whether homes are currently able to take in new residents.
Start by getting in touch with the Alzheimer's Disease Foundation Malaysia (adfm.org.my/ tel: 03-7931 5850). They are an NGO based in Petaling Jaya, Selangor, who provide basic advice to sufferers and their families. They also have lists of locally based professionals from specialist carers to homes.
When you have a better idea of what exactly will be involved, begin outlining a plan of action.
I suggest you begin this by remembering a basic piece of common sense: your father's condition is progressing, which means that his needs this week will not be the same as his needs next year. Therefore, you don't need to figure it all out instantly. Do what needs to be done now, then take a breather and plan for the other stages.
For example, you may be able to hire a specialist caretaker for a few hours a day and a helper for the rest of the day for now. Cameras in his home will help you maintain a close eye on him. Then, as his condition advances, you might switch to hiring more specialist care, take him into your home with the help of carers, or make arrangements with a home that is geared to care for residents with Alzheimer's.
When you look over your options, be certain to budget appropriately. As costs can become eye-watering, some options may just not be available to you.
Talk to the ADFM to get their input on your plans. Also talk to a lawyer to plan for what happens when your father becomes incapacitated.
With all of this, you should know that families looking after relatives with dementia often become very stressed. In severe cases, this turns into caregiver burnout. It is a natural consequence of being over-stressed by an increasingly difficult situation that cannot be alleviated.
Circle your support group, people who can be trusted to offer loving help. If you just want to vent to a friendly person who won't judge, call the Befrienders at 03-7627 2929. If you find you need help for depression, speak to a mental health practitioner.
Do hesitate before sharing on social media. Unfortunately, the second people hear of a case like this, you'll be over-run by "guaranteed cures", attempts to rob his home, and other scams. Also, there's the lunatic fringe who enjoy sitting back and passing nasty judgement on helpless victims.
I'm so sorry that this is happening to your poor father. I hope this helps you plan for his and your best comfort.
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