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Know Dementia, Know Alzheimer’s: It Does Not Have To Be A Burden You Take On Alone

dementia

Know Dementia, Know Alzheimer’s. I grew up in a humble and middle-income family. I remember my dad having to do 3-4 jobs to put us through college whilst my mom stayed home to take care of the 3 of us. It was warm, loving, and fun, except for the small instances when my mom used to scold me for not understanding mathematics.

Thinking back to all the things my parents gave us, I cannot help but feel this incredible sense of gratefulness watching them age gracefully with both being able, active, and healthy in their 70s. 

Even then, when I look at my circle of friends, it breaks my heart to see that not everyone is as lucky as I am. One friend has a parent who suffers from dementia, and I see the toll a condition like that takes on a person and the people around them. Fine lines crop along their face and the burden of stress inadvertently shows.

I cannot imagine what my friends go through when their parent calls them the most atrocious names and do not even flinch. I have heard stories of how they almost got their head slammed into a wall by their parent who did not recognize them.

I cannot even imagine my parent calling me anything remotely mean, let alone not remembering it or even remembering me for that matter.

Sadly, these instances are a lot more common than one might think for an elderly who suffers from the later stages of dementia. 

Dementia is not a normal part of aging. It is caused by damage to the brain cells that affects a person’s ability to communicate, which can affect thinking, behavior, and feelings hence the outburst that sometimes happens.

A lot of times, people mistake dementia and Alzheimer’s to be the same thing. Both are similar but they are not the same. Alzheimer’s is a degenerative brain disease. A common early-onset symptom of Alzheimer’s is trouble remembering new information because the disease typically impacts the part of the brain associated with learning.

Dementia is an umbrella term for a decline in mental ability severe enough to interfere with daily life. Alzheimer’s is the most common cause of dementia. Alzheimer’s is a specific condition. Dementia is not.

It is important to understand the difference between the two to be able to reach out or provide them with the care that they will need. I would not even be able to begin to fathom what the elderly would feel as they start to realize what is happening to them. From being lucid, everyday people who actively participate in life to someone who finds it difficult to grasp that their memory is deteriorating and worse, have difficulty distinguishing reality from hallucination.

It truly breaks my heart. And that is not where the impact of the disease ends. To the family, managing this disease can be tiresome and incredibly painful especially if the elderly needs close monitoring. Could you imagine watching a parent whom you looked up to and relied on all your life, who raised you, slowly start to disappear right before your own eyes? It is not easy and hard does not even begin to describe the reality of the situation.

So how can we help?

In Homage, we care for many elderly people who suffer from dementia and Alzheimer’s disease. Reading the visit reports by our professionals is difficult – each report holds so much emotion and concern. It talks about how atuk thinks he is still at war and often needs to hide to protect himself. Another one says that popo insists on going to the bus stop opposite the house at 4 pm each time because she needs to pick up her grandson from school, despite her grandson now being 25 years old and studying in the US.

What do we do as family members, as people trying to root them and help increase their quality of life? Do we convince them that this was 50 years ago, or do we follow their schedule? Do we walk or hide or run alongside them? These are all the questions that crop up when thinking about the disease. 

What I have come to realize is, that to navigate through these hurdles, one would need a lot of patience, effort, mental space, and most importantly help. 

There is a stigma within the Asian community mostly, that a child MUST take care of their parent when they grow older and should not ask for help. Your parents raised you on their own so you must take care of them the same way too. But this is not the case. There is no shame in asking for help. Even Batman had Robin; elder care does not have to be a burden you take on alone.

Caregiving is a joint effort between the providers and the family. When you need a break, you take that break, and we can step in to help. Mental health and self-care are quite widely talked about these days, and it is important. For a child to be able to manage their own emotions by convincing themselves that the name calling by their parent was not personal and at the same time juggling the physical care of the parent is not only stressful but draining. 

The number of times I have heard families say they feel guilty for wanting to give up that weighs on their shoulders is much more than I care to mention. However, I always say that asking for help does not mean you are not good enough or that they are being too difficult, and that you are running away from your responsibilities. It’s because circumstances have made it so and it is nobody’s fault.

Knowledge Is Power – knowing does not only mean getting the information about the disease itself but also being empowered with the options out there available to help you as a caregiver to cope and provide solutions. 

Hence, to me, this year’s theme ‘Know Dementia, Know Alzheimer’s is beyond simply identifying the symptoms and early detection of the disease but also learning how to cope with it at the different stages. For a child. To a beloved parent. Without losing the bond and love that they once had for each other. 

PC Gan, Country Manager at Homage Malaysia

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