If you are looking for a scientific medicine, then that’s not it. Let me tell you about my Alzheimer family.
My grandma had Alzheimer and Dementia at the age of 80. My mother had it at 65. Who knows, may be my great grandma also had it, but I’m not aware of it. So I know a thing or two about Alzheimer and Dementia. I wanted to write this as I’m forgetting many things too.
So for people who doesn’t know the difference, Alzheimer is you forget where you last put your underwear, and Dementia is you think your daughter/son in-laws stole it. Simple as that. Crazy as it sounds, that’s exactly happened with both of them. If you get Alzheimer, you’ll eventually get Dementia, as that’s how the disease progresses. However, you can get Dementia first as well. I was never bothered with these names, until it hit my Amma – that’s how I called her [that’s the Tamil word for ‘mother’].
I was living with both of my parents in Canada. Then my father passed away, when a 2nd heart attack hit him. Amma was 63 at that time. From then on, my Amma started to ‘behave’ differently. It was only me & Amma in one apartment. My 2nd brother family lived in the same building. She would complain her daughter in law [Kutty] stole something. It’s your mom telling this. So naturally, you believe her. These are things that are believable too. She said, her dried fish is stolen when she gave it to Kutty for it to keep in fridge. One day, there was a big fight between my Amma and Kutty. She said, Kutty stole her cutlery. I was perplexed as whose side should I take. So I also believed that may be she took it and forgot to return back. It’s normal.
Eventually, I started to notice that mother will forget to off the stove. She burned the pots a few times. She would ask me what else I need to put for Tea. Her cooking started to taste not so great. She is an incredible cook, by the way. If you don’t believe me, ask all the daughter in laws. I thought, she is getting old and so she is ‘forgetting’ – its old age problem.
I have four brothers and all married before me. When I said, I should take Amma to Dr., they were so against it. She doesn’t live with them. So they do not understand. I’m the one seeing the problem first hand. After putting it off, one day I talked about her memory issues to her family Dr. Doctor simply brushed it off as its nothing, probably old age memory loss. Doctor suggested to take multi-vitamins, which Amma was already taking regularly. Then I sent her alone to Malaysia – as I thought that would give her a change – to see her brother and sisters. By the way, she was born and grew up in Malaysia; married in Sri Lanka; immigrated to Canada. It was then her sisters told me my Amma is also showing signs of what my grandma had – Alzheimer and Dementia. After she came back from Malaysia, I took her to family Dr and insisted we need to see a specialist. It was then we saw a specialist and he asked her to do few simple tests – write down your address, phone, date of birth, etc. She didn’t write any of them completely right. But I was aware that my mom don’t remember many things even when I was a teenager. We would go to grocery shopping in Dehiwala [in Colombo, Sri Lanka] from Mount Lavania and she wouldn’t know which way to turn back home – left direction bus or right direction bus. One of those tests was to draw the clock – yes that’s the famous tests for all Alzheimer patients. I was surprised she didn’t know how to draw the clock – as I know she was helping me study when I was a kid. That was a shocker for me. The Dr said no cure, we can slow progress of the disease. He said, this could have started may be because she had a stroke earlier – mild one that she didn’t realize. So I believed him – naturally. This was at her age of 65. He said, it was ‘normal’ to get Alzheimer for 65 or older in Canada. My believe was it was a disease that started recently. I believed, the disease is mild as forgetting things and telling my stuff is lost. I never knew it can get even worse than that. He never said, it will get more like a living hell.
Dr gave me the pills to give it to her, and she would ask me “Why do I need to put these pills?”, “I’m OK; I’m not mental”. At this stage, she was aware of the surroundings and yet sometimes she would behave differently. So its harder to convince her without breaking her heart. So I would lie like, this pill will make you remember better.
After I got married, she started to fight with my wife. Again, I thought it was the normal mother/daughter in law fights. The fights eventually would make no sense. Amma would say, my wife took her diary; pencil; pen; cordless phone – stuff like that. My brother who lives in the same building would negotiate between us. He would eventually make me & my wife to say ‘sorry’ to Amma and promise not to ‘steal’ her stuff again. I eventually agreed to whatever she said and tried to do whatever she wanted me to do – like searching for her pencil in entire house, even though there are 5 pencils outside. She was very adamant, she only wanted a particlular pencil. Amma doesn’t like me & my wife going out alone. Yes, Amma wanted only me & her to go grocery shopping; to the mall; even just walking on the sidewalk. Of course, my wife gets furious. Amma would say my wife and her mother stole her bra. No matter how I tried to explain she will get angry at me for ‘colluding’ with them. Finally I would say, yes they stole it, and here I took it back from them.
Not a single day pass by without me wishing, at least freeze the disease at this stage – if the medicine can do this, I can take care of her. Day by day, it got worse. Initially, if she gets upset, she would come back to normal after few hours. It became longer as the stage of the disease progresses – from hours to days; from normal days and one once in a while fight to once in a while normal days. She got loss in the mall even though my brother family was with her in the same store. She fought with me one day and simply walked out of the house and got lost. I had to drive around to find her. She will forget her sons’ name and switch around; couldn’t tell who is older; and say she has 10 sons [later that became 100]. At the age of 69, it was impossible for us to leave her alone at home. We couldn’t ask her to look after our toddler until we do small errands, as she would move away forgetting she had this responsibility. She would say I ate, but in fact, she forgot that she didn’t even eat. She would talk to herself; believe the dramas on TV is real and ask me to send money to those families. She would stare at the TV for whole day. She would go to toilet and will not wash or wipe; put her dress back up and come out. She would take bath without putting the soap as she thinks she did it already. At some point, I had to put her the bra and underwear. Daily activities became a challenging task for her and myself. My life became miserable, disappointed, frustrated, angry [all the emotions you can add in here] and desperate to manage work, wife, small kids, and Amma. Later on I heard, similar Alzheimer patients would undress in front of others. Luckily that didn’t happen. The problem is not only between us and Amma. It became with outsiders too. People have no clue of how stressful of looking after her, complained the way I was looking after. I wish they had taken care of her for more than 6 months. Any other disease is bad for the patient, it is this disease will take a toll on the caregivers.
Long story short, Eventually, she got stroke – this is the next stage of Alzheimer and Dementia. The brain nerves and cells died and became brittle and now they are starting to break down – leaving her half paralyzed. She died of it after one month in one of my brother’s house.
People say, she was a house wife, and that’s why she got this disease. She should have went to work. She should have kept her brain active. Well, I refuse all of this.