One step forward, two steps back.

I spoke too soon. Just a few hours after Friday prayer yesterday, Mummy had an anger episode that included violence towards Papa.

Her OCD fixation has now turned to going out. She constantly wants to go out, go for walks, go for drives. In 108 degree weather, this isn’t the wisest choice for obvious reasons. When you tell her that it’s too hot to go out, not now, we’re tired/relaxing, you haven’t eaten yet, it’s prayer time (as you can see, we’ve tried every excuse in the book), she gets angry, and resorts to violent actions and/or speech. Mainly, her anger is directed towards Papa and Anis.

Then again, last night at around 11 pm, she wanted to go out, and got angry and agitated at Anis for not taking her. Same thing happened today. She has been mentioning going out all day today, and finally burst into anger at Anis and Papa. Her anger hasn’t been directed towards me just as yet, but that’s probably just a matter of time.

Anis explained to her that she cannot raise her hand on anyone, or threaten to hit anyone, or say bad things to anyone. He gently explained that these are bad actions, and shouldn’t be done. Mummy geniunely didn’t understand why. She asked, “Why? So what? Why can’t I?”

Then again Anis would explain that she shouldn’t hit anyone or say she was going to hit anyone. Then Mummy would completely forget what she did/said, and would get confused.

“When did I say I would hit anyone?” she asked. She would have no recollection.

This is not good. It is worrisome for us because we’ve seen how far her anger would go, to the point where she refused to eat, refused to take medication, and refused to do anything at all. It makes it a hundred times more difficult to manage and take care of her when she is in this state.

Not only that, when she goes through anger and violent phases, it takes a huge, huge, HUGE toll on everyone in the house, because we have to exert all our effort and energy, both mentally and physically if she gets violent,  to calm her down and control her anger.

The household mood changes. Instead of being at ease because of all the great progress she has made, we are now weary of the old symptoms that are appearing to resurface. OCD, anger, violence….We thought we had crossed this hurdle a long time ago, and were slowly going forward. Now it seems, it’s all going in reverse.

Another thing about dementia is that you just don’t know what to expect. It’s not like diabetes where if you eat sugar-y stuff, you expect your sugar level to go high. If you take too much insulin, you expect your sugar level to go low. It’s not like that. There is a cloud of uncertainty looming over constantly. One minute the patient is fine, the next minute you’re standing there scratching your head, wondering, “How did we get here? Just yesterday she was fine! What happened?”

It’s one of the hardest things about this disease. From a caregiver’s/relative’s perspective, you feel like your reflexes have to be ready for any curve balls that fly your way. You have to constantly expect the worst, no matter how controlled you think you have this disease.

You can’t get too comfortable knowing that she’s taken a step forward, because you have to prepare for the two steps she will take back.

It is a learning process. A process that doesn’t have a manual or a how-to guide. It is a process, unfortunately, that we have to learn the hard way.

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