Wednesday, January 10, 2007

Living with STML (Short Term Memory Loss)

According to the Alzheimer's Association,“Alzheimer’s (AHLZ-high-merz) disease is a progressive brain disorder that gradually destroys a person's memory and ability to learn, reason, make judgments, communicate and carry out daily activities. As Alzheimer’s progresses, individuals may also experience changes in personality and behavior, such as anxiety, suspiciousness or agitation, as well as delusions or hallucinations.
Although there is currently no cure for Alzheimer’s, new treatments are on the horizon as a result of accelerating insight into the biology of the disease. Research has also shown that effective care and support can improve quality of life for individuals and their caregivers over the course of the disease from diagnosis to the end of life.”

I know Alzheimer’s from what I see on television and the movies but I never really knew anyone afflicted by the disease until recently when my husband’s family decided to make us the caretaker of their ancestral house and designated us as housemates of his two spinster aunts – one with a hearing problem, the other with Alzheimer’s.

So, how is life living with them? Have you seen the movie Fifty First Dates? Where Drew Barrymore forgets everything from her immediate past each time she wakes up to a new morning? Alzheimer’s is a lot worse than that. For Twako, it takes only 10 seconds or so, after which she tends to forget about what she has just said.

The Door
We have this second floor balcony where, on rare occasions, we entertain guests. Usually we keep it open when we are around to allow air to move freely inside the house. When everybody else is ready to settle down for the night, Twako would sit at this bench where the balcony door is within view and ask if it has already been bolted (grills plus the door itself). She will ask Diko about it, to which she will say not yet.
Then she will proceed to telling her to go close the door. Overhearing this from our room, Miki would shout that he will be the one to close the door. Twako will then nod and say that she is just concerned that we might forget to close the door and someone might break in during the night. Pause…. For about 10 seconds or so. If nothing or no one will catch her attention, she will proceed with asking the same question and give out the same reason. The Q and A will stop if we give in to closing the door or we distract her with something else.

Last night, while she was into her usual asking, Miki and I got the surprise of our lives. Boz stood up and yelled our usual reply for us! Silly kid!

A Case of LBM (reader discretion is advised)
There was this one time when she ate corn on the cob during merienda that sent her complaining about having a heavy stomach. She tried a few times to go to the toilet but to no avail. Later in the middle of the night, she might have gone to the toilet and give in to the call if nature. I woke up to a dirty toilet bowl (unflushed because she can’t carry a pail and the flush wasn’t working). She never knew what happened to her when she woke up. So Miki suggested that we just don’t talk about it with her as she might feel humiliated by it.

Happy Moments
Last December, some relatives from Victorias came by to visit her. She’s lived with them for almost 40 years and she’s been like family to them already. They were having a family reunion and the children were coming home from places. One of the kids, now a doctor, who is also a godson of Twako, wanted to visit her so they came by the house early one morning. She cried a bit when she saw him (after some introduction and explaining who he was). She was deeply touched by his gesture. They took her and Diko out for lunch that day and took the afternoon boat ride back to Bacolod. That night, when we asked her where they had lunch, she was quick to say, here! Where else? She just had no recollection of what happened earlier in the day.

There was also this one time when my son’s nanny attended Saturday school and I was left at home with them and Boz. Saturdays are cleaning days so I kept myself busy unearthing treasures from the cabinets. While doing so, my son was all over the sala, climbing the grill doors, jumping in the sofa, lying on the floor, running back and forth. The whole time, Twako was shouting words of caution and don’ts for the fear that Boz might meet an accident. Boz become impatient at times that he would raise a hand and attempt to slap Twako’s hand or push her. Then there I was running towards them preventing a physical encounter! Then Twako would just say, it’s okay, that’s how children are.
Then they would proceed to playing and talking about his cars again. What happens next, well, the same as above!

One night, Miki went out with his high school friends. He told me to wait for him in case he comes home late. When Twako knew about this, she stationed herself near the window, overlooking the activities outside the house. A few seconds or so, she asked what time Miki will was coming home, did he bring the car? Who was he with? When I told her that Miki would be back at 2am, she would gasp and ask why that late? Did he bring the car? Are his friends Chinese? Maybe they still had to bring some of their friends home… The Q and A would again proceed after every few seconds. She never slept until Miki arrived. Miki then told me that I should have told her that he was sleeping at Mapa (Miki’s parents’ residence). That’s what he did when I attended our Christmas Party at work. I should have known!

Miki went out again last night and we told Twako that he was sleeping at Mapa. It worked! By 9:30pm, she was already in their room. Miki arrived at around 12midnight. I heard them stir in their room. But the issue was unheard of in the morning.

Hurt Feelings
If there is anything that lingers in Twako’s short-term memory, it’s feeling of shame, anger and hurts. Funny how a disease can make rob you of positive emotions and leave you with lingering memories of sad events. There is this one time when we were awaken by loud voices coming from the toilet. Twako was already shouting because she felt helpless. She just wanted to know which one was her toothbrush. Perhaps Diko wasn’t able to show it to her (or maybe, she didn’t hear her when she asked). So she just guessed which one was hers from the toothbrushes hanging on the rack. Unfortunately, she picked Diko’s. Diko scolded her and spurred a heated discussion. Twako was angry that Diko was angry. She felt that Diko shouldn’t because it was not her fault that she didn’t know which one was her toothbrush because she cannot remember. She then proceeded with self-pity remarks about her situation.

After a while, they both were quiet. They both sat in opposite corners of the second floor receiving area, not talking to each other. I invited them both to go down for breakfast. And that is where I learned about their heated argument. Twako told me she can’t have breakfast yet as she hasn’t brushed and wiped her face because she didn’t know which one of the toothbrushes and the face towels were hers. And so I went to the toilet with her, identified her brush and towel and left only after she has finished freshening up. Diko followed suit.

There was still no talking during breakfast and so Miki asked Boz to amuse the old. My son’s charms worked wonders! But it would have to be a while before they start talking again. Around 3 to 4 hours. Nothing untoward happened after that incident but I was told that in more extreme cases, she would have palpitations after an argument that they had to give her medication to prevent incidence of cardiac arrest or stroke.

Night Ghost
I will never forget our first night in the old new house. It was quite hot that night and so we kept the door in our room open. Boz woke up and cried at around 3am to ask for his usual milk ration. I stood up made him his milk and went back to sleep. A little later, I heard Miki gasp after seeing a figure hovering just outside our screen door. He thought he had seen a ghost! Turns out it was just Twako worried that she heard a baby cry. We told her it was just Boz asking for his milk. She said she thought something wrong was happening to the baby. It was a while before she went back to her room.

A few nights later, Miki was no longer surprised when a figure hovers at our door when Boz cries from a nightmare or just for a bottle of milk. It would just be Twako. Does she ever sleep at night? I doubt!

Patience Now!
Everybody’s patience is tested. Boz Nanny, the impatient that she is couldn’t stand watching TV with Twako and be interrogated about the door not being closed, or where she was sleeping or where is Boz. I get impatient too explaining that Boz is already big enough and that she doesn’t have to reprimand him as he might lay a hand on her. It is a challenge! The price that we have to pay for the privacy of a shared home.
But I still love her. I haven’t lived with my lola so I can’t really say I know her as well as Twako. If there is anything that I love about Twako is that even in her disease, you can see her good nature, her genuine concern for people, her generosity and her soft spot for children. She may be living in a short-term memory world but her character grows strong. She can love, appreciate, show concern and affection for people around her. She may be redundant but that’s just because of the disease. She’s still a beautiful person for me.

My prayer
There’s really no telling how her disease will progress. When the hallucinations will come or dementia or whatever. And so I pray for patience. That I may not forget how beautiful she is and how life has been difficult for her. I pray for courage that I may fight off the urge to be angry or impatient. I pray for understanding and guidance and realization things as such can happen to anyone else close to me.
I also ask you to pray for me and my family that we may see past Twako’s disease and make her enjoy the remaining days of her life.

Life is short… but only for some. For those who live past their prime, may you not take the path of my aunt-in-law. But if you do, pray that you savor the best of what life has to offer!

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