Living with Alzheimer’s 15 (a series)

Mental Health

When the Philippines was hit by Covid-19 and our president declared the National Capital Region to go on Community Quarantine, I was not worried. I knew that it would only be temporary and that the quarantine would be lifted as soon as it was deemed safe. I actually thought I could use the time to catch up on sleep, on work backlog, on cleaning, on learning new recipes, on writing, on gardening, etc.

But then we had to let go of our caregiver because circumstancial evidence kept pointing at her squirreling our food away. And all my plans disappeared in a puff of smoke.

But why did it have to be me? I never wanted to be the “favorite”, nor did I seek attention (on the contrary, I always hid when called to play the piano for guests), neither do I enjoy announcing my movements at every turn. It particularly irks me when her questions break my line of thought and I have to go back and rethink everything again. Or maybe I should just stop thinking?

In the last month and a half, my mom’s condition has worsened in terms of:

1. Cycle period – sometimes she repeats the first question just as soon as the last question has been answered;

2. Inability to sleep – she sleeps for about 5-10 minutes and when she wakes up, she thinks it’s been a long time already;

3. No sense of time passing – she asks for food every half hour or so, more often forgetting that she had just eaten

Of course, there are times when I believe the memory vitamins are helping:

A. She remembers more life episodes in her dreams such as get-togethers with her children and grandchildren, parties she used to host in our previous residence, friends she had long forgotten, her passion for folk dancing, her father who cheated on her mother with three other women..

B. Her strength has returned, allowing her to walk the halls of our house repeatedly and without tiring, looking for me, my husband and my siblings..

C. She has not forgotten some daily habits such as changing her panty every night before going to bed and hand-combing her hair before getting out of bed..

Since we are under General Community Quarantine and flights in and out of and around the country have been stopped to stem the transmission of the virus, I have no choice but to bear it all. I just hope that the light at the end of the tunnel brings relief in a way that I will have peace of mind without feeings of guilt or regret.

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Living with Alzheimer’s 14 (a series)

Mama is not so well.

  1. She is hard of hearing, and that when she hears a familiar word (or sounds like), she will ask about it after a few minutes pa, so by that time, I will have no idea what she’s referring to.

Her most familiar word is “airport”. So whenever the speakers on tv mention the words “airport”, “effort”, “seaport”, “and so”, and whatever other words that rhymes with it, or Ed and I talk about tourism plans, she will ask:

Who is arriving at the airport?

  1. She cannot follow conversations, topics, trains of thought anymore. Yesterday, we had the same cycle of questions repeatedly (around 6 or 7 times):

Where is N? Australia
Who is she with? V and her children
When did they go there? 1991
Why did they choose to go there? Because of work and the children’s education is free.
Where is N? …

… and the cycle repeats

  1. She doesn’t eat well. Because she doesn’t wear dentures, she cannot chew her food anymore, so we make osterized lugaw (porridge) for her. Still she refuses to eat the whole bowl (only half or sometimes just a few spoonfuls).
  2. She doesn’t sleep well, waking up at 2am or 3am, asking for breakfast. When we give her snacks instead she refuses or eats a little and again insists we make her breakfast. But when we give her lugaw, she won’t eat it all. On the other hand, she does eat her snacks with gusto when it is snack time.

My greatest concern right now is to keep Mama out of a hospital. I do not want to care for her in a hospital now with the Coronavirus still around.

Added after original post: How can she remember some things like dreams/memories she sees in dreams but not where her children are currently living right now?

I am going crazy right now.

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Life in the Time of Covid-19

Since the beginning of this year, I have been fighting off cold symptoms, which usually hit around New Year’s Day. Mind you, I have not been sick, but with the onset of this #Covid19, I have been worried that I may be more vulnerable to catch it, given that my body is somewhat weakened already. This is the main reason why my husband is the designated shopper/outgoer during these strange times.

So I have actually been on self quarantine since March 1, much longer than the ordered sequestration. So far, my symptoms have not shown, but everyday, I can feel myself losing the battle, little by little.

There are many remedies and home treatments flying around the internet, some of which I know work — like gargling lukewarm water with salt — and some are just crazy — like holding your breath to make sure the virus doesn’t get past your throat.

This was posted just recently:

It mentions salt and hot water again. And though I’ve been gargling, I find it tedious and uncomfortable on the neck. Maybe this will work. Or else why would a doctor recommend it?

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Living with Alzheimer’s 13 (a series)

Happy Easter, Mama Diaries Fans!

Mama’s Daily Schedule:

5:00am – Mama starts waking up G and E, demanding breakfast

6:00am – E gets up and prepares Mama’s breakfast (lugaw)

7:00am – Mama is still eating breakfast reluctantly and lamenting that she wants to sleep. G administers her meds.

  • after, Mama sleeps for about 10 minutes
  • intermittently, after 8-10 minutes sleep, Mama asks these same questions over and over again:

“Where are we? Where is G/E? Where is N? T? B? J? Are they coming home? Who is coming?”

9:00am – Mama starts demanding lunch. We usually give her cake/cookies/snacks to tide her over. Her demands are timed at 30-minute intervals.

11-11:30am – We have lunch. Mama feeds herself, but after 3-4 spoonfuls, she wants to “go to bed,” so we end up feeding her the rest or else she will stand up and go.

1:30pm – Mama starts demanding dinner, asking first, “Who’s in the kitchen?” then to G, “Ikaw na sa kusina ha? (You be in the kitchen, okay?)”

The same cycle is repeated throughout the afternoon. That’s about 5 hours. With snacks every half hour. Sometimes, while munching on her snack, she will ask what’s for dinner.

6-6:30pm – We have dinner. Then, while E and G are washing up, Mama will “wait” for us, all the while lamenting that she wants to sleep already. The reason why she doesn’t just go and do it, is because she doesn’t want to sleep alone. The weird thing is, even if one of us joins her, she will still “wait” for — and even fetch — the other one to come as well. And then asks where the others are just the same.

So this is our daily routine. I used to complain that I didn’t want this job. That if someone could take my place, I would happily relinquish my position as carer. However, nobody could come and take my place because of work and personal obligations.

So we hired a caregiver. She was perfect in the beginning. She knew all the little things that had to be done and more for an elderly patient with Alzheimer’s. After about 3 months, and failing to tamp down an overly suspicious mind, we discovered she had been squirreling away food — bread from the bread box, meat from the freezer, chocolates from the candy jar, cookies from Mama’s snack stash — through her son, who would come over during weekends. So when this coronavirus pandemic appeared, we let the caregiver go under the guise that we feared for our sanitation (at first), and then finally released her from the obligation to return by telling her the truth. She denied everything but didn’t insist.

So now we’re back to square one. I’m still complaining but I know nobody can come and take my place at this time. Heck! Bukidnon is under Strict Enhanced Community Quarantine, which means non-residents NOT ALLOWED IN until April 26. So the next best thing?

Write about it! 😁

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Living with Alzheimer’s 12 (a series)

Mama Diaries in the Time of Covid-19

Because of Mama’s illness, she has mistaken me for Nen, and is constantly looking for Gina. When I point out that I am, in fact, Gina, she asks, “Where is Nene?”

Because of Mama’s illness, she is constantly looking for food — food to eat now, food to eat in the next meal, food to store in the ref, food to feed the dogs. For the last few days, she has asked for something to eat every 30 minutes. Our trashcans are filled with cookie and cake packaging.

Because of Mama’s illness, she is constantly asking where we are and where we are going. Apparently, the house we are currently in — the house she and Papa built in 1986 — is not hers and she insists she should “go home” soon.

Because of Mama’s illness, she is constantly waiting for her children to come visit her. Last night, all the dogs in the neighborhood came out (breeding season) and barked and howled the night away. Mama kept telling me to go out and check if Joey had arrived because the dogs were barking.

Because of Mama’s illness, she forgets the answer, whatever the answer, two seconds after it’s given. If you ignore her, she will call you name repeatedly, demandingly, and then when you acknowledge her, she will ask something inane like, “Where are we?” So you answer, “At home.” After two seconds, she will say, “Whose house is this?”

I know we’re on home quarantine and travel is prohibited, but can anyone substitute for me, even just for a day??? I’d like ONE DAY peace and quiet. Even for just ONE DAY.

💆🏻‍♀️

(Author’s Note: It’s been a little over a year since my last installment of my mom’s progress through Alzheimer’s. I thought I could write about my experiences as she lived her life, but sometimes it’s difficult because she doesn’t allow me to concentrate long enough enough to formulate a decent post. Anyway, I will try to post whenever possible.)

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KDrama Review: My Secret, Terrius

My score: 8/10

(Warning! Contains spoilers!)

So I had just finished CLOY and was looking for something light. I thought it would be good to follow HB but somehow I couldn’t get into Secret Garden and Hyde, Jekyll and Me. Then a friend mentioned that the coronavirus made a cameo in My Secret, Terrius, starring So Ji Sub.

Now, I had seen So Ji Sub before (The Master’s Sun, The Battleship Island) but hadn’t been impressed. In fact, he did nothing for me. No attraction, no kilig, no impact. So there was no reason for me to follow him. Even as I started watching My Secret, Terrius, I often asked myself what his effect on Koreans was that they obviously held him in high regard. Perhaps it was the shape of his face, which is actually the ideal shape according to fans? Or his height, which is over 6 feet? Or his chinky, single-lidded eyes, another ideal feature? Anyway, it wasn’t any of that for me.

But I did get into the story. It was, in truth, my kind of story — where there’s a murder, a witness, a conspiracy, a good guy with a secret, a handsome bad guy who will stop at nothing to follow his orders, a damsel in distress who ultimately can take care of herself, and a twist which nobody, not even the best Western writers, could have thought of. (I actually look forward to Korean stories because of “the twist”.) At first, I found it predictable and might have dropped it if it weren’t for the subtle introduction of romance. I was looking for something light, remember?

The best feature (and what kept me going) was the comic relief contributed by the damsel’s circle of friends as well as the heartwarming innocence of her children. Needless to say, my favorite character was the little girl, Jun-hui.

And yes, in Ep 11, the coronavirus did make an appearance but not as a global pandemic like it is now, but as an experiment developed to become a weapon of mass destruction.

All-in-all, it was a well-done storyline and the events were well-spaced, until Ep 15, which introduced the super-efficient matron from Russia who, despite supposedly being the epitome of strictness, had so many weaknesses. I would have wanted to see more action with her, but no, it was tied up quickly with a nice ribbon within the same episode. In fairness, we got to see more physical action from So Ji Sub and I liked that. All’s well that ends well, I always say.

And then, while researching the cast, I learn that So Ji Sub is also a musical artist (singer/rapper). And that he does it really well! I guess it won’t hurt to watch another show of his.

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Living with Alzheimer’s 11 (A Series)

We went to a specialist and one of the questions she asked me was: What are the things your mom did before but doesn’t or can’t do anymore? There are quite a few and in the short time frame given to me to orally describe them, I’m afraid I may not have done a complete job. So I decided to write it out here.

My mom has Obsessive-Compulsive Disorder. I think it was what made her decide to become an educator and eventually made her become an exceptionally pleasing and remembered Home Economics Teacher.

I remember as my own wedding approached, I did something in one of those crazy moments: I declared that I would love to be like my mom one day — the perfect hostess and an amazing homemaker. Little did I expect that it would require a special kind of person to achieve such a task. My mom was such a person. Aside from the ginormous task of keeping our house and our family in smooth, running order, she would collect paper, greeting cards, even magazines, that were given to her or came in the mail or could be found lying around the house, which she would decide as either save-worthy (meaning with sentimental value) or salvageable (meaning she would cut out the unusable portion and keep the still writable space, no matter how small). And she would organize everything according to size, and use them wherever applicable.

Nowadays, she still collects. But not those items she used to spend hours and hours on, clipping and keeping the good and throwing out the unusable. What does she collect? Tissue paper.

In one of my previous posts, I listed the items that can be found in my mom’s bag at any given time. I believe tissue paper was one of them. And not just clean ones. Just yesterday, we brought her on a “joy ride” while my husband and I did some errands. So of course, we had our lunch in a fast food restaurant, and while we were getting up to leave, I caught my mom doing this: she took out a tissue from her bag, tore it into two, wiped her mouth with one half and while holding on to the other half, threw it back into the bag. When I rushed to retrieve it (so I could throw it away properly), I was shocked to find, not just that one soiled tissue, but A LOT! In fact, the whole bottom of the bag was littered with tissue pieces and there was even a roll of toilet paper (still clean) lying on top.

I automatically began reprimanding her about the evils of dirt and bacteria and viruses when I stopped in mid-sentence. My mom was a cleanliness expert! She was the one who taught me not to litter, to clean as you go, to dispose of trash properly, etc. How could she have forgotten something that was so ingrained in her being that her whole life was practically fueled by it like oil?

Now, as I close this post, a thought came to me: She did get some of it right — she didn’t litter and she cleaned as she went.. but somehow, she wasn’t able to completely dispose of her trash properly. So how do you explain the intricacies of the concept to someone whose brain patterns are incomplete? And besides, who am I to do that to her? She is, after all, my mother.

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Living with Alzheimer’s 10 (A Series)

It irks me.

When she does not see me immediately, she thinks I am not in the house with her.. whether I’m in the kitchen cooking/baking or if I’m working at something on the computer in the family room or if I’m in the bathroom.. she will stand up from her lying down position so that she can look for me.

It irks me.

When it is time to turn in for the night, she will remind us about the doors being locked and the gas stove being closed and the lights being switched off. And even if we tell her everything is as ordered, she will want us to do it all again. And again. And again. Until she is somehow satisfied that we are telling the truth.

It irks me.

That she can’t remember something she had just said out loud or that I had just confirmed it.. like 5 seconds ago. It goes beyond logic.

It irks me.

There are only three people in our house — Mama, my husband and me. With my husband asleep on the bed and me sitting at my computer desk (both of us visible in her plain sight), why does she still ask if there is someone in the kitchen? Unless maybe she doesn’t count herself? Or perhaps she has forgotten how to count? To three???

It irks me.

I need a break.

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Living with Alzheimer’s 9 (A Series)

Everyday is a new day.. And every time she wakes up — whether it’s in the morning, afternoon or night, and if it’s after 3 hours, 1 hour or 5 minutes — it is a new day.

So she starts the day with, “Where are we? Tatlo/dalawa lang tayo dito ngayon? (Is it just the three/two of us here now?) Where are the others?” And then the next topic is either, “Ed’s mama has passed away, correct?” or, “Did Joey (my brother) come by today?”

The thing is, I don’t think she really hears the answer or if she understands it because then she will jump to another, totally, unrelated topic like, “I am going to go upstairs/downstairs to find a cooler/warmer spot.” Or, “What are you doing? Ikaw na bahala sa kusina, ha? (You are in charge of the kitchen, okay?)” Or she might go back to the first topic and the cycle begins again.

I just have to be on my toes all the time because I never know what the next question will be. This admission, coming from someone who lives her life ever dependent on routine and patterns.

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Living with Alzheimer’s 8 (A Series)

So we went to Manila to attend my mother-in-law’s funeral. We were there for nine days. On the seventh day — five days after the funeral which my mom attended — my brother and I brought her to a doctor who specialises in Elderly Care. Since I was coming from Cavite, my husband’s home province, I greeted my mom like we had just seen each other yesterday. To my pleasure, she answered in a like tone, and I was about to comment  on it when she added, “E (my husband) is in Cavite? How is his Mama?” So obviously, she had forgotten the main reason we had come to Manila for.

And again, the following day.

And again, at the airport, and all the way home.

The doctor at St. Luke’s Medical Center suggested that there are two causes for Alzheimer’s — the first is the one everyone  believes naturally will happen (old age), while the second is the one everyone fears they will acquire (a disease). She recommended an evaluation that included a psychological test, a blood test, and an MRI (Magnetic Resonance Imaging). She warned us, though, that the results would be later in coming because of the sensitivity of the requirements. Fortunately, we were able to schedule them all on one day because we were departing for home the next day.

I was interviewed as well during the psychological test exam. I guess I was the constant or the basis of comparison for verification of information that my mom would give. To see how far off her memory has become.

Four cc’s of blood were taken from her, which prompted us to drive around BGC (Bonifacio Global City) to look for a fast-food restaurant to replenish her energy immediately. Some of it, we were told, was to ne brought abroad because the reagents for testing could not be brought to the Philippines.

Finally, the MRI progressed smoothly. Mama did everything right, even stopped talking and asking questions. Unfortunately, the technicians would not give us the results, even when they knew the other test reults would not be releases until much much later.

Anyway, it’s waiting time for now. In the meantime, I guess I will just have to adjust my schedule and attitude to be able to cater to my mom.

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