Archive for August, 2011
I hope you guys enjoyed Mariam’s last post. She is becoming quite a writer, so I have taken a back seat. She has much clearer idea of what goes on in Mummy’s head and of all of us (I, Papa and Mariam) she can interpret what Mummy is trying to communicate best.
Well Eid Mubarak! Yesterday was Eid which literally means Feast and it basically one of the two major religious holiday of Muslims. This Eid is called Eid- Al Fitr which marks the end of the fasting month of Ramadan. Muslims go to prayers in the morning, usually followed by as the name suggests lots of eating and meetings and greetings. You can check out some Eid pictures here on Huffington post.
In one of her earlier posts, Mariam had a wishful thinking that maybe just maybe we would be able to taking Mummy to Eid prayers. Well guess what.. We did! And it was absolutely fantastic.Mummy changed into her fancy dress and loved going out and seeing all these people dressed up, kids running with donuts, girls in colorful clothing, everyone happy. Many of our friends came and met mummy lots of hugs and kisses for her. It was just fabulous. We got back home and Papa made with a lot of effort his signature kabob. They were delicious. We had family over which she always enjoys. Lots of food and laughter in the house. Things were “normal” this Eid.
I moved out of my parents house back in 1997 to go study in New Delhi( India’s capital city) and then moved to Los Angeles in ’99. In 2006, I did Eid with my parents after 9 years in Toronto, CA. That was very special. This Eid was similar to 2006, but had a bitter after taste. Mummy was fine in 2006 or that’s what we thought. Life was easier and Toronto was cold!
Mummy kept saying after everybody had left later in the evening how much fun she had on Eid. But then came the time to sleep. She did not sleep. She was up till 5:30 Am this morning when Papa woke up and took over the charge and I went to catch sleep for couple of hours before work. When I left for work ( a bit late) at 11 Am she had been up for more than 24 hours. This was after she had taken all her medicine which include quite a bit of sedatives and tranquilizers. Not a good sign and certainly not good for her.
I just talked to her neurologist and it turns out that one of the medicines she took has caffeine in it and she is hyper sensitive to caffeine, even in small amount. Lets hope that she runs out of her caffeine high from the medicine that she took yesterday morning by the end of today and gets a good night sleep tonight.
‘Twas the night before Eid,
And all through the house,
Dinner was being debated over,
Eat in or eat out?
Home cooked meal,
or Mas Chinese Islamic?
If we all go,
Will Mummy panic?
“Let’s just try,”
“She’s been in a good mood”
Let’s get ready to go,
And get us some good food.
So along we all went,
And sat down to eat,
While Mummy asked,
“where do I put my feet?”
Chow mein and shrimp,
Corn soup and chicken,
Mummy ate her fill,
Mummy liked it a lot,
She ate till it hurt’d,
“I want more!”
She impulsively blurted.
“You’ve eaten enough,”
“Don’t worry, you’re done”
We told her as she
Wanted to have more fun.
Soon after we left,
Headed for our humble abode,
She said her tummy hurt,
Must have been her plate’s load.
‘Twas the morning of Eid,
Here arrived the Big Day,
Mummy put on her finest,
To join her community and pray.
She was excited to see,
Such a vibrant crowd,
It didn’t bother her in the least,
That the baby next to her was loud.
When prayer was over,
We piled in the car to go back,
Feeling hopeful once more….
That she was on the right track.
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.
Every Friday, Papa has to be dropped off to the masjid (mosque) for Friday prayer. As of a few weeks ago, this was not an easy task. The logistics of such a simple thing made Papa and I dread Fridays.
We would have to spend an hour to an hour and a half convincing Mummy to come for the drive with us because we couldn’t leave her alone at home while I drop Papa off. Anis works too far away from home to drive home during his lunch break and take Papa.
Mummy would usually cry, get angry, and cuss because of the stress of getting into a car and being driven ten minutes. Her agoraphobia wouldn’t even let her take a walk outside the house. She would finally agree, but would be in tears the whole time, saying she didn’t want to go, just leave her all alone in the house.
By the time we dropped Papa off, she’d want to come home, so we’d drive back home. Sit for half an hour, then I’d have to convince her that we needed to drive back to pick Papa up from the masjid again. Again, fighting, tears, cussing, and anger.
Then we decided we couldn’t put Mummy through this. She would be miserable the rest of the day, and it just made things worse for all of us. So Papa decided he would take public transport every Friday.
Here’s the problem with that scenario. 1) Papa is diabetic. 2) It increases the time which he’s gone, because now he has to factor in travel time, bus schedules, etc. 3) Mummy can’t survive 5 minutes without him being around. Her anxiety level shoots through the roof, almost always ending in a complete emotional meltdown.
The public transportation option lasted for one Friday before we decided it wasn’t a viable option for us.
And then we started giving her the new medicine, which completely changed all of this.
Now, instead of crying and getting angry over dropping Papa off, she’s more than eager to go for a drive, at any given time of the day.
Instead of waiting in the car for the whole hour that Papa is at prayer, or doubling the trips by going and coming back and forth, what we now do is drop Papa off, then Mummy and I go for an hour long drive until it’s time to pick Papa up again. So we’ll go get an ice cream cone from Mcdonalds, or a sweet treat from Starbucks, or we’ll go house hunting, and I’ll ask Mummy’s opinion about houses and she’ll tell me, or I’ll run errands like getting gas or going to the bank.
She enjoys the drive, but by the time Friday prayer is over and we pick Papa up, she’s ready to go home and rest again.
Fridays are no longer dreaded, there aren’t any tears shed anymore, and no more temper tantrums. Mummy gets her outing, and Papa gets to catch Friday prayer in peace, with no worries or guilt, and it serves as a mental break for him. Fridays are now enjoyed by our household.
So when Friday morning rolls around, we can now wake up saying “T.G.I.F! Thank God It’s Friday!”
This is a short post about what happened last night, it was pretty funny at the time.
Anis and I went into Mummy and Papa’s room at around 11-ish. Mummy was still up, so Anis asked, “Mummy you’re still up!”
She smiled and said, “Yes, I’m still up.”
So Anis said, “It’s late, you should be sleeping and snoring by now!”
Mummy responded by pretending to snore loudly, while all of us laughed.
Goes to show her sense of humor is still there!
Since I’m relatively new to the family, I don’t have as many memories of Mummy as Anis and the rest of the family do. But one of my favorite memories of Mummy was shortly after we got married. I had a splitting migraine that just wouldn’t go away, so I was lying down on the couch with my eyes closed, hoping I could sleep it off. Mummy came with a bottle of vaporub, and massaged my forehead for what must have been an hour or an hour and a half. She massaged my head with very soft, gentle hands, never stopping to take a break, until my headache was gone. All I remember is waking up feeling completely refreshed and headache free. That is one thing I really miss.
As Anis sees his mom go through her disease, there are a lot of things he reminisces about and misses. Her siway on Eid morning. Her cooking. Her rational thinking and intelligent discussions. Her prayers for him. Her compassion for others. Her caregiver mentality whenever he was sick. It’s tough on Papa, it’s tough on her kids, and it’s tough on her relatives, who watch her disease take away these moments and turn them into distant memories that are spoken of in past tense. It’s no longer “Mummy cooks this really well,” it’s “Mummy used to cook this well” “Mummy used to do this” “Mummy used to do that” “Mummy was this, Mummy was that”.
One thing hasn’t changed, though. Her compassion for others hasn’t changed. Yesterday I was complaining to Papa (an orthopedic surgeon) of pain in my right arm. Mummy got up from the couch opposite mine, walked straight to my couch, sat next to me and started to talk. At first, I couldn’t understand a word. It seemed like random words, mushed into a sentence, with no meaning. “I came, then I stayed, then I went, then I walked straight, then I thought, then I sat, and I came, because I thought, then I tried, so that I could, then I sat, so I want to know, (points to my leg), what I can do.”
Allow me to decode what she just said.
She heard me talking to Papa about my arm pain, so she was telling me that when she heard what I said, she got up, walked straight towards me, sat down, and wanted to know what she could do to take my leg (she meant arm) pain away.
Then she held out her arm and told me to take it, so that my arm would stop hurting. The 3 of us had a good laugh about it, but when you look at her statements, it’s a shadow and a glimpse of her mentality and how she used to be.
Decoding her statements can be super tough. Sometimes, all 3 of us will have no clue as to what she’s saying or who she’s talking about. The key to decoding what she says is to recall what you talked to her about that day. For example (this actually happened):
Anis asked Mummy a question (probably something like do you want more food, something like that).
Mummy said, “No sir.”
Anis said, “Yes sir or no sir?”
Mummy laughed and said, “No sir.”
Then Mummy got quiet, whispering to herself, thinking about her nephews Yasser and Nasir, whom the family affectionately call Yes Sir and No Sir.
Then she realized that they are her sister’s kids.
Then she thought about her sister who the family calls “Moti” but who she has started calling “Guria”, but Gurhia is Anis’s sister, aka her daughter.
Confused? That’s ok, we all are.
5 minutes of silence later, Mummy says, “Call Gurhia where is she?”
Anis says, “Your daughter?”
Mummy “No no, the other Gurhia.”
Then Mummy tries to explain who she’s talking about, but doesn’t have the vocab anymore to express herself, so it comes out sounding like gibberish. Anis is all confused, but trying to understand who to call, and trying to figure out who the other Gurhia is.
I asked Mummy, “do you mean Moti?”
Lightbulb goes off in Mummy’s head. “Yes! Moti! Call Moti!”
Yesterday, she was sitting on the couch next to Anis, and saw her reflection in the patio window straight ahead of her.
“Someone is sitting there!” She told Anis.
We explained that it was her reflection, and she was trying to understand the concept of reflection. She kept asking “but how am I there when I didn’t go there I’m sitting here?”
A few minutes later, Mummy points to a random spot on the wall and says “There are people there.”
Anis said, “There’s no one on the wall, Mummy,” thinking she was hallucinating.
Again, Mummy tried explaining in gibberish.
Anis finally got that she was talking about the whole reflection thing again, so he pointed to the glass and said “Them?”
Mummy turned and looked, lightbulb went off, “Yes! Them!”
She was stuck on that topic for a while. Anis went and took her for a walk around our complex. When they came back, she sat down, looked at her reflection, and smiled.
“They’re still sitting, this whole time! I went and I came back, and they’re still here!”
Her mind still couldn’t grasp the concept. Her mind probably never will. That’s just something we have to accept.
Day before yesterday was taco night for iftar at our place. Mummy loved it! Though she had some trouble folding the taco and eating it, with a little help from Anis, she ate it and thankfully devoured her food.
Her food habits are a little bit limited nowadays. For breakfast, she likes eating Hawaiian bread with melted Kraft singles cheese and soy milk. We started giving her soy milk when we suspected regular milk was upsetting her stomach. Soy milk has tons of protein, plus mummy loves the sweet, vanilla flavor.
Lunch, she usually either eats the same thing as breakfast, or if there are any good leftovers from the night before (namely rice and any form of chicken curry) she likes that too.
We try to structure her meals as much as possible because of her sedentary lifestyle. She spends most of the day sleeping/sitting/lying down, if she eats more than she needs just for the sake of eating, she will put on weight fast. Increased weight makes it harder for us to help her if she falls down, for example. When she fell down the other day and Anis had to lift her up, it was tough!
So between lunch and dinner if she does get hungry (which she usually does) we try not to give her another meal, but healthy snacks like fruit, or fruit yogurt. She has a major sweet tooth, so sometimes we give her coconut cookies (her favorite).
By the time dinner time rolls around, Mummy is ready to eat! She does not enjoy spicy food at all, so she actually likes American/Arab food because of the mild spice level. Usually, whatever we make for dinner, she eats. Only rarely do we have to make something separate for her. She eats with her eyes before she eats with her hands, so she likes things to look good and neat. So, for example, if there’s chicken and rice for dinner, she likes to see the chicken whole instead of one of us taking the meat off the bones and giving it to her like that.
She says she doesn’t like rice and likes bread better, but rice is easier to eat than bread for her. She normally has trouble making morsels of food to eat when she eats with bread, but with rice, she can eat on her own with no problems.
She’s not a big veggie person, there are only a few veggies that she will eat. Alot of veggies Anis does a pretty good job of convincing her that she likes it. She loves chicken and mutton. Beef tends to upset her digestive system, especially ground beef, so we don’t give it that often. She loves pasta! And cheese!
After dinner is Mummy’s medicine time. This sometimes confuses her. Papa puts the medicine in her hand, and she doesn’t know what to do after that. At this point, usually the 3 of us accidentally simultaneously instruct her to put the medication that is in her hand in her mouth. (We’re working on it). This confuses her even more. So Anis takes charge, tells us both (Papa and me) to calm down (lol), then tells Mummy how to get the medication from her hand into her mouth, then gives her water.
After dinner, it’s prayer time, chilling out for a little bit, and then bedtime. Before we convince Mummy that it is bedtime and she needs to sleep, she wants to be reassured about a pressing issue to her. She won’t sleep unless she is reassured about an important issue.
“Have I eaten dinner yet?”