At the end of July, Pap was prescribed new medication to treat his prostate cancer: Ketoconazole and Hydrocortizone.

It wasn’t until this week that Pap finally took the medication. I guess he got kind of afraid to take them because he read all the notes about side effects, etc on the pharmacy receipts. He was supposed to take them 3 times a day and he asked me to call the doc to see if he can take them 2 times a day instead.

So on Aug 17, Pap started Ketoconazole and Hydrocortizone twice a day, morning and night. It lasted only three days.

The first night, Pap told me he could not sleep until 1 am. He also developed more itchiness and senep (gas?).

The third night, Pap’s asthma came back. He did not sleep well that night. He promptly stopped the medication. He asked me to call the pharmacy to see if he could get a different medicine. I explained to him: pharmacy does not prescribe medicine, they could not decide what to substitute one medicine with another medicine. I made a call to Dr. Dubernet’s office on Thursday.

Dr. Dubernet’s nurse told me: Pap is to stop the medication right away for one week. Next week on Thursday, we are supposed to call them back with updates. We would need to report if the symptoms and side effects are gone.

In the meantime, as of Friday, Pap is still recovering from the medication. He walks slower. He breathes heavier (asthma). He sleeps most of the day.

I took Mam to see Dr. Tutson. We saw her in May about Mam’s depression. Since that time, Dr. Tutson prescribed Mirtazapine anti-depressant for Mam. This appointment today was the follow up appointment.

Basically, everyone thinks generally this anti-depressant has worked well for Mam. Before this medication, almost guaranteed, Mam would cry everyday. Even in the early morning just after she woke up. After this medication, she seemed happier. Even Angelica (Mam’s caregiver) noticed a big difference the first day Mam took this medication.

Dr. Tutson asked if Mam is still crying and sad. At first Pap said no. I told her, actually, yeah, Mam is still crying sometimes. Usually in the afternoon, but not everyday like before. Dr. Tutson said she would increase Mam’s Mirtazapine dosage. I was concerned about this, because I read that high dose of Mirtazapine looses the drowsiness effect. I don’t want Mam to not be able to sleep. Dr. Tutson said usually that was with 45 mg dose and above. Mam was actually given 7.5 mg (half a pill), pediatric dose. Normal adult dose is 15 mg. So she wanted Mam to take 15 mg now.

Pap explained to the doctor, Mam usually got restless around 4 pm. She’s usually more agitated, more confused, and sometimes sadder (crying).

Dr. Tutson thought that this was sundowning syndrome. This was the first time I heard about it. But she said this is a common phenomena. Mam’s caregiver that day, Cherri, also heard about it. Apparently, this is pretty common with the elderly. One can be as sweet and as charming as a prince or princess in the morning. But by late afternoon, he/she could be mean, yelling, etc like a totally different person. The treatment of sundowning is to stop the Seroquel (another medication Mam is taking) and substitute it with another one (I can’t remember the name).

Then Pap explained, that usually this condition subsides as Mam eats dinner around 6 pm. Dr. Tutson asked how much Mam eats, how often, etc. We told her, you know, a bowl of rice, with soup and vegetables, sometimes chicken and tofu. She said: that’s not enough protein. She theorized that maybe Mam was hypoglycemic. Dr. Tutson asked that we give Mam more protein for lunch. Protein will hold the sugar level better. She mentioned High-Protein Boost, a drink that’s similar to Ensure that Mam’s already drinking.

So… the only changes we are making this time is to double the Mirtazapine to 15 mg and add protein to Mam’s diet, especially during lunch time.

Mam is to see Dr. Tutson again on October 1 at 9:30 am.

My dad has this cap that he always wears when he goes out to grocery. This cap has an embroidery of Bentoel on the front.

Bentoel is where my dad worked before he retired. Obviously, it had some sentimental value to my dad.

One day, my dad walked out from his bedroom and agitatedly said “Look at what mam did!” He showed me his cap. The Bentoel emblem was gone from his cap. I asked “What happened?”. He said “Mam peeled it off!!!”. Mam was standing around and she said “Loh, mosok? (I did that). No, I didn’t do that!”. Pap said “Yes, you did!”. And the rest just sounded like two kids arguing…..

Many hours later, I took mam for a walk. When mam goes out, she always wants a handkerchief with her. It’s like a safety blankie for a little kit. Because she couldn’t keep track of her handkerchief, we started giving her kleenex or papertowel to her for her handkerchief. She does not know any difference and it’s ok to misplace kleenex or paper tower.

So just as usual, before this walk, mam started looking for her handkerchief. Sometimes she’s wearing clothes that do not have pockets. Sometimes she’s wearing clothes with pockets on her top or pockets on her pants. She usually does not remember where she has the handkerchief. So we have to help her find the handkerchief and show it to her that she has it with her. I was helping her find her handkerchief. She has some in her shirt pocket. I took it out and showed it to her. “This is your handkerchief”.

In between her handkerchief, I found the Bentoel emblem of my dad’s cap.

I called Pap yesterday to actually talk to Dede’s caregiver. I asked how everything was. He told me that Mam had gone to the bathroom #2, but the end of that activity, she ended up with poop all over her shoes and she walked around the apartment with those shoes, including to Dede’s room. Pap said the shoes had to be thrown away. Dede’s friend had to help clean the apartment. How embarrassing!

I am wondering if we have to increase the caregiver hours for Pap and Mam. She obviously need more constant care and Pap these days like to just snooze in the chair.

Pap’s latest PSA has risen from 20 to 25. We learned this today when we went to see Dr. Theresa Dubernet. The doctor said that Pap’s PSA has risen but not by much, not like it’s doubled. I stared at her for a few seconds before saying “but it has been rising, though”. She agreed with that statement. She said we had two options:

1) Do nothing and just follow up in 8 weeks

2) Take new medication and follow up in 8 weeks

I asked Pap if he wanted to try new medication, he seemed open. I asked Dr. Dubernet how exactly does this medication work. She said it was to block adrenal gland. I don’t understand, of course, what that actually meant.

We went to the pharmacy to get the medication. It was two pills: one is Ketoconazole, the other one is Hydrocortisone. The Ketoconazole is normally given to treat fungal infections. When the pharmacist told me this, I got very confused. Pap has prostate cancer, not fungal infection! She was confused too. She went back and looked for a book. The book explained this medication could be given to treat prostate cancer because it lowered the testetorone. [In retrospect, I vaguely remember Pap's testetorone is not like skyroketing high, so I am not sure if this will work].

The second pill is Hydrocortisone. This one lowers immune system. It is to let the Ketoconazole work better.

I am not sure how these two will affect Pap’s sensitive system. We will have to see.

Pap is due to see Dr. Dubernet again in 8 weeks, with another PSA test.

Because mam doesn’t have Power of Attorney, we have to petition for a conservatorship. Bro will be mam’s official conservator. For those of you who doesn’t know, petition for a conservatorship is a much more complex process than Power of Attorney.

Apparently, the Superior Court of California has received the petition and has assigned a probate court investigator. The investigator came last Friday to interview us

When she came, she asked us the basic questions: who’s who, who’s related to who with regards to mam, who’s living in the apartment, who’s taking care of mam, etc. Then she asked us the touchy subjects: who’s financially supporting mam, how much was Pap’s estate, how much was the apartment rental, how often me (daughter) comes, how often bro comes, etc.

Then the investigator wanted to talk to mam. This came out to be somewhat a disaster. The investigator underestimated mam’s Alzheimer and overestimated mam’s mental capability. At the beginning of the interview, the investigator told mam (and asked me to translate) that bro was petitioning to be her conservator and that the court date was to be Aug 28. Mam asked: loh, what month is this. I told her, right now it’s July. Towards the end of the interview, the investigator said to me: Let’s ask your mom what date it is today, since we already told her earlier that this month is July. I told the investigator: no, let’s ask mam what month it is and see if she could answer. I wanted to show her that mam does not even remember a conversation we have 5 minutes ago. And sure enough, she didn’t.

The part that was quite a disaster was when the investigator asked me and pap to ask mam: Do you want your son to be your conservator. We botched this one. The words we’re using to translate “conservatorship” were “to take care of” (ngrawat, ngo-pen-i). Mam asked: loh, where is Hien (lah Hien ndik mana)? We told her: in Washington. Then she said: loh, how come he’s that far away he wants to take care of me. I don’t want to go there. I translated this to the investigator. She told me to tell mam: she doesn’t have to go to Washington. Mam said: then he has to come from far away here. No.

At that point, I had to explain to the investigator, that we were having trouble translating the concept of “conservatorship” to mam. Not only that there was no direct Indonesian words that meant the same thing, this whole concept of a son having to petition the right to take care of parents was just foreign to Indonesian. This doesn’t exist in Indonesia.

The investigator was quite puzzled. So what happened when someone became old and unable to take care of him/herself ? I told her: then the children stepped up and did it. She said: oh, what happened to people who didn’t have children. I said: then the family member stepped up. The notion that people have to involve the government for this….. it just doesn’t exist.

The investigator was still relentless. She wanted me to ask mam: was there someone else mam preferred to be her conservator. Again, we translated this to mam: selain Hien, ada orang siapa lagi sing mam mau untuk ngrawat mam (other than bro, who else mam would like to take care of mam). Mam pointed at pap.

There were a couple of more variation of this question — all resulting to mam pointing at pap.

Several times during this interview, mam cried.

I am not sure what the investigator would write in her report. I hope she eventually understood mam’s level of mental capacity.

The worse was: the investigator told me, the court would appoint a lawyer to represent mam. This lawyer would come and do his/her own interview with mam, to make sure mam is represented well. I can already tell what’s going to happen next. Same thing will. What’s even worse: bro or me may not be here. Pap is left to translate and may even get double misunderstanding.

The whole process, the intention is quite understood and I can see why we have this process. But as with any process, it addresses the average situation and predicament. With unusual circumstances around, this process just doesn’t work well.

Let’s just hope the judge is too busy to care for simple, uncontested petition like this.

Today Mam has been rambling about a pair of medicine cabinet.  She kept on saying that she had that before and she didn’t know where they went.  I guess she’s having one of the episode where she remembered something but didn’t remember the rest of the thing.

She’s been addressing herself ‘tante’ to me so I guess she doesn’t remember her son today.  I played along as usual, trying to get her to remember something that she’s trying to tell to me.  All I get is a pair of medicine cabinet standing side-by-side about knee high tall.  I don’t remember if Mam has something like that in Malang.

She also mentioned that her 2 pairs of shoes (blue and tan) are old shoes and she’s kinda upset that she couldn’t remember when she bought them.  I told her that maybe Dede bought them for her.  That calmed her down a bit. 

I showed her a wedding picture of her and Pap.  She didn’t recognize it.  She thought they were someone else in the picture.

She mentioned that her tummy hurt, but when I asked her, she said that it wasn’t like diarhea.  Later on I asked her again and she said that it’s gone.  I’m guess it’s just an indigestion but I want to let Pap know to watch out for things like that.  She may not be able to say what she feels for something like that.

I caught her taking the knife to try to smooth her finger nails a couple of times.  I offered her to clip her finger nails.  She hesitant at first, but I was able to persuade her to let me do that.  I clipped her toe nails as well since it looks like they haven’t been clipped for months.  Overall, she’s feeling good this week.

for Thursday, July 2nd 2009 by Hien

Mam is looking to feel better today, not much crying during the day.  She tries to go out by herself several times during the day but the locked door has stopped her.  She seems to cope with the locked door.  Note to self: tell the care giver to make sure that the door is always locked when they go out.

I offered her if she wants to go out, I can unlock the door for her but she said that it’s not necessary.  For a couple of times, I just open the door anyway and she goes outside to walk around.  So far, my observation suggests that it’s a harmless activity for her even if she walks by herself.  I do check on her every few minutes, of course.  Brandon can also keep her company since he likes to pace around. 

We have a small incident with Carolina (the cleaning lady) this morning.  When Carolina does her usual cleaning, Mam follows her around.  Mam thinks that she’s a guest so Mam tries to persuade her not to do the cleaning.  Mam keeps saying that “Carolina works too much, pity her, we can clean our own house”.  I told Mam that Carolina’s task is to do the cleaning but she still says that she’s not suppose to work that much.  She keeps follow her around trying to say not to work so much in Indonesian.  Poor Carolina doesn’t understand what Mam says even a bit and she tries to dodge her around while trying to clean/vacuum.

At some point, it looks like a football game at Green Bay in the middle of winter with 12 inches of snow in slow motion.  One person carries the ball and the other person tries to strip the ball off.  Finally, Mam kinds of settle down when I tell her that Carolina likes to clean, so we should let her because it will make her happy.

Funny thing is Pap slept through the whole thing.  He didn’t budge a bit.

for Sunday, 28 Jun 2009 by Hien

This morning Mam doesn’t recognize me.  After telling her that I’m her son and Brandon is her grandson, she cries.  It looks like she’s been kind of down these past few days (more crying).  It’s possible that she’s had quite a bit of changes lately (new people coming in, new faces) so perhaps it affects her.  She tends to be more nervous when around new people.

First day on Mitrazapine had started very well. Angelica took Mam for a morning walk. When they got back, I told Angelica that we were trying a new medication for Mam. Angelica said she could notice the difference. Usually, when they stopped to take breaks during walk, Mam would start crying or ask for Pap. Angelica commented that not even once Mam asked for Pap. Mam was even asking Angelica where they’re going and making small conversation.

During the day, I did not noticed Mam crying at all. But then again… I was busy.

I was away most of the time in the late afternoon. At dinner time, Pap said Mam started feeling mopey. By bed time, around 8 pm, she got a bit angry. Pap wanted her to swish (she had stopped brushing teeth) her mouth with some water. She completely refused. She talked total non-sense, pointing outside, telling us there were things outside to be picked up for swishing. She insisted in taking me outside and showed me the railing of the apartment. She said the railing was what we needed to pick up for swishing. It did not make any sense at all. I managed to get her back inside, then locked the door behind me. I lured her to the sink and asked her to swish. She said “you can swish. I don’t.”

I gave up after that… I had to run some errands…

Pap thinks yesterday it took two hours from 8 pm before she went to sleep.