Thursday, July 2, 2015

Caregiver stress

This is post will be about what is happening for the past 2 weeks. My dad was complaining about his bloated stomach and was thinking of seeing a doctor in Singapore. Unfortunately, the doctor of choice (who did gall bladder removal for him almost 20 years ago and did my surgery last year) is out of town until mid-July. He thought he could wait but the pain was severe enough to make him go to hospital in Jakarta. Fast forward to the eventual diagnosis: colon cancer.

That begins all the stress that I am feeling. Actually I am not too stressed because of the diagnosis. Call me heartless but I see sick people everyday and I am bombarded with statistics like 1 out of X people will eventually get this disease or that cancer when they hit Y years old. It makes me feel that being healthy is a blessing while being sick is normal. My stress comes from how my family members are dealing with this. They think that being healthy is normal and being sick is unlucky and have all the negative thought. Get over it! Gosh.. The disease has struck, just accept it and pray to God for strength to sail through it. Perhaps it is easier for me to say that as I am a very negative person. Apparently that works as a 'strength' during times like this: to realise that this life is God's gift and He has the right to take it away. I can emo all day, all week, all months thinking why God is cruel bla bla bla but at the end of it, when I think of everything comes from God, there is nothing I can do except praying for strength and may His will be done.

The doctor in Jakarta mentioned that it would be an open surgery and my dad was worried about the wound and recovery. People asked me if he should come to Singapore for second opinion bla bla bla. I am not a doctor. I have no idea if this kind of surgery can be done only by open surgery. My thought was perhaps the doctor was not skilled enough to do laparoscopy and hence did not say about it. It makes a difference whether a laparoscopy can be done vs the doctor is not able to do laparoscopy. Thus if he still wants to know whether laparoscopy is an option: YES just fly here!

My dad flew to Singapore 2 Wednesdays ago for second opinion and was planning to fly home on the same day. Unfortunately, it seemed to be bad enough that surgery was warranted on the same evening or latest by the following morning. The doctor said that he could do a laparoscopy (although depending on the condition, laparoscopy can turn into open surgery). The cost here is definitely more expensive than Jakarta so I was not sure what my dad was thinking about. If cost is the main concern, then he should do in Jakarta. If laparoscopy is his concern, then do it here. It is as simple as that. After thinking for a few hours and bargaining, he finally made up his mind to do it here.

The surgery was done on the following morning and the wait was nerve-wrecking. The surgery was planned to be about 45 minutes and we waited until 1.5 hours with no news. At the end of the surgery, he was sent to ICU. The surgeon explained that it was lucky that surgery was done as the blockage was pretty bad with the intestines badly swollen due to the fluid accumulation and perforation was imminent. Surgery went longer than expected as it took about 45 minutes to squeeze out the fluid accumulation. Due to the swelling, laparoscopy was no longer possible and open surgery was a must to remove the swollen colon. Sigh..

I was lucky to have 2 friends working in the hospital and found out that my dad was in high dependency unit, and not the traditional ICU. At least the cost would not explode. The main reason for his HDU stay was his persistently lowish BP 80/60 even after dopamine. We don't know how long his body has been in this condition and after the surgery, there were so many of these complications: clinically dehydrated, electrolyte imbalances, low albumin, pneumonia. That was the longest 3 days of wait. As much as I hate my work, I have to admit that it gives me the knowledge and the calm to breeze through all of these. I did not freak out when I saw the deranged lab values and I knew what was happening.

We also did not know if epidural anesthesia might potentially cause some of these things. But for the record, try not to have epidural if inhalation and IV anesthesia can do it. Why risk an additional line i.e an extra potential source of infection? In addition, the line could only be removed at least 2-3 days after the surgery and after the removal, patient has to lie completely flat for 6 hours to prevent "spinal headache".

After being transferred to normal ward, my dad felt better and was in a 'rush' to go home.From the day the antibiotic was escalated to tazocin, I was telling my parents that at least 5-7 days would be required. I was back to work so I was not sure with the conversation with the doctor. In the end, my dad was discharged after only about 4 days of tazocin. The antibiotic was oralised to levofloxacin and metronidazole. The ID doctor was reluctant to let him go. In fact, during his final check before letting my dad to go, he tapped his back and let me hear that the sound from the right lung was still dull indicating that the infection was still present. He had to come back for follow up 2 days later.

Meanwhile, my mother and sister made things more difficult with their indecisiveness in their plane tickets and their choice of hotel when my dad could be discharged. Haiz.. I don't know how many rounds of messaging and phone calls for them to stop changing their mind and make a decision. I was already very stressed managing my credit cards for the payment and they were just giving additional unnecessary stress. Eventually, we chose Swissotel. I think God was kind to us as we got a discounted rate of $224 per night with breakfast and taxes inclusive. That is about 30% off from normal rate. The receptionist was kind enough to upgrade our room to the one facing MBS whee... I guess she was quite paiseh because she asked me if I were staying for staycation. Nope, it was for my dad's recovery after surgery. Ooops.. Haha.. The room is huge with 2 double beds and up to 3 people are allowed to stay for no additional charges, except if extra bed is needed. Can consider for next time haha...

I also don't know what my mother is thinking. She tries to keep everything as a secret and this makes my relatives back in Indonesia very worried. Her messages were cryptic, even to my younger sister. I got bombarded with messages and phone calls from various relatives over my dad's condition. Jeez, if want to keep everything hush hush, then right from the start might as well do not tell anyone! I mean if you tell someone, obviously they will be curious about what happen next. It is worrying and strange when your reply is something along the line "everything is okay" but you are not going back to Indonesia anytime soon.

This morning my sister called me at about 5am as my dad's surgery site was oozing blood and the dressing was soaked. She asked me if they should go to A&E immediately or wait until the doctor's clinic open at about 9am. I could not give a good opinion if she could not describe the bloody thing properly. One moment she said blood, the next moment she said watery discharge with blood color. "Blood" and "watery discharge with blood color" means completely different thing to me! I asked her to take a picture of the dressing and the picture she showed me was a blood DROP on the bed. WTF -__-" After the call, the final decision was not clear but at 530am she called me if I was coming to A&E as well. After rushing to A&E, my dad asked me why I came to A&E. Win liao lo... Anyway A&E only changed the dressing and asked us to see the doctor when his clinic opened later. Lucky the A&E only charged less than $50. I was expecting a good few hundreds.

I decided to take leave to see the doctor this morning. I have to admit that I was very stressed, tired, and angry throughout the day. My mum and sister were of very little help. They never asked important questions, just made their assumptions, thought of negative things, and made life difficult for everyone. For example, they thought my dad could still only eat porridge. I asked the surgeon and he said he could already have his normal diet, except for green vegetables. Sigh.. it was so difficult to find porridge for this dinner the night before and that was completely unnecessary if they ASKED instead of ASSUMED. So I might as well ask anything I want to know so that I can control my stress when they call me and describe something poorly or extrapolate everything with their negative thinking, like the blood episode earlier. It seemed that the wound was infected and the source of the discharge was under the skin. Some of the discharge leaked through the stapler and hence the watery blood thingy.

I actually did not know my dad's surgery turned out to be an open surgery until this morning when I looked at the wound as the doctor opened the stapler (eeeek!!! can see the abdominal cavity!!). They were with my dad in the hospital for the past 3 days before discharge. If they all knew it was an open surgery with such a big cut, I don't know how it did not occur to them to ask what to do for any bleeding. I thought it would be normal to think of bleeding when you have such a big cut.

I thought I would have a peaceful evening. No.. my sister just called me again because the water+blood discharge happened again after dinner. Freaking out on the phone would not help, you know? And what's the point of calling me for advice if you were not going to listen to any. There were a few choices: call the doctor and ask if they could change the dressing on their own, or get an additional dressing to 'patch' over the source of leakage while shops were still open to get the dressing, or simply freak out. Hhmpph...

Oh God.. I pray for a better day tomorrow. My dad is pretty cool throughout the past week. It has always been my mum and sister who make me stressed unnecessarily. Isn't it sad when my caregiver stress is not due to the patient but due to other caregivers?? Bleah.. I also had my fair chance of losing my cool and FON-ing to a nurse. During my dad's second night in HDU, I asked if I could take a look at the clinical notes. I was irritated when she said I could not due to patient confidentiality. Hello.. I was the patient's son and I was asking on behalf of the patient. If the reason is due to hospital policy, then say so from the start la. If it is due to hospital policy, I know cannot means cannot. Do not give me lame excuse like patient confidentiality and could not reply when I said I was asking because the patient would like to know. Anyway, it was only that one particular nurse lo. The other nurses were very kind and nice. When I asked, they would share with me the exact lab values, exact medicines, doses, etc. Haha.. Perhaps the nurse I FON-ed previously already put a message: son is FON or something. Not something that I am proud of but it makes me realise how bad and crazy the FONs I meet daily. Even with that kind of stress I was in, I could not be as FON as those FONs I see daily.

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