Monday, 28 September 2009

Poor Mum

was reading the papers when I heard their commotion. Went up and saw Mum yelling at Dad, while he looked so irritated and told her to go downstairs.

This has been a common sight in recent weeks. Dad being breathless, could only speak softly. Mum trying as far as possible to help/care for him, but always cant hear him clearly despite having her hearing aid. So when Dad says this, she'll do that. Then Dad had to repeat himself till he got fedup and started shouting at her! Mum being ultra-sensitive will start yelling back and say that he's being so unreasonable and scolding her so often since he fell sick. But seriously, this is not true.

Brought Mum downstair and sat down with her for breakfast. Tried to console her and explain to her that he wasn't scolding her, etc etc. I reckon I had to reiterate the fact to her that Dad's days are numbered and he'll get weaker and weaker. So she had to be prepared herself and be more patient with him.

Think she's also very stressed, so afternoon brought her out to have coffee with sis. Trying to let her have some fresh air and destress a bit. Really worried about her emotional being when the time comes. sigh...

Wednesday, 23 September 2009

Home visit

The HCA Hospice care nurse paid a first visit today. The nurse is a very warm and friendly Indian lady. She asked a series of routine questions and recorded all the medications that Dad is currently taking. She also took down details of patient's spouse and primary caregiver, and income details of immediate family members (in our case, the patient's children).

She also examined Dad physically and explained to us how they go about with the palliative care support. She will visit on a weekly or fortnightly basis to ensure that patient's condition is stable. A doctor will visit with her once a month, or as and when the need arises. And as and when they see the need through their routine checks, they will contact the oncologist-in-charge at NCC to feedback on Dad's condition.

Dad seems quite comfortable with her, and good thing is, she speaks Mandarin too. Let's hope that she'll be able to help lessen Dad's pain in the days to come.

HCA Hospice Care (HCA) is a registered charity that provides comfort and support to patients with life-limiting illnesses and their families. We do this through a hospice home care service and a hospice day care centre. More than 25,000 patients have been treated by HCA since it was founded in 1989.

We understand how lonely, stressful and traumatic it can be for patients and their families to deal with a life-limiting illness. Our aim is to provide pain and symptom relief as well as emotional and spiritual support for patients and their families.

HCA looks after more than 2,700 patients at home annually and the HCA Day Care Centre sees more than 250 patients who make more than 5,000 visits to our centre each year. We are indeed a small charity with a big reach. Find out more about our services for patients at
HCA Hospice Services.

Besides caring for patients, we are also committed to providing training and support for caregivers who look after their dying loved ones at home. Find out how you can join these programmes at
HCA Outreach Programmes.

Besides the adult caregivers, we also reach out to children and youths. With an aging population in Singapore and cancer being the number one cause of death, the numbers of elderly and persons with life-limiting illnesses will rise. HCA's goal is to help our younger generation to relate to and to learn how to care for the elderly sick. We have a
Student & Youth Education Programme aimed at reaching students in the upper primary, second and post secondary age groups.




Wednesday, 16 September 2009

8 Sep

Dad had his CT scan and blood tests done on 3 Sep, and oncologist added an ultra-sound scan on his left arm to check for any vein blockage that may be causing the water retention/swelling.

We went back for his regular follow-up at NCC on 8 Sep. The atmosphere was kind of solemn. I dunno why, but just didn't feel good. Usually the registrar will see us and then check with the senior oncologist if there's need for additional medication or not. But this round, the senior oncologist saw us himself.

I think I ever grumbled about this senior oncologist not very willing to talk to family members, preferring to talk to patient directly. But this round, he spoke quite a bit with me. And unlike the usual where he'll pull out the CT scans onscreen and compare with the previous scans, he didn't this time. This really make me feel very uneasy.

Anyway, he asked about the side effects Dad got from Tarceva again. And explained that they really didn't expect Dad to react so badly to it. Most patients had little or zero side effects and the drug helped eliminate most of the symptoms for them. He asked Dad if he would want to try it one more time, but Dad rejected flatly. Guess he's totally shakened by the experience and wouldn't want to go thru it again. He disclosed that the recent blood tests also showed that Dad's kidney function is weakening and that could also be a possible reason why Dad reacted so badly to Tarceva. This made me recall why the polyclinic doctor always emphasized that Dad has to maintain very good glucose readings so that his kidneys will not weaken. Hmm...

The senior oncologist said that with Dad's kidney condition, they will not be able to put him on other chemo drugs, oral or intravenous. So the only thing they could do for him will be palliative care already. He will refer Dad's case to the Hospice Home Care service and their nurses and doctors will visit on a regular basis to determine what drugs to prescribe to treat whatever symptoms Dad may have going forward. He'll see Dad again in Nov for follow up, but there's no CT scan required anymore.

What is hospice and palliative care?

Hospice and palliative care is a holistic approach that cares for patients going through the last stages of their lives. It aims to meet all needs - physical, emotional, psychosocial and spiritual, in order to alleviate suffering and maximise quality of life for patients and their loved ones. Staff and volunteers work in multi-professional teams to enable patients to live fully and provide support to these patients and their families.

Palliative care is a form of specialized care that focuses on pain relief and pain management for pain caused by illnesses or treatments. Such care is provided in both hospitals and hospices. Hospice care focuses on the emotional, mental and spiritual wellbeing of the patient on top of the physical wellbeing. It includes services that not only cater to the individual patient, but also facilitate bonding between patients, friends,
families and volunteers. Hospices function on the belief that each individual should have a pain-free and dignified death, and that the family of the dying should have support during this difficult period.

Hospice and palliative care is not restricted to any one type of life-limiting illness. Although cancer is the most common ailment of patients receiving hospice and palliative care, a patient with any condition that is terminal and life limiting can be cared for properly under hospice and palliative care. An important point to note about hospice and palliative care is that it is generally provided for patients who have been diagnosed as having just months to live, and not years.

When I explain to Dad about the Home Care arrangements, he seemed to understand what that all means. He seemed calm, and resigned. Felt so lost. sigh...

How many blows can a person deal with in a lifetime?

Earthquake struck West Java again on 2 Sep. So unfortunately, my helper's kampong was affected. She called her brother and found out both their houses collapsed during the quake. The most devastating was her younger twin daughter went missing in school, while her elder twin girl suffered a fractured leg. We quickly packed her back home to look for her missing girl and sort out the treatment for her other girl.

Sadly, her younger girl didn't survive. She was found buried under a thick wall behind the school's toilet. Poor girl was only 11yo. My poor helper's life is really sorrowful! She lost her father at age 7, then her husband when her girls were only 11mths old. And now she has to suffer the pain of losing her own daughter. How much more does she have to suffer? sigh...

Her elder girl had more than a fractured leg. The skin on her forehead was torn off when some concrete fell on her and her right eye lid was cut too. Fortunately her eye was not injured. She had to go thru few hours of surgery just to repair the skin on her forehead, and will need 4-6mths for her bones to fully recover. Poor girl was still suffering from the shock and still screams whenever she feels trembles or hears thunder.

All the 44 households in her kampong lost their homes. The whole kampong was a total mess of rubbles. It was horrible. And when she's there, there were still quite a lot of after-shocks. There were no food, no water, and govt has no resources to help the pple. The only thing they sent was 3pkts of indomee for each person. The stronger men had to travel to the next kampong to bring back drinkable water and some dry food. And when some representatives went to the local govt office for help with food, the only thing they were given was a bag of rice (about size of 10kg bag) for the whole kampong!

She met another FDW on the same flight home who was returning after ending her contract, and so happened to see her in the same kampong again. The poor girl did not even know there was an earthquake and was devastated to return to a collapsed house and a dead brother and father! Such a sad sight.

Anyway, she has moved her family to another kampong, further away from the earthquake zone. She managed to lease a house from another FDW who's working in Saudi. There's a small land parcel that comes with the house and her brother can use the land to do some farming for now. So at least she doesn't hv to worry about the roof over their head for now.

We're glad that we let her go back and settled all these. At least she can continue to work here with some peace of mind, knowing her family's safe for now. Let's hope that her elder daughter will recover soon and be well again.

Tuesday, 15 September 2009

No mood for anything...

it's nearly a month since my last update. There has been thoughts and stuff to blog, but I was just not in any mood to write at all. Frankly, I am feeling very depressed. In fact I'm suffocating.
anyway, gonna just pen down some stuff which I've 'scribbled' on my hp over the last few weeks:

19 Aug
Called NCC to change scan and appt dates yesterday, but in the end the oncologist requested that we bring Dad into the walk-in clinic for a review. Brought him there and was seen by the MO on duty. Sometimes I hate seeing these MOs. They dun read the file records, and then we as patients, have to give them an account of what has happened over the weeks. Then each time, you'll see a different MO and have to repeat all over again! And the other thing is, they like to make sweeping statements based on their own observations, and not taking into account primary caregiver's explanation.

I nearly got into an argument again with this MO bcos he kept saying that there seems nothing wrong with Dad, and all his symptoms and condition were normal in any 80yo. I got so frustrated and told him off! Asked him how would he feel if his father was still walking faster than him few mths ago and now had problem even walking 3 metres to the loo? How would he feel if his usually chatty and positive father suddenly became quiet and lost the smiles on his face? I know I shouldn't have been so hostile, but sometimes we just have to insist to get our message across. At least that convinced him enough to contact the senior oncologist and got him over to review Dad's condition. In the end, the oncologist apologised to Dad for all the discomfort that Tarceva had caused. And gave him some gastritis medication to help sooth his tummy, and hopefully help him eat better again.

28 Aug
The swell on Dad's back is getting bigger. So I told his diabetic doc during his appt, and he decided to make an incision to remove the pus and any debris. After that he'll need to go for daily cleansing and re-dressing at the GP's clinic. While waiting to do the procedure, Dad seemed unhappy. He first grumbled about Mum's itchy fingers causing the swell. Then he lamented that I shd not have told the doc, then he didn't hv to go through all the hassle. But how can I not say? Does he expect me to leave it? With his condition, it might get worse and what if it becomes gangrene? My heart hurts when he sounded like I'm to blame for the ordeal. I'm feeling so weak.

29 Aug

Brought Dad to the GP to clean and re-dress his incision wound. This is the first time I saw his wound. Gosh! It looked bad...

He'll have to visit the GP everyday to clean and re-dress the wound till there's no more bleeding or pus. GP said there's not much debris inside, so it shd heal pretty fast. Keeping fingers crossed that it'll dry up soon.

3 Sep

have this recorded on my hp, but cant remember where I read it or did I come up with it myself??

"When a man truely loves a woman, he'll want to protect her and preserve her dignity in the face of the world."