Thursday, March 1, 2018

Chronicles Of A Caregiver (Part 2)

Early this morning at 4.30am, a Vellfire Limousine had arrived my door punctually to pick up my dearest wife. She was being chauffeured to the KLIA airport to catch the first flight to Tokyo, where she would catch a direct connecting flight to Houston in Texas. My wife will be away to attend an important conference about world's educational issues in San Antonio besides visiting selected schools for observation in San Francisco. How I wish I could follow her for another "WORKcation" trip but this is sooo impossible lah. My US visa had long expired liao and her lady boss is following her too. Ooops!! I will be Home Alone until next weekend. Haiks!




A few days ago, my wife visited a patient at her apartment in Happy Gardens after getting the help-requests from Doreen. We shall address this female patient as Madam Tan who is a church friend of Doreen and she is suffering from cancer of her ovary. Doreen had advised her to seek help and care from Hospis but she would need to get a referral letter from her doctor. Madam Tan is now bed ridden and would not be able to download the form from the website for her doctor to sign therefore my wife offered to help her on this. I was a bit sad to see this patient as she has lost tremendous weight, with her all skinny & twisted bones making it extremely difficult to move her frail limbs. Her pitiful sight clearly reminds me of my late mother during her final years. Madam Tan is a single lady who lives alone but her very kind friends helped out by hiring a full time maid to nurse and feed her.

Doreen and I have over 10 years friendship today since the time when her late hubby was stricken with terminal cancer. He was under my care and you can read this story on the last paragraph below.





My wife left me with an instruction to follow up with another patient this morning since she had to leave for overseas. She had earlier taken this friendly gentleman Encik Mohammed to see a clinic's doctor for some tests to certify his sickness to enable him to receive further assistance for palliative care. He was weak and had to struggle a bit to walk when my wife fetched him many weeks ago. This morning, I arrived at his flat to fetch him but his condition has worsened. He could no longer stand up or walk at all and his petite wife had much difficulty to help him. She had no strength to push his wheelchair up the slopes as his weight has suddenly increased like a 'dead-weight' which occurs when a patient has lost their ability to move their limbs besides the massive water retention. 

I wheeled him down from the 20th floor of his flat which had 3 very shaky elevators that often broke down every other days. It was scary to imagine what would be like if the elevator broke down while I was inside with this patient in wheelchair who carries a urine bag too. He has colon cancer which has advanced to affect his spinal areas therefore he had to see the specialist at the hospital for further check up and MRI scan. We made our way across the morning's traffic crawl along Jalan Kuching until the hospital where his accompanying wife got down to wheel him inside. I am just sharing with you the reasons he could not be able to rely on taxis or Uber drivers as he has special needs now to be carried up physically when his limbs are sadly too weak to move. The vehicle needs to be able to carry his heavy wheelchair too.

In July 2017, I had posted some sharing on my observations as a caregiver for terminally ill patients in the blog here. Today I will share about Doreen's late husband.

Case #4:
It happened over 10 years ago when fate had arranged to change my life to face the realities of life & death matters by becoming a caregiver myself. My wife had earlier become a Hospis caregiver since 17 years ago as she offered her time to help the NGO when they repeatedly appealed for volunteers to help with their daycare center for terminally ill patients, home visits for the bed ridden and to provide transport to fetch ailing patients to various hospitals for various check up and chemotherapy treatments. My wife had often encouraged me to sign up but I refused flatly as I was too terrified to see terminally ill patients. I would easily cry buckets of tears on seeing them in acute pain and unable to move. I was brought up by my parents who spent their entire lifetime helping the handicapped Spastics Children and running the biggest Home of the Infirm in Penang. To add on with the misery of  the terminally ill patients was too much for me to stomach. 

One day, my wife told me that she had been assigned to fetch a male patient to hospital for blood transfusion, early the next morning. She had been cautioned that she would have to help to physically carry the patient into her car. Sensing that it might be awkward for her to embrace much bodily contacts to hold a male body, she appealed for me to wake up at dawn to assist her for just once. I agreed reluctantly and followed her to fetch the patient at his house in Puchong. We arrived early before 7.00am as his scheduled appointment was at 8.00pm sharp at HUKM. If one is late, you will have to re-book another appointment for the following weeks as there were always hundreds of patients waiting.

The patient's wife Doreen ushered me to enter his bedroom and at that instant, my jaws dropped in disbelief. The patient Andrew was stricken with the rare bone marrow cancer and had been reduced to just a small body of frail skeletons. He greeted me and smiled shyly. My heart sank further to the floor with my head getting blurry on how I could assist him into my car. My experienced wife was quick and prompted to direct me the gentle way to use my 2 muscular arms to carry Andrew up slowly from his lying position. The minute I carried him, he cried out in pain with tears and I mistakenly thought that I was being too rough and inflicted his immense pain. Doreen sadly told me that his whole body's brittle bones and cells have been infested which causes the slightest pain when touched besides breaking easily too. There was no turning back and Hospis Care promptly appealed for my assistance to help this man who became my 'good friend' for 2 years. He had to make hospital visits every fortnight to receive completely new blood transfusions which would take him 6 hours per visit. He always became chatty and cheerful when his body had been replenished with new blood. It became my routine to fetch him and Doreen,  to drop them off before rushing back from my office to fetch him home. Andrew passed away in his sleep 2 years later and it was quite remarkable that he could survive so long as his case was advanced and very suffering. I learnt something from this case that his wife could never get over his death and still calls me every month for the last 10 years! She would just sound cheerful with good greetings over the phone but I could sense that she may have lost her loving husband but part of his memories still lived with me as she had witnessed how I carried and hugged her hubby from the bed to the car and hospital which repeated for 2 years. This had earlier prepared me better that it could also happen to me someday and I should try to overcome this otherwise I might sink into depressions. 
Andrew was a Chinese and Doreen is an Indian which blessed them both with a very pretty daughter with mixed Asian looks like an actress. The daughter was 10 years old when her father passed away and today she is in her final year studying law in Kuala Lumpur.

My article is just for sharing and solely for creating some awareness, just in case you might be able to help and advise someone you know who will need the palliative care. Just log in to their Hospis Malaysia website and download the referral form for doctor to certify with signature. 






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33 comments:

  1. Good sharing. I hope that people would be aware of this and may he rest in peace...

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    1. I needed to create some awareness as almost every single new patients had never heard of this palliative care until their doctors often proposed to them. It is free and costs nothing too.

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  2. I have deep admiration and respect for you and your wife's compassion and willingness to sacrifice time in spite of both your hectic schedules. God bless both of you.

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    1. Thank you, thank you for your kind wishes. I am doing a very tiny part compared to all those in this NGO's team of doctors, nurses and staff. Heh heh....

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  3. Yes, me too... really have respect for you and your wife.. lately, one of my best friend is stricken with cancer too...I feel very depressed after I visit her each time... How I wish that there will be cures for any type of cancer soon!

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    1. I also wish that there will be no more cancers and everyone would expire and die in their sleep peacefully. Sounds impossible lah. Why don't you volunteer in Ipoh at your free time since you are on long holiday now?

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  4. Your wife and you are so noble of heart to be care givers to strangers that I have the utmost respect for you both because it is something that I am not big hearted enough to do.

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    1. I believe you will be able to do just the same as it does not require one's time everyday. It just needs a little self motivation and self realization to embark into this voluntary work to bring relief and comfort to others with our time.

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    2. it is not about the time but the willingness to see the sufferings and be affected by it emotionally. it is much easier to just part with some money as donations and not to see the sufferings with our own eyes.

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    3. I definitely agree with you that it is easier to make donations. However, the journey to enlightenment requires us to become selfless with open hearts and no attachment. Kinda tough, lol. Ha ha!!

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    4. I believe you and your wife will reach enlightenment in this lifetime and will not be reborn into this world but reach nirwana.

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  5. I really salute you and your wife... There are lots of things I must learn from you and your wife...

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    1. Thank you for your wishes. I believe you are now a good care giver to your mum with all the sharing in your blog posts.

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  6. The care & help that you and your wife are providing to the needy are something that not many can do. Great to know a friend like you.

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    1. Thank you for your kind regards. I believe everyone would be able to help in one way or another if they try to.

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  7. I ever read in a buddhist book that those who offer flowers to gods will have beautiful physical apperance in their next life, those who offer food and clothings to the needy will have no lack of food and clothes, i am sure you and your wifey will have good health and live a long life as you all made the efforts to care for the sick, big thumbs up!

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    1. Wow! You read a lot and I never realized what would bring for those who helped the sick. Thank you for your encouragement.

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  8. Each time I read about your volunteer works, you taught me something important about the meaning of life. I respect your wife and you from the bottom of my heart. The helpless terminally ill patients in misery are so fortunate to be able to meet you who are reliable and dependable.

    Yoko

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    1. Thank you for your kind wishes. I also learnt a lot from all the patients along the way about life and pain management. In return I could bravely help both my late parents during their final years. I do admire the palliative care in Japan which I saw over the TV documentary. It was amazing.

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  9. keep up the good work, the world needs u to help/motivate these patients!

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    1. Thank you for your wishes. The world needs people like you to help out too. LOL

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  10. This is just hard to read. It breaks my heart to see people dying and getting sick alone.

    Going to doctor's visits, laboratory works, and other health tests are stressful already. How much more if the sick and dying leaves alone.

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    1. I still do feel heartache and sad after so many years. We share their pain and sufferings by giving them a little comfort and some help.

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  11. Thank you for sharing the story. So sad but it is a fact of life.

    Keep up the good work as caretaker. You sure make a difference in someone's life.

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    1. I hope that everyone would help out as caregivers when the time comes naturally. This is life which is full of sufferings where one needs sickness to die.

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  12. It always makes me sad to read stories like these. :'( Luckily, there's a shining beacon (in the form of you and your wife) to help those in need.

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    1. Thank you for your very kind words. I could not do much alone but I wish to create more awareness for the world to be a better & caring place.

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  13. Love you both. I have no words to express my grief for the patients and happiness to see you carry away like this for the need. I wish you both continue to have good health and peace to do your best aid and caregiving to the suffering people, so that many follow your path to show light and hope on others who lack attention.

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  14. TM, both you and your wife are full of warmth and kindness. God bless you. Reading this brings a little sadness to my heart - a reminder of loved ones I had once cared for and lost.

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  16. sad story, i think if i'm terminally ill and long bedridden i would rather opt for euthanasia.

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