Salute to all caretakers out there

Recently a friend asked me : Why are terminal cancer patients bitter if they said that they had no regrets in life?

She told me about the plight her family faced being the caretaker of a relative with terminal cancer. The relative’s relapsed cancer resulted in her failing lungs and heart. She could not move far without an oxygen tank. The relative gets upset whenever her family goes out to catch a breather, or speaks to other patients. She also has weird requests such as getting bathed at unworldly hours in the morning, and became easily offended by the comments and actions of others.

Her family is feeling sad seeing her conditions as it became apparent that it could not improve and she is just spending her time. However they are also mentally and physically exhausted having to deal with the emotion swings, random requests and inhibition for the family to take a break from care-taking.

Bitter? Anger?

My friend asked me if I felt bitter when I was diagnosed with lupus. I said I was sad instead of bitter. But when I thought about the episodes again, I realised that I filtered out the memories where I lashed out against my family members, especially my parents, when I was first diagnosed. I became vulnerable and sensitive towards any comments, especially those that came from my parents. It was not that I am angry towards them, or blame them for my current life conditions. In fact I was very well aware that they were giving me all their time, fetching me to the hospital, bringing me food and even my diary, accompanying me to wait for my turn in the ward etc.

But it was their very kindness that made me sad and remorseful. I hated that I could not change what was happening to me; I hated that instead of taking care of my family, they have to take care of me; I hated that with lupus, my little glimmer of hope in love has diminished.

Acceptance was never easy.

Acceptance of your loved ones that you have an incurable disease, is also as hard as you accepting it. You need your time, so do they. They have to be strong for you and not to further crush you with their sadness. But it was a grief that you could not see and did not have the mental well-being to be empathetic towards.

For all the amazing people shouldering the honourable responsibility of taking care of a chronic disease patient: It has been a long journey, and please give yourself a pat on your shoulder. It was never easy, because the struggle for acceptance that chronic patients go through are insurmountable. Sometimes they wished that they could burden their family less, but life is not a game like The SIMS or Theme Hospital where you could let someone die and it would not matter.

If you have such a person in your life that you would like to tell them, please let them know that you appreciate all the things that they did. Tell them that you did not intend to hurt them when you lashed out on them when you were sick. Tell them that you really appreciate them giving you all their support and time when you are at the lowest point of your life.

Dear mom, I appreciate very much the fruit juice and porridge that you made for me every morning. I knew that you had to put on a strong face for me, and seeing you walking towards the ward put a lump in my throat. I owe my recovery very much to you.

Dear dad, I remembered the time when you sat with me in the emergency department for hours. You were by my bedside when I was admitted and you bought me honey.

Dear brother and sister-in-law, I am very thankful that you decided to come to the ward almost every other day, to talk to the doctors and specialist, and told me ‘You’ll be kicking ass again soon sis!’ It has really inspired me.

Dear bestie, thank you for spending time with me when I was down, and sharing your experiences dealing with many other chronic disease relatives in your life. Thanks for accompanying me to the ward when I was given my three days IV-shot. Thank you for visiting me in the hospital at night when you were afraid of the dark hospital hallway. Thanks for being strong for me.

I am sorry I have vented my anger and frustration on you, and I now live the best version of my life just so you know that your efforts of taking care of me are not wasted.

Thank you.

Author: Li

The journey with my friend - Lupus, 500 days and counting after I was diagnosed. I like writing, climbing, reading just about anything, watching inspirational movies and movies with a twist, and striving to reach financial independence as soon as possible.

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