Checking out

04052012.1345

We fought in front of mum, which I know is not pleasant for her to see. In the chaos of checking out the hospital, with so many things to pack, and documents to sign, bills to pay for, and follow up appointments to be made, it did not help that brother made a fuss about what happens after mum returns home.

"I can't take care of her! I don't know what to do!" he kept on saying.

I got upset. "What about me? Did I know what to do? You just learn as you go along!" I retorted, "I can't believe that you two cannot manage to take care of mum when I managed by myself all these months!" I know, it doesn't help to deescalate the situation, but it's been bothering me. He's not even tried to do much since he got back home (admittedly, he was struck down by the cold, but still, he has so far done sorrily little for mum or spent much time with her.

As brother and I exchanged words, mum lay languishing in bed, in great discomfort. I didn't expect him to miraculously know what to do, nor did I expect him to give mum (frankly...) the same level of attentiveness and care I give her. But I did just want him to take some initiative. Take some Initiative, not just be away with his family in another part of the country while mum needs support and as I am about to leave.

Brother got upset when I shouted back at him, something I rarely do. And he started to just throw things around as he packed them. Very mature. "Is this how you want to be?" I asked him, "How can you make mum so insecure and feel some uncomfortable about going home, when she's been so looking forward to returning to the comfort of her own home after being in hospital for so many weeks?"

The main problem is that we've gotten used to having a 24hr carer over the past two weeks. She has even exceptionally good at making mum feel assured, and making sure mum eats and gets up to exercise and walk about at regular intervals. And importantly, the carer could help mum go to the washroom and shower, which can be an awkward experience if I or brother both boys, were to do it. At first we thought that perhaps she could come back home with us, at least for a few days for us to find another live-in carer, but her agent refused to let her go home with us, and arranged for another shift at the hospital as soon as they heard mum could be discharged. That was the reason for brother's panic. he even proposed that mum stay in hospital a few more days so we can take advantage of the carer in the hospital, which was ridiculous, as mum, if she could and had the energy to, would sooner jump out of her hospital bed and rush home. She has been so looking forward to going home!

But panic, and a bit of angry goading from me, is good. Brother got on the phone and started calling and making arrangements, trying to get ahold of human resources agencies who could dispatch a carer within short notice.

I sat with mum and tried to reassure her it would be alright, told her not to be afraid. Deep down, I was planning to change my departure if need be, to stay around to help out more so brother does not become overwhelmed and lost.

We wheeled mum out the hospital, the first time she breathed fresh air, the first time she left the hospital building since she checked in on 20 March. She was very frail, still very weak. I held her hand throughout the ride home. "Almost home," I told her, "it's been far too long..."

When she got off the taxi, there was a step, and she could barely make that step. Her legs had really very little strength, her body had very controllability. It was then that I saw she really needed help, and that it would be a long, tricky road ahead for her to recover and be well enough to walk around on her own. If ever.

We put mum in her own bed. I had rushed home straight from my trip south and before I headed to the hospital to tidy her room a little and make it presentable. Most important of all, I put the mattress top I bought her clandestinely over her bed and under fresh, clean sheets. I hoped she would not notice, but how could she not when there's an obvious difference in "elevation" between where there is a memory foam padding and where there is none?

"What did you buy?" mum asked as she lay on it, "How much was it? How much?"

I didn't answer her question, or at least I answered her with a question. "Is it comfortable? It's supposed to support your whole body so you feel less sores and pains." And that is all that matters, however many times she asked me the price, and even saying she would go back to that store to check the price on her customer records.

"It doesn't matter how much. You're home now and I hope comfortable..."

Breakdown

"How did we come to this? How did we come to this...?" I said, more to myself. I looked out the window at the city under the cloak of darkness. It's so bright out there, but in this room there is a low depression flowing through. I shed the first of many tears. I felt so very very sad and disappointed... So misunderstood, like all my efforts to make her feel comfortable and somewhat happy are in vain... Like all my worries and fears are wasted energies and times best spent elsewhere...

I know mum's illness and discomforts are making her moody, and perhaps the drugs are pushing her over the edge. I'm not saying she's become nuts, but for the last half an hour or so just before she laid down to sleep, she scolded me for this and that, faulting me for many things that I have done wrong and good enough.

I cannot blame her, I cannot get angry... In fact I'm so saddened that she is becoming this way. Thinking about it, about the possibility that perhaps she'll just get even worse as her illness progresses saddens me even more...

She faulted me first of all for buying the wrong size of strap to protect her stomach wound. It's too tight, she said causing her much discomfort and itchiness. She accused me of not consulting her when I make purchase and that I impose my will on her. I only bought the one I thought would fit her, for she has lost so much weight over the span of six weeks...

Next came the accusation that the massage oil I bought her last week smells bad, and this she told me this after I applied it to her arms and legs to tonight, perhaps a week since I began the routine of massaging her feet before sleep, thinking the lavender scent will help her sleep easier. It's not the smell she wants, she said, and she's just been putting up with it for all these days... All I wanted was to make her sleep better, to take away some of her sores and discomforts...

Then she faulted me for the fact that my brother and his family are coming back next week too spend some time with her. She says it's against her wishes, and that it's a waste of time for them to come back. "Why now? They showed me such disrespect before on Europe! Why now at the very end?!" All I wanted is to let her spend more time with her grandson... All I wanted was to give my brother (and sister-in-law) a chance to reconcile and spend some moments again together...

And she faulted me again for raising questions about the surgery and about inserting the NJ tube. "Can't you see what a little morphine can do to me? And you want me to go into hospice care?!" But I just wanted her to see the risks, to consider the fact there exist options out there... and did we not already do the surgery and insert the NJ tube, so where's the problem?

She even accused me of telling people that she's going crazy and accusing me of talking behind her back and complaining about her to the monk in the mountains and to a friend I've not even spoken to in maybe two months... I've not done any such thing! In fact I've not been talking to my friends much, and have been trying to insulate them from details of how difficult the situation here is... In fact, all I say to the monk or anyone else is how mum's condition is, and how concerned I am about her wellbeing...

I was angry, and so heartbroken by mum's accusations and sudden outbursts. "Fine, I'll stop doing all those things that I did so wrong. Fine, I have been so wrong and did so many things to anger you..." I was hurt, and so close to just bursting out in tears... I felt so alone in the world, so very, very alone...

Why is it that the people you love and care about most can say things to hurt you and disappoint you the most? I realise again this feeling of being wronged, of being so misunderstood-- feelings I had with my ex a couple of months back. Feelings I now am having with my own mother... Perhaps the "problem" is me: I care too much what other people say or think. I was to please people, but instead invite their wrath and annoyance. I was reminded of what the tarot card reader told me: I often do so much, too much, for other people, and yet at the end of the day, I will become very hurt and disappointed by their response. How true, and how painfully true that this is even the case with mum...

I apologised to mum. Yes, I've been moody at times. Yes, I may be thick skinned and want to do things my way thinking it's best for the other person. Yes, I'm careless sometimes and make mistakes. Yes, yes, yes, and I'm sorry. What else could I do but apologise? I raised my voice to argue in the beginning, but at one point I just didn't see the point. Why provoke her even more? Why torment her even more?

I put her to bed, arranged her blanket and wiped a bit of her massage oil off with a wet cloth. I was annoyed, and just wanted to sit in the corner and collect my mind, my hurt and painfully disappointed mind that was so taken aback by the sudden and dramatic turn of events, and by mum's outbursts and anger.

"Maybe it's time for self-reflection. Maybe I shouldn't be doing so much to annoy you and cause you much trouble..."

I had a thought, an ugly thought. I must be selfish, more selfish and focus on my own life, my own wellbeing, my own happiness. I can't ever please others, for there will ways be something to say, something to criticise. But I can't say much if I just go and do my own things, live my own life away from the very people you think are so close and dear to you, and yet with angry exchanges and sudden outbursts can leave you wondering why you have invested so much time and energy on them for.

Time to stop doing others a favour, time to do myself a favour, and live free from all this.

Angry, again...

She was sitting in her bed, ready to retire it seemed. It was barely nine at night. I climbed into mum's bed to join her, to have our nightly 'goodnight' routine of a bit of talking. I would lie next to her, roll around a little like a little boy. It's my way of saying to her "I'm still your little boy!" And occasionally, she would reach over to stroke my head. I know, it sounds silly, especially being twenty-eight and a grown adult already...

We got talking, and mum began suddenly saying that perhaps she wants to change house. I was surprised, for it was the first time she mentioned it after the seemingly premature attempt to look for an apartment for her in the central part of the country earlier last month. She somehow came to the conclusion that perhaps it is good for her to leave this house, even though she moved in only around two years ago. It's too small, she says, and the ceilings are too low, making it feel very confined and after a long while oppressive. I was of course glad she came to this conclusion herself, and reassured her if that is her wish, I would do everything I can to help her find a place and help her move. There is nothing more I would like than to make sure she is settled and in a place where she feels comfortable and able to begin a new life, away from the old one.

That got us talking about her life, and her future treatment. I again talked about the cancer welfare foundation I recently paid a visit to and where I spoke to a welfare worker about "alternatives" to just treatment. I have been meaning to take mum there, but she has not shown any interest, and always says she's too "tired". In a way, I think she is afraid to reach out, afraid to go to a place where there are others like her... afraid to step out, which may be understandable as she has been struggling through this on her own, more or less, for the past six years now. But as I have repeatedly told her, I cannot be the sole source of her outlet... I cannot be the only support she has and the only person she confides in, for I cannot handle it alone. We need help, we need help and support from people who can fully empathise with her condition, who can really know what it feels like to be a cancer warrior.

From that conversation, we got onto the topic of changing her main physician, an oncologist. Since her recent surgery, and even before that, he has been quite curt and sometimes even dismissive of my mum whenever she goes to see him. We all think (and I can say almost for certain we know...) it's because he's jealous and bitter that since the discovery of the tumour in her spine, mum has been seeing another doctor, who is a specialist in neurosurgery. His jealousy is evidenced by the fact that last time he outrightly, without even knowing details of her surgery, told mum that her voice won't get better because they damaged her vocal chords during surgery. But her voice is getting better, her voice is in fact almost back to its old self again (though still frail, but that is more due to the fact she has been eating very little of late...). It was this neurosurgeon who mum has come to trust more than her own physician, for he gives her much confidence, and talks to her very frankly about her condition. It was under his advice, and with his oversight, that her spinal surgery was beautifully and successfully performed.

 So for over a year, mum has been mulling about changing doctors. But she has not yet done it, because she struggles to find ways to change doctors without feeling "awkward" or hurting the main physician's feelings. What I fail to understand is why mum feels any obligation toward staying with the guy when he has obviously been dismissive of her, and even curt toward her? How does that even make a patient feel confident about getting better or have any trust in the doctor? We found a suitable replacement, but mum has been dragging her feet and hesitating about going to see the possible new oncologist for a second opinion. Mainly because the possible new oncologist is in the same hospital, so he and the old one are colleagues.

I got upset, because we have already been through this over and over again. The old oncologist won't feel a difference whether she is his patient or not. What obligation is there toward him, even having been with him for five, six years, when he is cold and behaving unprofessionally towards the patient? I am so very close to filing a formal complaint against him with the board professional doctors!

I admit, I raised my voice and got frustrated at mum. I pressed her for a reason why she cannot change doctors, but she just closed her eyes, looked away and said "I have my considerations..." I admit, I pressed her for the reasons again, and perhaps that provoked her to lash out "OK! You decide everything! I'm already so tired, and this is making me more tired!" Mum turned away and covered herself with her thick blanket. The last glimpse of her face was one frowning, full of disappointment, anger, remorse. The worst way to send someone to sleep...

I was just trying to help, trying to move beyond an impasse and hopefully get a second and new opinion on her condition and course of treatment... I know mum would never ever do it if it weren't for me pushing for it and asking about possible oncologists we could consult. She has been already waiting and seeing the same oncologist for over a year, even though she already feels uncomfortable going to see him. I really was trying to help, not provoke a crisis and cause mum so much anger and grief... 

I was myself filled with such sadness, such a feeling of being misunderstood, such remorse, such deep, deep guilt. Tears threatened to burst out there and then...

I rushed to the kitchen to  pick up the heat packs I warmed up for her earlier, and put them on the bed next to mum. In my eyes, large tears were already rolling and threatening to fall. I did not dare to look at mum, walked away and turned off the lights to her bedroom.

For the first time since I arrived home over two months ago, I cried. I really, really cried...