So Lucky!

Mom had to visit the Emergency department one night, as she wasn’t doing so well and needed something stronger than oral antibiotics. Fortunately, the hospital was working well, and we were being seen by a doctor within half an hour of arrival.

He was a young doctor, and even if he wasn’t, he spoke as though he was very young and haven’t seen much of the world. After we told him what the problem was, he turned to the electronic record and was apprised of Mom’s multiple issues.

“Wow!” he breathed, “Aunty* has been through a lot! Do you know how lucky she is to be alive? The condition she had, you know, many people die of it. She’s quite lucky!”

I couldn’t stand it. “Well,” I said, “we take good care of her. And you’re lucky we’re not suing the hospital for missing the condition in the first instance.”

Young man, it may be your first time seeing us, but we’ve been to the hospital countless times, and if we didn’t know better, Mom would be a lot worse off.

Having said that, I’m very pleased with the treatment at this hospital for Mom all these years. Whenever she’s admitted, I get daily updates from the ward doctor, a medication check-up call from the Pharmacist on duty, and a post-discharge follow-up call from the nurse. Most times, things go right. Yet, I believe more than ever that the patient and family must take overall charge and not leave it to the “professionals” alone. Patients are living longer and with more complex and complicated conditions. We just have to help ourselves.

 

*Aunty is a generic way for addressing older women by respectful younger folk in our region.

Forgotten, in a manner

Mom was admitted to hospital for a brief illness, and I was visiting her.

“Hello, how are you today?”

“Hello. My daughter just went off.”

I wasn’t expecting that. “It’s me. I’m your daughter, Mom.”

She looks uncertain, and then, “No,” she says, “My daughter, she just went over there. Can you go and get her?”

I knew she had an earlier visitor, but hadn’t realized she thought that person was me, or so I hope, if she still remembers she had a daughter like me. So I decided to go along, “Oh, she’ll be back in a while.”

It’s really strange and unexpected.

At home, we never go to Mom and ask her, “Do you know who I am?” We assume all is fine if we get a cheery Good Morning! or Hello! The routine exchange of greetings, the signs of familiarity, the ease with which Mom navigates to her regular chair; surely all is well.

Or maybe the problem isn’t Mom, but me. Maybe I’m forgettable. Really.

I once went back to a workplace after a gap of a year. There were a few familiar faces at work that day, but they could not recall me. “Did you work here before? When? Really? No, we can’t remember you” they said. It gave me a turn and my heart pounded. I had a fleeting thought of “Twilight Zone” and then I wondered if I had caused offense and was being purposely “forgotten”.

On thinking back, I think it could be because I was task focused and did not get to know these colleagues personally, or they were task focused and did not see me. Or the turnover of staff was so high that those who stayed did not bother to keep track and remember those who had left.

Whatever, I think I can accept being forgotten. It’s the forgetting I’d rather not have.

A New Conductor

The Geriatrician wrapped up my mother’s first consultation with him by asking me, “So, when would you like the next appointment?”

I thought quickly. He was a very busy Consultant and only took on Mom’s case after some urging by his colleague. That day at the clinic, we had waited over an hour to be seen as he had many patients and was running late. So I said, “I think six months should be alright.”

“Six months?!” he laughed and turned to Mom, “Aunty, I will see you again in six months, and I hope I don’t have to see you sooner than that!”. So he thought I was being a bit too optimistic, but he went along with me, and said we could call for an earlier appointment when needed.

For the past few months, Mom had been seeing 4 different specialists for the various medical ailments she had. Although dementia can be overwhelming on its own, people with dementia can and do have other medical problems. The only reason Mom wasn’t seeing 5 specialists instead of 4 is because the appointment for the 5th was overshadowed by emergent events and nobody remembered to put it back.

Each of the 4 specialists were intent on treating their own organ issues, without seeing Mom as a whole. For example, two specialists wanted Mom on anticoagulants, a third wanted it stopped. At times, I went a bit nuts. Particularly at the junior doctors when they call me to let me know what was happening. You want to what? For what? Can you call the other specialist and make sure he is okay with that?

So that is why we added a Geriatrician to the mix – someone who can see Mom as a whole, review what’s best for her overall and help us decide which medical ailments get priority. We need an orchestra conductor instead of multiple soloists each playing their own tune.

Ready Steady Action!

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At last something definitive is being done…

I complained to the specialist (who really was seeing Mom for the one problem, but I made my complaint general) –

Mom hasn’t been truly well since her discharge from hospital several months back,

We keep thinking she’d get better, but she continues to lose weight and weaken,

Now she has fever for more than a week and is not responding to antibiotics, and her words are getting fewer and more confused, what could it be?

And the good doctor said –

That wouldn’t do. I recommend an admission so that we can sort it out and find out what’s really happening, and start intravenous antibiotics.

And that’s why I spent longer than a workday in the hospital – from blood tests to the consult to the admit. Wait here, then there, then over there. (And in between the waiting, we viewed the Christmas decorations, and took a photo of Mom in a wheelchair next to a Christmas tree).

And so at last something definitive is being done. Or so I hope.

I’m sure.

Recuperation

The title is hopeful and optimistic, and that is how I feel.

Mom was very weak upon her return from hospital, but I’ve never given up hope that she will recover her strength. She’s not so sure, and has been looking rather down and has a “giving up” attitude about her. Today I spent some time working through her exercises – it was only less than 10 minutes but she got rather tired. I kept reassuring her she will get better if she keeps it up. Living in the moment, she seems not to be able to imagine a future when she is strong again.

I look forward to bringing her for a walk outside in the coming days, and hopefully we can manage a meal outside in a couple of weeks. Sure we could probably do it now with a wheelchair, but that’s a compromise (or lazy solution) I think we can avoid for the moment.

There is a Buddhist lesson I read about being grateful for a non-toothache. Think about it – a toothache is a body-enveloping misery centred around a pain in the middle of your head. It hurts to breathe, to speak, to swallow. The throbbing interrupts your every thought. Yet… everyday we go about when we are not having a toothache, we don’t give our teeth a second thought. We don’t value our healthy teeth until something goes wrong.

Everyday of good health Mom had before this crisis was a blessing that we enjoyed without a second thought. When she was in hospital, it’s funny but the things I missed about having her at home were the things that used to annoy me – the TV being on for hours and too loud, the water gushing while she washed, the fan spinning in the living room while she took a nap. It then occurred to me, these petty annoyances are preferable to the alternative.

 

Reprieve

Mom is out of ICU. She was only in there for less than 48 hours. Here’s keeping our fingers crossed and hoping for a steady improvement until she comes home.

The good thing about having short term memory loss is that she cannot remember the difficult and trying times she went through. 🙂

There are many other blessing too… I’ll leave the counting for another day. Meanwhile, this is a very short post as I’m going back to the hospital for a visit.

The Retrospectroscope

Mom was admitted to hospital last weekend. She was ill for a couple of days, and we thought she was getting better. But she got worse all of a sudden, and we admitted her to hospital.

In hospital, tests were done, and urgent treatment instituted. She made improvements – not as quickly as we expected, but nonetheless… again, we thought she was getting better. We were wrong. This weekend, she got worse “all of a sudden”, and now she is in ICU.

They say hindsight is 20-20. And it’s true! It is so clear the clues were all there, how could we have missed them. They were so obvious!

Part of the answer must be wishful thinking. We paid attention to the signs of improvement, and denied the danger signs hinting that things were worse than expected. We told everyone and ourselves that mom was improving, and promised her she would be home soon.

Only now, when we apply the retrospectroscope, we realise how wrong we had been.

And isn’t that how we live out our lives? We move forward, and suddenly something happens and our world view is shattered. What happened? Were there warning signs? Why did we miss them? If we were honest, we might see that we had ignored twinges of discomfort, preferring the illusion that all was fine.

That is how it is with me, anyway. I prefer to err on the side of being positive. Look on the bright side, things aren’t so bad, count your blessing etc. But I’m trying to change this, and to learn to face reality in all it’s dimensions. I’m learning to be still, to centre myself… to observe, and to accept. Life is real, it can be painful and unpleasant, and to be truly alive is to know that such feelings exist and face them.

And the reality is – over the last week while mom was in hospital “getting better”, I had not been able to relax or sleep well. Some deep part of me must have recognised the unspoken reality that she was more ill than we all acknowledged. But now she is in ICU, and definitive treatment has been undertaken. She is stable for the moment. More importantly, we have really done all we could. I think I will sleep well tonight.