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.

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Frailty

Mom has not fully recovered since her hospitalisation some months ago. In fact, we seem to be caught in a vicious cycle of repeated bouts of illness and weakness. At the most, she is well for a week, and this cheers us up as we embark on exercises and sunning and making plans for excursions. Too soon, however, her next infection will be upon us.

Sometimes it starts with lethargy, and she cannot finish her food. She starts to slow down and shuffle. Oftentimes, she ends up sitting on the bathroom floor, unable to get up.

But she cannot tell us she is not well, or that she has slipped onto the floor. Instead she says she is Okay. We have become detectives to spot the early signs of illness. Is Mom wrapping herself up as though she is cold? Does she tremble a little more when she walks? Has she stopped smiling? Has she stopped talking? Just the other day, she did not return my greeting when I came home – she glanced at me and looked away mute. It was as though she couldn’t hear me, and then couldn’t see me.

Out came the thermometer, BP set, and then the antibiotics. Dinner plans are canceled, family members called to standby. I dread the possibility the antibiotics do not work.

So I learned a new word recently – frailty. As used by healthcare professionals describe the condition of old persons who are declining. It is defined by weight loss, increasing debility and inability to fight off simple infections. Mom doesn’t quite meet the definition yet – she is maintaining her weight (barely), and she does recover her strength between infections (somewhat).

Already, I have made plans for what I will do differently when Mom recovers from this episode of infection, her second this month. I’m not ready to give up hope yet. “Frailty” is not here, but I sense him near, perhaps just around the next corner, waiting. I hope we can keep him away for a long while more…

And the years fly past

While looking for a photo to use in my previous post (the Photo Challenge), I chanced upon a photograph of Mom taken almost 5 years ago.

The difference is startling.

Then – she was standing in her own kitchen, her hair dyed black, laughing at a joke and looking into the camera. At that time, she was no longer driving, but she took the bus around, and her kitchen was stocked with food items she had bought herself. The house was clean, though there were plenty of things lying about. Little knick-knacks, plenty of half-used pens and stubby pencils, stacks of this and that – just in case these items were required some day. She was a bit of a hoarder.

I remember being a little concerned about a change of personality and conversations were kept to simple topics; complex ideas could not be conveyed. She was vague about whether she had paid some bills on my behalf.

Today she is but a shadow of that person almost 5 years ago.

And I recall the advice I was given when Mom was diagnosed with dementia –

Enjoy your Mother, enjoy her now.

Good advice to follow then. Good advice to practice today.

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.

Passing it On…

A few days ago, I received a surprise when my blog readership jumped, and realised quite a number were coming over from Alzheimer’s Wife – a blog from a beautiful person about her caregiving journey. I went over to check and found Nancy had received an Award and was nominating me as a recipient! Thank you Nancy, for honoring me 🙂 I am very inspired by your openness and willingness to adapt to life’s challenges. You found a way to bring Bo home and provide the caregiving family with a home too!

vib-award

                                                                                                                                                           

This is an award that we pay forward — honoring the bloggers whom we follow and who inspire us. Here are the rules:

Thank and link to the amazing person who nominated you.
List the rules and display the award.
Share seven facts about yourself.
Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
Proudly display the award logo on your blog and follow the blogger who nominated you.

7 facts about me
1. I live in Singapore
2. My mom has been diagnosed with dementia
3. I have healthcare work experience
4. My favourite authors are Asimov, Philip K Dick and Margaret Atwood
5. I hate housework
6. I have a weak green thumb – half my plants die, and half thrive
7. I use mindfulness to cope.

Blogs I nominate to receive the award – please go check them out!
1. Not Forgotten
2. My Neighbour Miss D
3. My Dad is a Goldfish
4. Truthful Loving Kindness as Dementia Patient
5. Jan’s Reflections
6. DownJersey North Country
7. A Journey with Mom
8. Lewy, Momma and Me

Holding Steady, Somewhat

Mom’s neurologist thinks she is doing rather well, considering. I think the picture is rather more mixed. She can recall her daily activities more readily, and converse easily with a visiting child. Sometimes she sounds almost the same as many years before.

Yet there are small changes, noticeable over the last 18 months. A slightly more pronounced shuffle, and a little less steady when bending down. Getting out of the car takes longer, and a lot more effort and deliberation.

There are fewer TV channel changes. More staring out of the window.

Still knows the days of the week, but the hours pass more randomly for her now. Errors in self-medication happen two to three times monthly. Fortunately, because of the pillbox we use and the nature of her medicines, there is little danger from these minor errors.

And she keeps track of the comings and goings at home. Who’s at home, who went out, and who came back too late (or didn’t return).

She keeps her food close, and keeps some aside when she thinks I’m not watching… Accumulates empty bottles and food containers, and old toothbrushes…

Looks forward to the dementia day care. Looks forward to the telephone ringing.

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