Hazy Update

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I’ve been meaning to write, just didn’t get organised enough to do so. Some ideas don’t bear closer scrutiny, and fall by the wayside. Anyway, here’s an update of sorts.

The weather has been mostly hazy. Grey and smoky. The sun, when we do see it, is an angry red ball. There may be one clear day every ten days, when the wind shifts. By my estimate, the forest fires should be done by the end of this month, and November will be better.

Mom is calm and happy. Occasionally we catch her doing something she shouldn’t, like trying to take a bath fully clothed. But all in all, we are managing. Conversations can be amusing or fascinating, or astounding. One example:

Me, holding a banana: What’s this?
Mom: Mango!
Me: No, no! Look again, what’s this? B-a-n-a…..
Mom: Mango!
Me: I know you love mangoes, but we’re out of mangoes. Here, have this banana.

Mom catches on to emotions of those around her very well. She is still sensitive though the words don’t come so easily. She knows who she likes, and who she dislikes. She’s consistent that way.

She’s nice. Affable. Totally accepting of what is. When she says, “I don’t remember anymore”, it is a statement of fact. She smiles as she says it. But she is clear, because underlying that and unspoken is, “Don’t even try to remind me. I don’t remember, and it doesn’t matter.”

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.

Geriatric Clinic

Come in, Aunty, sit over here. Now how have you been? You’re looking well.

Are there any issues? Any breathlessness? No?

Let me listen to your lungs Aunty and check your neck veins. Lungs are clear.

Now when was her last cardiologist visit? She never had one? Hmmm, alright. Is she passing motion daily? Stool soft, any straining? But nicely formed, like a banana, like this? Good, good.

Does she object to anything? Gets agitated, takes her medicine? Exercise?! She objects to EXERCISE?!

Aunty, you don’t want to exercise?! What do you do all day? Are there so many good shows on TV? I tell you what, every morning, when you get up, go to the window, and take a few deep breaths, stretch out your rib cage, ok? And in the afternoon, go for a walk ok?

You all take her down for a walk, ok? Can you do that?

Aunty, if you sit and watch TV all day, and eat and eat, and don’t exercise, your legs will get thin and over here will be very round. You will get fat and out of shape. So exercise, okay?

Haha Aunty, you laugh. You look very happy. Must go and exercise, okay?

You have any questions for me? No? Okay, see you next time.

Dementia Village

When my children were young, they used to play at running a cafe and set up everything – the toy teaset and cutlery, handwritten menus and bills. I was often corralled in to be a patron, and made to order and eat up and pay up. When I wasn’t available or wouldn’t play, they just made do themselves. It gave me a pang to listen to them play at life – and what would you like to eat? Any drinks with that? Here’s your food. Bon appetit! 

There is an award-winning home for persons with dementia somewhere in Europe. It has beautiful apartments and gardens, where the residents can walk about and wander without “escaping”. Laid out like a little town, in this dementia residence, clients can visit the supermarket, restaurant and hair salon. Well-trained healthcare staff dress up as shopkeepers and unobtrusively observe and aid the persons with dementia (PWD). Any unsuitable purchases or payments are tactfully rectified without embarrassing them, and often without their knowledge.

I couldn’t understand it. I am sure I wouldn’t want to live in an segregated dementia village, where I am kept safe but essentially locked in, and given the delusion of freedom and free will. It smacks of condescension and play-acting. I don’t think I would want that, although I’m sure it is the best solution for some PWD. I should reserve judgement though, who knows what I’d want if and when my mind goes.

Instead of putting PWD into a village, perhaps we should bring the “village” into the community. How do we do this? This video from UK (May 2014) suggests how persons with mild dementia may get by “with a little help from friends”. A story here from Japan tells of how an entire community chips in to look out for an elderly woman with moderate to severe dementia who wanders for miles daily.

In short, whichever solution we choose, PWD ought to be able to live out their lives with dignity and comfort in a safe environment. The same can be said for their caregivers.

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.

Baby Steps

Two steps forward, one step back. We do a little dance with dementia and frailty and bodily functions that disappoint. When we think we have gotten over the final hurdles and finally started on the road to better health, the road dips, and we stumble.

So at present, it seems we have taken one step back. About a week ago, Mom had an episode. A little weakness, a little confusion. A lot of consternation. Then followed a visit to a specialist, and an investigative procedure.

I came back after a short time away, and noticed the difference. A certain hesitancy, a reluctance to get up. Vague eyes. Fewer words. A drunkard’s gait.

Showers taken at unusual times, and repeated at hourly intervals. Medicines swallowed hours before they’re due.

My doctor friend encouraged vigorous and sustained rehabilitation. “Don’t give up, you must keep at it.”

So –

Let’s go for a walk, Mom.
Sit and rest awhile, Mom.
Let’s continue walking, Mom.

Raise your arms ten times. Let’s count, Mom. How many was that? Can you count louder? You must count. That’s Four. Keep counting. Five. Six. Seven. Eight. Nine. One more. Ten. That was slow, Mom. We’ll count faster tomorrow.