Parkinson’s Disease

A dear old friend with Parkinson’s disease shared how the disease affected him. He could not move as he willed and sometimes froze unpredictably, and this affected his ability to walk and to eat. His handwriting has changed, becoming much smaller and less legible. Fortunately, he is able to type text on his phone and use his computer.

Mostly, he feels the loss of easy speech. Speaking is difficult, and speaking clearly is even more difficult. He explained that he makes a lot of effort to speak because if he doesn’t, his mind will shut down, because what’s the point of thinking if you have no means of expression? (If a tree falls in a forest and nobody’s there, does it make a sound?)

I started thinking about persons who have somehow lost the ability to speak, such as persons who have had strokes. How frustrating and lonely it must be not to be able to communicate, not to be understood. No wonder some persons with stroke end up depressed and withdrawn. It is a human need to be part of a community, and not being able to participate in conversation must be very isolating. In some strokes, as in Parkinson’s, the mechanical difficulty of speaking interferes with the process of communication, and such persons are still very alert despite not being able to express themselves. Their thoughts swirl in their brains, with no outlet.

In dementia, on the other hand, often the ability to remember and process thoughts occurs first, and the person is still able to communicate. I remember Mom making things up to hide the fact that she cannot remember. Her lies and confabulations flowed fluently. Later on, when her thought processes became more confused (although she did not realise it), she was speaking clearly enough to convey the confused logic to us. It was at this time that she would make up new words to replace words she could not recall.

Now, dementia has affected¬†both her ability to think and communicate in equal measure, so she seems fine. The other day, she mentioned that her memory isn’t what it used to be, and she has forgotten lots of stuff, but she did not seem too bothered by it, and accepts it as just the way things are.

 

Advertisements

Grape

I offered Mom a sweet seedless grape.

Would you like one, or two or three?

She held out her hand laughing, signaling yes, please.

Now what do you call these?

She laughed even more.

What’s this?

More laughter.

What’s this fruit?

Apple, she finally offered.

Nope, these are grapes.

She didn’t deign to reply, just ate her grapes.

Dementia Artefacts

Mom lives in the present and is happy and contented on the whole. I think she lives fully in the present moment, with no worries of the future and no grudges of the past. She remembers little of her past anyway and not remembering doesn’t bother her.

Some others with dementia may suffer from memory tricks where the past is bright and clear, and the present foggy and confused. Such persons seem to be living in the past. They may talk about long dead persons as though they were still alive, and want to “go home” to another home which no longer exists. They are restless and disoriented.

To address disorientation, sometimes caregivers put out artefacts to trigger memories, conversation or even just to provide a familiar welcoming setting. Replicas of homes and items are recreated or purchased and displayed with fanfare. Personally I don’t think it works that well, because no recreation hits the mark for everyone, since everyone has a different past! National Museums Liverpool must be commended for curating items that suits a persons particular past, into a memory stimulating suitcase full of selected items. Do look them up.

Here I’ve cobbled together some examples of dementia care scenes in Singapore:

Cupboard of Items
Bigger than a suitcase, and it doesn’t need to fit into a scene. A useful way to introduce lots of artefacts in a small space.
Rustic Scene 1
Though not everyone with dementia grew up in such surroundings, this is still a very peaceful scene.
Rustic Scene 2
Hope the monkey doesn’t disturb anyone!
Home Setting
What a home might have looked like in the 1960s give or take 15 years. Mom would feel distressed in a place like this, because she would think she was a guest, and know that this is not her home.

Reading Comprehension

Mom got a letter, and she read it to herself.

Read it to us! we said. Can you read it?

She laughed, Of course I can! I want to know if you can read it!

We said, But we want you to read it to us. Read it aloud!

And so she did, with a loud clear proud voice she read the whole letter, hesitating over words she could not decipher. Yet she could remember the pronunciation of names that were not English, and said them correctly.

When she finished, I asked her what the letter said. And she told me what she understood, passage by passage, reading again from the letter to remind herself what it was about.

I would give her 50% for reading comprehension.

  • She knew what a sentence meant, even when she could not remember the event it referred to
  • She knew most of the people in the letter
  • She was happy to read the letter, recognising it was written with love

It doesn’t matter the parts she did not seem to understand, which were the parts referring to the passage of time, someone’s accomplishment, or illness, or future plans. She seemed not to recognise the significance. Or she might have understood after all, and I didn’t see it.

 

Facing Dementia

Last year, a Singapore documentary maker filmed a short series called Facing Dementia, spurred on by his experiences with his mother. Galen Yeo interviewed persons with dementia and their caregivers, giving a poignant view of the struggle to live with dementia and the available support in Singapore.

Some memorable people in the series:

  • A woman acting violently towards caregivers because she didn’t like what was going on,
  • An artist expressing his feelings as a caregiver for his mother through visual art,
  • A woman with young onset dementia who lost her job and stayed home until she was properly diagnosed and started on dementia day care,
  • A retired man with dementia who was living as well as he could and making plans for his future,
  • Persons with dementia and their caregivers experiencing a support group.

Every person with dementia has a different journey, and the series portrayed the variety of challenges faced. Some of the persons with dementia were able to afford and hire caregivers, others were reliant on family members, some of whom had to downsize their careers.

I strongly recommend this series for anyone (especially in Singapore) who wants to know about dementia and the treatment and support available. Singaporeans are at a higher risk of dementia than the developed Western world, for reasons that are not obvious.

You can watch a 10-minute trailer on Galen’s mother here:

https://www.channelnewsasia.com/news/video-on-demand/facing-dementia

The same page has links to the other 5 hour-long episodes which are:

Episode 1 – Do I Have Dementia?
Episode 2 – The Long Road Ahead (about young onset dementia)
Episode 3 – Caregivers and Loved Ones
Episode 4 – Beyond Medicine
Episode 5 – What the Future Holds

If you prefer Youtube, see the link below:

Exercise

Mom hates to move about, she has become very fond of just sitting. She still walks around the home and is mobile, but is becoming increasingly stooped. Getting up from her chair takes long moments of concentration to coordinate the right movements and exertions.

After an attempt to bring a physiotherapist to the home to engage her in exercise, I realised it wouldn’t work. The physiotherapist felt she was still alright, and encouraged us to get her more active throughout the day. Scheduling exercise with a professional might do more harm than good if we didn’t do anything in between sessions.

So here we are, trying to staunch the decline by exercising Mom 5 minutes at a time (*contrite expression*). I’m still figuring the best things to make her do, the most “value-for-money” movements – for example, half-squats seem to be particularly effective, and she is getting out of her chair a little quicker. Stretching upwards several times improves her posture within minutes.

Mom finds it funny and often giggles and laughs, which is good breathing and abdominal exercise, so I encourage it. She has lost the coordination to be able to “blow out a candle”. I shall practise that next.

Don’t Tell Me

Mom used to be very vehement about this – Don’t tell me what to do, I will decide for myself.

Isn’t that so true for all of us?

Case in point, a colleague asked me to join the group for lunch saying, “Don’t be so anti-social, you really want to eat with us.” So against my initial impulse I went along, and was nice and social, but I felt out of sorts after that. I had forgotten an errand I meant to do.¬† When we don’t choose what we do and just go along, it affects us, whether we realize it or not.

For some reason I’m reminded of the time I went apartment hunting and met all sorts of real estate agents, the good and the bad.

Not bad, but I didn’t like the apartment as a whole

I would say if I didn’t like the place, and I would get different responses from the real estate agents.

The good ones said –
What don’t you like about this place?
What do you think about the location?
How does the layout suit you?
Do you like a high floor or a low floor?
Are you okay with this price range?
How about next week I show you a few more according to your taste and preference?

The bad ones said –
Why not? But this is very good! This is excellent!
It’s not noisy, I don’t hear anything. You’ll get used to it.
For your budget this is what you get.
What you want doesn’t exist.
You can refurnish how you want and it will look fine!

Well, don’t tell me!

Mom is much more relaxed these days, she no longer insists on making decisions. You choose for me, she would say. She would put on the clothes we lay out, eat what we prepare, watch whatever TV channel is on, go where we bring her. She’s happy with the world.