Shrinking world

She forgot herself, her old job, what she used to do.

Did I really work?

Did I do all that?

She forgot her relatives, confused her siblings with her children.

She forgot her in-laws, knowing they were still familiar.

She forgot her children, forgetting she is a mother.

She forgot her husband, perhaps not surprising, he’s been gone many years.

She forgot her grandchildren, doesn’t recognize them.

She remembers how to eat, how to go to bed, how to rise in the morning.

She remembers how to wash herself, though she confuses the shampoo with the body wash.

She remembers numbers, but just barely gets up to ten.

She remembers to smile and she smiles often, everyday.


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.

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.

Reality Check

Mom is back from hospital, and physically she is much improved. No more fever and no more falls. But that’s about it. She isn’t physically up to where she was a few months ago, and mentally, her dementia seems to be progressing.

We could almost see the Words fade and disappear. We sense the Meanings of words shape-shifting.

She has forgotten her birth date. She can no longer sign her name because she cannot grasp the order of her first, middle and last name. She has definitely forgotten her age – she used to be able to name the decade, but now she is completely off. Or maybe she no longer has any sense of numbers.

She is poetic, though. “The Rain falls like a Lump from the Sky”.

She gets up in the morning, and goes to bed at night. I remind myself to be grateful for that! Enjoy this while it lasts.

She can still make her breakfast, but she often has no appetite, and throws it away. She eats very little now, but because she is so sedentary, she is not losing weight.

And we? We are mostly in denial. Surely these changes are reversible? If not completely, then somewhat. We will step up the exercises, and stimulate the neurons. Grow, grow! Make new connections! Then maybe the Words will be back.

Mom is still Mom. She knows who she is, and she knows who we are.

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.

Not anything

I was struck today by a change I saw in Mom. This happened at dinner time. Before I tell you what the change is, let me describe what Mom was like a year ago.

I would ask, “What would you like to eat?”. There would be a short pause, and I could see her expression as she struggled to think about it. In the end, the usual answer came, “Anything. Anything will do.”

It got to the point I would automatically give her two or three choices, just to avoid hearing “Anything”. With the choices, she would choose one or the other, almost at random. It seemed she could barely remember the two or three choices, and would grasp at one, and choose that.

After a while, I stopped asking, and decided for her instead. Let’s eat this, or that. Mom would be quick to agree.

Today, however, there was a change. A big change.

I brought her to a food court and asked her what she would like to eat.

She paused to think, and looked around. As usual, I prompted. “Rice of Noodle?” Noodle, she replied without hesitation, and she told me which type – beehoon, or rice vermicelli. I looked over the stalls that were open and told her there’s no beehoon here today.

“In that case, rice,” she volunteered. She answered quickly when I told her the types of rice dishes available, and she mostly said No, firmly. In the end, I took her to the variety rice stall, and let her pick out her dishes. She chose one vegetable confidently, and agreed after consideration when I suggested another two.

You might not think it much, but I find it a huge improvement from “Anything!” She did not say “anything” a single time while we were deciding on dinner.

We must be doing something right 🙂