Do I know you?

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One very poignant passage in Wong Chai Kee’s memoir of his mother’s descent into dementia sticks in my mind. He writes about visiting her one day, and being greeted and invited in very pleasantly. They sit and chat, and he hands her some money as he usually does. She accepts it and thanks him rather formally. He found the experience rather surreal but they continue chatting, and suddenly she gives a start of recognition and says… “Oh, you’re my son!”

She had not recognised him until then. She knew she had a son, but she was not able to put two and two together that the man at her door who came in and gave her money, was indeed her son, until some time had passed.

Other examples are of women who forget who their husbands are, and insist the man they see in front of them is not their spouse. Perhaps they cannot remember what their husbands look like now, and are recalling instead a younger image in their minds.

I had a similar experience of being temporarily forgotten; mom spoke to me as though I was someone else and announced “My son just went home!” when I walked in the door.

I like to think I was not forgotten. Maybe just for that little while I was not properly recognised for who I was. There is a condition called prosopagnosia, which refers to the impaired ability to recognise faces. Apparently, we all have different facial recognition abilities, and the worst ones amongst us are practically “face blind”. There are online tests to help evaluate this – here’s one. Even without the test, I knew I was not going to be great at it. I never recognised Madonna from one remake to the next when she changed hair color, hairstyle and makeup.

If we think of dementia as the gradual loss of discrete abilities as different parts of the brain is affected, then the loss of facial recognition could be just one amongst many losses. Loss of the names of things apparently happens fairly early. Mom would say “troller” instead of “trolley”. When she forgot the word “thunder”, she said, “that loud noise that hit the ground”, smashing her hand against the other palm.

Accompanying the loss of names of things and people is the loss of meaning. The loss of the connections between things. Failure to understand money, a lack of judgement, choosing inappropriate clothing. Complex ideas are simplified. Disjointed ideas may be connected up in inexplicable ways.

Dementia has been described as brain atrophy where there is loss of brain cells. Such loss may result in “holes in the brain” in areas representing specific brain functions such as the names of things. The holes may also interrupt the connecting neuronal highways that link faces and meaning. The detour past the holes and the potential misconnections mess up messages and create confusion. As mom once said, “I cannot go to the US until the later part of the year because of the Southern Hemisphere winter”.

The physical representation using holes and tangles in the brain does not explain everything we see in dementia though. It cannot explain why there are fluctuations of ability from day to day. Nor can it explain why medications seem to help. There’s probably something going on in the brain chemistry that varies from day to day and can be affected by drugs.

To summarise, the reasons for not remembering people in dementia could be due to:

a) loss of short-term memory and forgetting what the person looks like most recently

b) loss of facial recognition or loss of ability to “see” in 3-D.

c) loss of total memory

I am convinced the cure for Alzheimer’s and most dementias is pretty far away. Until then, I will constantly look for spiritual ways to understand and cope with the changes in mom so that we can all lead as meaningful lifes as possible.

 

Post-script: The portraits above are of Hong Kong actor Chow Yun Fat at different ages and settings. Hope you noticed they are the same person. 

 

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Bright Mornings

It is too easy to think about what my mom cannot do anymore. Make a list, and lament. But, there’s much to be grateful for. For one thing, how mom is so cheerful in the mornings. The following is a typical morning:

She wakes herself up, anytime between 6.30am and 8am. Goes to the bathroom. Folds her blanket up.

Makes her bed and changes her clothes. Cleans the floor with a wet rag. Switches on the TV.

Hum a little tune.

A special effort to greet me, singing, “Good Morning!” (She doesn’t hear me if she doesn’t see me, but when she sees me, she greets me).

Then she gets her own breakfast.

Makes a cup of tea. With too much sugar, I think. The sugar runs out faster these days. It’s okay.

Gets a large plate, and makes a sandwich with butter and kaya. Cuts up her sandwich into 9 squares. I’ve stopped asking her why. It’s okay.

And she savours her sweet breakfast.

It’s a good morning. It will be a good day!

A Safe Place

I attended a class on building dementia facilities a few days ago. It was eye-opening and sad at the same time.

Sad because I have just realised that in Singapore, we have homes for patients with dementia, but by and large, they are for the poor and destitute. Living conditions are not ideal, some would say even awful. (Here’s a picture of a typical nursing home.) A group of dedicated advocates is trying to improve on the situation, hence the class.

Most people keep their dementia parents at home, and try to cope. Basically my home is now the assisted living facility for my mom. I have a helper who comes in daily to cook and clean. This works because at this point in time mom is still fairly independent. She can be left alone at home for a few hours, while she reads, watches TV, writes in her notebook, and generally looks after herself.

I don’t let mom cook, partly because I think she has lost the ability, and also because I don’t want her to learn how to turn on the gas stove in my house, having read about the dangers looming in the future.

The eye-opening bit in the class was this – we were given a scenario where someone new has come to work in the facility, and she has never interacted with anyone with dementia. We were asked to explain to this new employee the most important things to know in dealing with dementia patients.

As the class described what they would say, the most important point that came across was, Don’t Argue.

– don’t argue, listen and try to understand

– validate and don’t argue

– look them in the eye when talking to them, treat with respect, and don’t disagree.

– speak in simple sentences, don’t lecture, don’t argue.

The other useful thing that I learned was that if the toilet was visible from the patient’s bed, they will use it, and it greatly reduces the incontinence problem. Now I have been considering some home improvements, but having the toilet fully visible from the living space is not possible in my home. I will cross that bridge when I come to it. Maybe leaving a toilet light on at night will help.