One day, I decided to be brave and brought Mom out to lunch. It was special because Mom only heads out for medical appointments nowadays. (How did it come to this? Let me think about it and cover this in another post)
Anyway at lunch I put her to the test – and asked if she could still count. Yes, she could! From one to ten, and then backwards form ten to one, more slowly and with slight errors. She could add single digits, but when I asked her to minus, she couldn’t do this anymore. Ten minus eight is “I don’t know, eight?” Three minus two is… “???” She just couldn’t do it. She knew it sounded easy and was just as puzzled why she couldn’t manage it.
About 6 years ago, when I first brought Mom for screening because I thought she had early dementia, Mom could minus 7 from 100 all the way down. The tests pronounced her normal, but we knew she was already different.
She can no longer tell her own age nor understand who’s older or younger. But she loves a birthday cake and song, and happily joins in no matter whose it is.
Early in the flight I heard the stewardess checking on the dietary requirements of the passenger in front of me. “Hello, Mr K, I’m confirming that you requested a vegetarian meal?” “No no,” he said, “I didn’t make any request.”
“Are you Mr. K? It says on your ticket you need a vegetarian meal?”
“No no, I didn’t make any request.”
“Okay, can I bring you a vegetarian meal? Will you have that?”
“No, no. I don’t want vegetarian.”
“Are you not vegetarian, can you eat meat?”
“Yes, anything is okay”
“Would you like me to cancel your vegetarian meal and get you a normal meal then?”
Half an hour later the lunch cart came round and a different stewardess asked, “Pork or chicken?”
“I can’t take that”, he says, “I’m vegetarian!”
And the stewardess says, “Did you request for a vegetarian meal? There’s no sticker on your seat for a special meal. Ok, let me check with my colleague.”
As she goes off to check (thus delaying MY lunch), I was incredulous at the behaviour of the chap. Was he forgetful or plain bad at communicating or a sociopath out to create trouble?
I started this blog over 3 years ago, to have some sort of record of Mom’s progression with dementia. Nonetheless, if I were to look back and read through what I’ve written, the progressive losses would not be obvious at all. Most times things change very little from day to day or from week to week. The pictures tell a different story though. Just looking at the pictures from a few years to a few months ago, and the contrast with reality today is stark.
4 years ago –
Mom is still living on her own, quite independently. She tends to overpack for her holidays, perhaps because she cannot quite remember what the weather will be like.
3 years ago –
Mom is living with me. She needs reminders to take her medication. She is over-friendly with strangers, and sometimes very fierce towards little children. Long walks start to tire her out.
2 years ago –
Mom is super observant, because she is now watching and copying what to do. At mealtimes, she copies my movements. She can still hold a conversation with some of my friends, and ask questions. She enjoys Dementia Day care. She tells me off, “I don’t like what you said just now”.
1 year ago –
She starts to be physically unwell. Climbing stairs becomes quite difficult. She starts to lose her appetite. Arguments start because she has forgotten what she did earlier in the day. Says, “Why do you ask?”
She is housebound, needs help with bathing. Eats with one utensil and one hand. Doesn’t like to go out, but smiles a lot. Says, “What to do? Life”. Frequently says, “I don’t remember already, so long ago.”
I see an old colleague in the cafe near the office. She hasn’t been well, I heard. Getting forgetful.
I join her.
Hi, Rachel, remember me?
Oh, hi! What are you doing now?
Same old, same old. What about you? What have you been up to these days?
Oh, I’m giving it up. I’m going to stop it all. My last position, volunteering at the hospice… It will end in two months.
Really retiring now, finally, eh? What do you really look forward to?
Er.. reading. It’s so important. To read a good book.…. Say, what are you doing nowadays?
Just the usual …. What are your plans the rest of today?
After this, I’m going to the bank. And then… I’m going home. Next week, I’m taking a holiday.
That’s fantastic. Where are you going?
To Malaysia. Be close to nature. I find it… refreshing, really refreshing. You know, this place, really difficult to find the way. Bad design.
Yes, there’ve been a lot of changes. New shops. It doesn’t look anything like what it used to.
Look, let me not hold you back. Can I walk you back to your car? Where did you park?
The usual place. Level 2.
I was getting really concerned. There are no carparks on Level 2.
Do you remember which lift you took?Look, I’ll bring you down the lift nearer our offices. We’ll start looking there.
We found her car ten minutes later and she drove off. I looked after her with concern. What will she do? Who will look after her? She didn’t have family and lived on her own. Probably her friends will have to band together. I made a mental note to look them up.
When I first noticed Mom’s personality changes a few years back, I wondered if there was more to it than just a mellowing with age. There was plenty of news about dementia and its early symptoms, which put me on the alert. In spite of my suspicions, Mom was not officially diagnosed with dementia until last year, when it had become painfully obvious to me and others that her abilities had markedly declined.
Generally speaking, Mom’s symptoms were a change of personality from something else to simple and cheerful. From being particular, she became easygoing. Though at times, she would anxiously call about things being missing, and one of us would have to go and find whatever has been misplaced. It also seemed conversations became much simplified and complex ideas could not be understood. So there was memory loss, personality change and also a loss in ability to manage complex functions.
So for the few years while my suspicion flared off and on, Mom was managing on her own, and in retrospect we might have done better. Mom’s dementia is a combination of Alzheimer’s and vascular dementia, and by the time she was diagnosed, the brain scan showed multiple old strokes. Such strokes might have been reduced had Mom taken her medication for hypertension and high cholesterol regularly. In fact now, one year after her diagnosis, she seems to have stabilised (touch wood) and I attribute this to having regular meals, regular medication and less anxiety overall.
I have an acquaintance whose father had been getting more forgetful for the past 10 years. He would typically repeat his questions, forget where he was and what he had been doing. Nonetheless, the family just put it down to old age and did not seek treatment, believing nothing could be done. Lately, he started having difficulty walking and adding two and two, and so finally a brain scan was done. This showed a shrunken brain with multiple old strokes all over.
I know it is said there is no cure for Alzheimer’s dementia. But Alzheimer’s is not the only type of dementia there is. Sometimes similar symptoms are caused by depression, thyroid problems or other issues in the brain such as strokes. Some of these can be treated and managed.
A year ago, I had believed Mom could only go downhill inexorably. Time has proven me wrong, and I am grateful for all the people around me who have rallied to help me look after Mom.
My point is – if someone is showing early symptoms of dementia, have it looked into. It might be treatable.
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.
We teach young children to count. We have two eyes, one nose, one mouth, two ears. We count on little fingers, and we count off little toes. We count sweets and cookies and green peas. We count the seconds off when we play hide-and-seek. We teach counting rhymes – one two buckle my shoe.
Counting gave her satisfaction and pleasure. And she still enjoys counting…
When we came back from Japan, she was asked if she enjoyed the trip and what she saw. She said – we passed through 9 villages in the train.
And that is probably true, though nobody else had counted them off! She might have counted the train stops as we went pass, or she might have just counted the names of the stations as the train announcer made them.
The announcements were very regular and clear – this train is going to Sapporo. It will be stopping at Otaruchikko, Asari, Zenibako, Hoshimi, Hoshiako, Inaho, Teine, Innazumikoen, Hassamu, Hassamuchuo, Kotoni, Soen.
A couple of weeks ago, I came home with a few new potted plants. She enjoyed counting the new pots.
She cannot remember how much things cost. She can no longer remember her own age, nor her children’s ages. But counting is still easy and fun to do.