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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.

 

Forgetting backwards and forwards

My mother is forgetting, she is forgetting the past and she is forgetting new events as soon as they occur. I do not know if she knows she is forgetting, or maybe she just forgets that she forgets, or she does not wish to remember.

Sometimes she asks a question, and gets the following answer-

It’s the week after next, I’ve told you before. Why don’t you use your diary?

But she has forgotten the diary. How can she remember? She keeps quiet.

She forgot the passing years. Many times over the years, she remarked upon how quickly my children have grown. She said that even if we had just visited the week before. I thought she was making small talk, finding something to say, but… maybe she really had forgotten the recent visits, and measured them against a visit further back in her memory.

When she came to live with me, she thought they were still young kids, and reminded me not to let them stay out late. I discovered she thought they were about 6 years younger than they actually are. She asked-

Are you sure?

So to her, time stood still for 6 years.

Someone asked her-

How old are you now?

She became younger by 4 years.

The neurologist asked, How did you spend the New Year holiday?-

Oh, I cooked. I cooked 7 dishes.

I shook my head at the neurologist. She hadn’t done that for about 5 years. (I cannot be sure, I’m forgetting too)

He put her on a skin patch, for the Alzheimer’s disease. He says it might slow down her disease progression. I am doubtful, but I agree to give it a try.

It seems to help. She is more alert, tries to remember, practises handwriting, writes down notes. She speaks more, in fact there are more words than I remember for a long time. The packing and re-packing of her bags stops, or diminishes.

But she cannot remember having to put on a skin patch. Not once has she asked for it. We have to tell her it’s time to change it. The first few days, she looked at me blankly every time-

What patch?

The doorbell rings and the dog barks. She opens the door and sees the visitor, there to bring her for a walk. She waits because she has forgotten the routine. She is pleasantly and genuinely surprised each time she hears –

Let’s go for a walk.

But there is a good side to forgetting. The chip on the shoulder is finally brushed off. I see her live in the moment, and there are no regrets nor past grievances since everything is forgotten. I am sure she is aware of some change; she is careful before saying anything, in case she is wrong. She is agreeable. She tries her best. She is stoic, she doesn’t complain.

We do not speak of her memory loss. We do not reminisce. We do not discuss the long future. She trusts that we will do what is best. She believes she is fine.

 

 

Swimming for Life

When we were young, my mother wanted us to have the opportunities she did not have in her youth. So we all had to take a music instrument, and do sports. The sport she chose for us was swimming.

It took me many months just to put my head into the water and learn to float; but I had the luxury of youth and time. As Malcolm Gladwell said in his book on success, it takes 10,ooo hours of effort to become really good at anything. Because I was really young when I started, I became a competent swimmer but only just.

A lot of juggling was involved to make sure we went to the pool regularly for training, but mom took the responsibility seriously. The coach she engaged for us was a handsome young man – a Bruce Lee lookalike. He was actually employed as a lifeguard at the pool and coached us during his off hours. We stayed with him or rather he stayed with us for many years despite my mom not giving him any raise!

Coach encouraged us to participate in competitions, and there were so few swimmers in my small hometown, we did quite well. We also represented the hometown at national level championships, and at these championships, I often came in last or second last. As Coach said, it was all for the experience, and we will do better next time.

One of these races was particularly memorable; it was the 200m butterfly. It is such a long and difficult race to do that I tried to pull out of it. As usual, Coach would hear nothing of a withdrawal. Go do it, try, it’s a good experience, he said. Nevermind last, just try. You might get a medal. Yeah, fat hope.

Upon registration, I realised there were only 3 other girls still in the race, and they were miles better than me. I could see the 3rd best girl was relieved I was there to bring up the rear.

It was a fiasco from the starter’s gun. From the moment we hit the water I was 2 body-lengths behind the rest. They pulled further and further away. When I touched the wall at 150m, I could hear the crowd shouting as the other girls finished the race. I took a few more breathes and contemplated quitting there and then. But instead I turned, kicked off and started the last lap. My arms could barely lift out of the water, and my legs were slanting 45 degrees down; I had to switch to breast stroke kick. It was torture swimming that last lap alone while I could feel all eyes on me. My face was red and I was crying into the pool. I heard my team-mates shouting encouragement between giggles, but they soon lost interest. I tried not to look at the far wall (so far away!), but concentrated on the lane marking at the bottom of the pool, taking one stroke at a time. Finally, I was 5 strokes away, then 4, then 3, then 2, then 1 and then touch the wall with both hands. There was a smattering of applause.

The results were delayed, and when Coach ran back to tell me someone was going to be disqualified in my race, I thought it was me because I took too long to finish or did something wrong.  It was several minutes before I understood what he really meant. Someone else was going to be disqualified and I was going to get the bronze for just finishing!

I think the lesson here is that the best swimmers don’t necessarily end up with the medals. There were several girls better than me who were entered but pulled out because they thought they had no chance for a medal. Sometimes the rewards go to those who doggedly hang on and don’t give up. My mom and Coach are like that, they don’t give up, and they didn’t let me. A very important lesson in life.