OLYMPUS DIGITAL CAMERABack when I was young, we had a couple of mango trees in our yard. They didn’t fruit all that often, but when the combination of weather and fertiliser was right, they would be covered with mango blooms. If our luck continued to hold out and we remembered to cover the young fruit with newspaper, the trees would be laden with luscious mangoes, to be shared among friends and family. Of course, the birds and worms would get the ones we missed, and there were also the passing strangers who helped themselves from across the fence.

Nowadays at the supermarket, I have to shell out good money for mangoes, imported from Australia, Pakistan, Thailand. We almost always have some at home. Mom loves them.

So when one night Mom took off for bed too soon after dinner – we could persuade her to get up and come out again for mango and her medicine! It was really lovely seeing her enjoying her mango.

I think we are beginning to accept the new “normal” Mom’s condition. The words are so few that she often supplements them with sign language and pointing. She walks deliberately and cautiously, and takes off for bed without so much as a “goodnight”. Yet, it is wonderful that she keeps to a normal sleep wake cycle. I say this because the memory of one of my babies topsy turvy sleep times haunts me to this day.


Learning and Growing

All my life I have been a reader without enough time to finish my reading. But reading is important to me, and every now and then I come across books that shake my foundations and make me go… Aahhhh, so that’s what it really is!

And that’s precisely what happened after I read Christine Bryden’s books about her experience of living with dementia – Dancing with Dementia (2005) and Who will I be when I die? (1998). In these books, she writes about her life before and after dementia, and vividly describes what it feels like not to be able to think. They have given me tremendous insight into what my mom might be feeling, and made me reconsider my beliefs about what I should be doing.

Christine was confused when she was first diagnosed with dementia, but her condition improved after about two years. I see mom improving now too. She does seem to remember more now and is better able to follow conversations. She is also expressing herself more clearly, and able to string a few sentences together. Whilst dementia is a progressing illness, it seems to me that when the brain settles down into a simpler form of operating, things improve.

Christine also describes how her dementia medication helps clear the fog in her mind and enables her to function more smoothly. I have seen myself how the skin patch medicine gives mom more words in her daily life. I would not want mom to suffer from the unpleasant mental fog that Christine described.

Christine mentioned the support she received from fellow dementia sufferers and how much she enjoyed their outings together. She describes happy lunches where nobody could remember what they ordered! Now this presents some difficulties with mom because she has never acknowledged having dementia. We have not pressed this topic and have so far skirted discussing the issue.

From Christine’s experience, I wonder whether mom might actually enjoy meeting people with dementia, and being able to face it together with them.  I am determined to move forward on this. We have finally received an appointment with a dementia daycare centre after six months on the wait list. I hope the centre works out.

Christine also talks about how she “covers up” in front of others when she has forgotten something, and the little lies she tells to fake it when she is not sure of what is really happening. However, she also reveals that in front of her loved ones, she knows she need not pretend, and is comfortable enough to ask for clarification when she cannot comprehend what is happening.

I would hate for mom to go through life everyday every minute pretending she knows what is going on when she doesn’t. For her to feel comfortable asking us questions, she must realise that we know she cannot remember and it is alright anyway. We too cannot pretend that her forgetfulness does not exist.

Soon after Christine started to “improve”, she suffered from severe distressing hallucinations. Because of the similarities thus far, I am very fearful that mom will someday suffer from hallucinations just as Christine did. Again, in order to be able to help mom pass this “phase” (I’m hoping it is just a phase if it does happen), she must be comfortable enough to trust us and speak about it.

Anyway, these are just my thoughts after reading Christine Bryden’s books. Click my Books tab above if you would like to read more about them and my other recommended books.

Mom is Back!

Yes, mom is back!

I had a few weeks respite from being a caregiver and mom is back! (Click here for the post about mom flying off).

Thank goodness she is back safely and well. She seems more alert and chatty and comfortable. She must have had a good break too!

Despite knowing her diagnosis, my sibs packed her off to travel by herself. Both times at the transit airport she got “lost”. She was supposed to have someone bring her from one plane to the connecting flight. We don’t know if she wandered off before the minder arrived, or whether she started off by herself because nobody came for her.

She told me – I took a train to the next terminal, and was the first to arrive there. Nobody else was around, but a man was there and told me to stay there and wait at the counter. After waiting a long while, someone came to bring me onto the plane. Everybody was already seated on the plane. Only my seat was empty. After I sat down, then only the plane could take off.

A few days after returning home, she became quiet and vague again. I felt puzzled and wondered whether my home environment was bad for her. A couple of days later I discovered the cause when I called home from work to chat with my home help. I asked if my mother was taking her medicines on time, and she told me that all is fine, and my mother told her she no longer needs the skin patch.

The skin patch! That’s the medicine for Alzheimer’s that got my mother talking again after a long silence. The daily skin patch was started in November last year, and mom never once remembered that she had it on or that it needed to be changed. Immediately, I asked my helper to put one on mom.

Ah, mom is back. She still has dementia. She can still fool the gullible.

Rain Clouds

At the most recent doctor’s visit, we find my mother’s memory test score is now 23/30. It was 26/30 just a few months earlier. This time she was tested alone. I waited anxiously for her to come out, and wondered if I should strike up a conversation with another caregiver in the waiting area. I decided against it this time; she looked stressed and did not want to meet my eye.

When mom finished her test, she was quite put out –

They asked such childish questions! And so many questions! It’s… nonsense!

What sort of questions, mom? They asked for my name, where I live, where is this place? And they asked if I can remember 5 words! 

What were the words, mom? She gave me 5 words, and 3 of the words related to a flower.

Have you done this test before, mom? No, never. I kept telling her to stop asking me this nonsense.

She’s just doing her job, mom. You should just answer her questions. Otherwise she will write on her report you were Uncooperative, Stubborn, Argumentative.

I said the above with a smile. Her anger softened. I did not tell her she had done the test at least twice before.

The doctor was bemused. But he was not happy and in fact quite concerned with her score. The deterioration was much faster than he had anticipated. When he prescribed the skin patch a few months earlier, he said the patch could slow down a 4-5 point deterioration per year to 3-4 points per year. Her score had come down 3 points in less than half a year.

Despite what the score shows, mom is really talking a great deal more since she was put on the patch. Unfortunately, this also means any logical mistakes she makes are becoming much more apparent. She is also becoming more belligerent. Once, she told me she ticked off some children for getting in her way during a visit to a relative’s house. (I was later informed she did it in multiple languages). At a recent hairdresser’s visit, she told me she was feeling very angry inside at the staff taking so long with her, not understanding that a perm needed time to set. On another occasion, I  managed to stop her in the nick of time as she was about to scold a stranger for standing too close.

The doctor says she must go to Day Care, and participate in activities there. It wasn’t good enough to read by herself, she needs more stimulation. We persuaded her until she agreed to give it a try. We told her others who were reluctant changed their minds after trying.

So we are reactivating the old referral to Day Care, and hope we can find a vacancy this time. We need to be more active, and not just let things be.

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.