Dementia Transformation

I used to struggle to understand if those with dementia are still the “same person” or whether they are “gone” in a “premature death”. Dementia is sometimes described as “the slow death”.

Today I view it quite differently. Let me explain.

I believe we all change day by day – not just because our experiences mould us, but because we can and do change. For example, I have had periods of Beethoven, where I play nothing but Beethoven. During these periods, it is often impossible to enjoy another composer or even play in a different style. At other times, I play nothing but Chopin, or nothing but Bach. Yet at other times, I can move from one style to another easily with no problems.

In books too, my preferences change from time to time. I move from sci-fi to murder mysteries to action thrillers to mindfulness theory and practice. Of course, if we think about fashion and clothes, everybody (I hope) moves with the times. Yet despite all these changes of seasons and tastes, I am still me in essence. There might be periods of calm and periods of turmoil and sometimes I cope better than other times. But I am still me.

And so I think Mom is still Mom, but different. The essence of her is still there, although she behaves differently, thinks differently, and perhaps has different preferences.

Because of dementia, she may have a harder time understanding and reacting to what is going on around her. Because of dementia and memory loss and not always knowing where she is, she may feel more anxious. Because of dementia and losing the right words, she may be unable to express herself and her concerns and become more distressed as a result. The end result is that she is changed, partly because of the changes everyone goes through as time passes, but also because of the changes forced upon her by dementia.

But a person with dementia is still the same person in essence. Personally, I cannot say Mom is gone or that dementia has taken her – she is still very much here. Just different.

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.

Conversation with a Mentor

I have a mentor I am very fond of, a wise and gentle old man. We don’t see each other very often, but each time we do, we cover many topics and I come off a little wiser. The conversations often go like this… I surface a problem, he asks a few key questions, and we discuss and arrive at the conclusion. Then repeat until all problems have been covered. We do not always agree, but that is fine. More importantly, we reason things out.

We talk about many many things, but the approach is always the same. Who are the players, what is the stage; what did the players do, what drives them.  Then comes the crux – what is likely to happen next and how quickly will it happen. And then we ask, is there anything we can do to influence events, and if so, what should we do, in order to ensure a good outcome. (No, we are not in politics, but politics is everywhere!)

We don’t actually meet very often, and I am so glad we could meet again a few days ago, after an interval of more than a year! Despite that, we could dive straight into discussion, and as usual, I learned quite a few things.

After we discussed work-related issues, we went on to other topics. We touched on the aged sick, and the problem of medical over-treatment thus prolonging death and suffering. We discussed gay marriage and whether it will arrive in Singapore (where sex between men is still illegal). Finally we discussed dementia. To my surprise, though I really shouldn’t be, he showed in-depth knowledge of dementia. We discussed the experiences I faced with my mom not really recognising me as described in previous blog posts (Feb 13, Apr 14, May 20).

And then he recommended I read the following book – Dancing with Dementia, by Christine Bryden. I am only halfway through it, but it has been an epiphany. Written by a dementia sufferer herself, she has given me so much new insight into how my mother must be perceiving the world and feeling inside. How little I had understood before! For example, Christine writes about her awareness and how difficult it is to perform certain tasks, such as making a cup of tea, carrying a glass of water, even walking, as the dementia progressed. I can  hardly imagine how mom feels as she tries hard to carry on normally. Christine’s first book is “Who will I be when I die?” but it is not yet available on Kindle.

I am grateful to Christine Bryden for writing about her journey, and glad my mentor introduced her to me. I fully recommend it to caregivers who wish to understand better what their loved ones are experiencing as they live with dementia.