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.