It’s funny how so often I don’t even realize what I have forgotten, and how surprised I am by that. You would think that after six years it wouldn’t surprise me but it does, but the fact is I’ve forgotten what I forgot a lot of the time. Then someone will say something, or I will see something that will trigger a forgotten piece and it comes flashing into my mind, like the gate of dam was just opened and the water came rushing in, so too does that forgotten piece, that moment in time or that event, and along with it an emotional response.
The emotional response at times is almost child like very kiddy with excitement at the revelation, it can bring about a feeling of warmth and comfort, it can also bring about tears and a deep feeling of grief. Sometimes it brings such joy and a sense of contentment.
This explains in my opinion why even has people progress with their dementia they would exhibit different behaviours and responses.
So often people with dementia are “ purple dotted” when in hospital or long term care when in fact they are not they are just responding to triggers and memories. I for sure would or will be purple dotted, because I am totally a person who does things and responds from an emotional place. Some respond from a very logical place, some emotional, we are all different, but we all respond. Some people will act instantly when put in a fearful situation, others will freeze, but all will have a response.
So although at times forgetting things like appointments, meetings, taking medications may be a frustration, I have learnt to live with them , shrug my shoulders, shake my head, laugh at myself, and say well I’ll try for the next time. It used to trigger such a level of frustration that it actually caused me anger and anxiety, the anger was at myself for being forgetful in the first place, instead of being kind and forgiving to myself because I do have and live with dementia, still too often putting to high of expectations on myself, the anxiety coming from fear, that things are getting worse, that my illness is progressing. Yet that is the expected, the progression, yet somehow because we put these expectations on ourselves, because we allow the fear to develop into anxiety we end up with unpleasant and often unexpected responses to situations.
Perhaps during later stages when we no longer can rationalize these things, yet the responses are still there, it again explains a lot of behaviours that are mislabeled and mis treated with medications.
I am still in early enough stages ( that’s my opinion), people on the outside may have a different view, that I monitor ( or try too), myself closely, I pay a great deal of attention to how I am responding to things. I am working on learning the importance of laughing at myself, replacing fear and anxiety with humour and laughter.
I don’t want other people to laugh at me or make fun of me or my missteps because of my illness, that is very belittling. But having someone join me, and be able to share in the silliness of something that is anything but makes it bearable.
The other day a friend came and took me for a drive and out for the day because I have not been feeling well enough to go on my own, we were driving and talking and something struck me about how surprised I am that I keep forgetting I forget, we both ended up having great fit of laughter over it, it was a great shared moment. I can and do know the difference between the shared experience and the mocking and judgmental moments or the “ oh I do that all the time statements which while well intentioned are anything but.
Learning to live with Dementia, learning to find the new mechanisms to adapt, not only to how we do things but how we respond as well. Who said people with dementia aren’t capable anymore, seems to me that being able to adapt in those ways debunks that theory.