eventually, baycrest came through, which is where he was tested and officially diagnosed. eddie had an excellent clinician who left no stone unturned, and it took about six months to rule out all other possible conditions. there wasn’t a discipline that wasn’t involved until we learned that he had a relatively rare form of dementia — corticobasal syndrome. my understanding is that this particular form of dementia is not easy to diagnose as 50 per cent of cases present with
parkinsonian
type of symptoms, and the rest present with cognitive decline.
what sort of support did you provide to your husband?
he was a great cook and he couldn’t do that any longer, so all meals had to prepared and plated. if i was going out anywhere, i needed to leave food plated with written instructions on how and when to warm it up. i had to drive him everywhere, and normal social behaviours became much more difficult, and as his disease progressed, completely impossible. this heightened his anxiety because on some level, he was aware that things have changed. he became quite socially withdrawn, and as a caregiver, it was almost impossible to discern how much of his behaviour was related to the disease and how much of it was related to human nature and personality.
how has dementia impacted his personality?
there were points where he would scream, be highly anxious and aggressive. if there was anything that i would swear to be true is that i couldn’t ever imagine my husband being aggressive — it was diametrically opposite to his character. we tried everything in terms of different strategies, we engaged every possible means to alleviate his anxiety (the aggression would follow the anxiety and we couldn’t ever nail the triggers), and we tried all kinds of therapies to help divert his attention (be that music or different types of programs). pre-covid, he attended one of baycrest’s
day programs
, but the pandemic created more challenges for us because personal care became impossible, and private care also wasn’t available. in terms of dealing with the anxiety, we tried virtually every non-medicinal therapy imaginable and not a single one worked. eventually, we tried medications that were not specifically formulated for dementia patients, and it was constant experimentation and change of medication. every three or four weeks, something would work for a short period of time and we’d go back to the drawing board. this has been our reality over the past five years.