Our Journey with Alzheimer's Disease
Smith, Desmond, Smith, Dolores, New Zealand Journal of Occupational Therapy
Our personal journey with Alzheimer's began in 2004. At the time we had been married for 49 years and we were very much of one accord. By that I mean we knew each other pretty well. My wife Dolores had always been a self-sufficient, confident, and capable woman but I came to realise that I had been noticing a change in her, especially with regards to her memory. Initially, the idea knocked me back a bit and I didn't know quite how to raise the subject with her, but then one day I just came out with it and suggested she should go and talk to her local GP. It has to be said that she looked at me as if I'd gone a little strange. However, she agreed and made an appointment with the doctor. We had no idea then, what that simple step would lead to.
The GP carried out some basic memory tests which indicated that Dolores' responses were just a little below average. She was referred to a clinic for older people at Auckland Hospital and from there it was decided that Dolores should see a specialist at Green Lane Hospital. This involved more tests before a CT scan was done. At the follow-up appointment, the resident psycho-geriatrician invited us to sit down, looked directly at Dolores and said: "You have Alzheimer's disease. Now what do you think about that?" It must be said that as a clinical approach, this was like being hit with a sandbag!!! In reality, we were knocked into silence and came out of the hospital more than a little shattered. We went into nearby Cornwall Park to be alone while we digested the information and to ponder the question: Where do we go from here? First of all, we agreed that it was nobody's business but ours. We have always valued our privacy, knowing that each could depend completely on the other to respect that privacy.
We treasure our life together and we didn't want our way of life to change. Consequently, we initially agreed that our family of five girls need not be informed. We now realise that this was largely because of the undeniable social stigma that such a diagnosis incurs. At the time, the general public made little distinction between psychiatric conditions and dementia, both were feared, perhaps because they are poorly understood. I have to admit though, that it didn't take long for my reaction to change. I soon decided that one should go round with a sandwich board announcing the diagnosis. In my opinion the disease deserves understanding and sympathy, rather than a superior disdain.
Our next step was to contact the local Alzheimer's Association, to seek counsel and enquire as to what help they could provide. That proved to be an erroneous hope. To begin with, the nurse representative assumed that I, not Dolores, was the person with dementia. We were able to laugh about that later and speculated that perhaps it was not such an outrageous assumption after all! Anyway, much to our dismay we found that the total assistance they could offer Dolores was a monthly outing for a couple of hours. Their concern was principally with me, the carer and in fact much of the available help and support seemed to be related more to the carer than to the person experiencing the disease.
This came as a surprise because at the time, we knew nothing about Alzheimer's disease and even less of the difficulties encountered by carers. Still, after attending two or three meetings I decided not to attend the monthly carer support group facilitated by the Alzheimer's Association because I took exception to what I perceived to be an attitude which signalled the inevitability of the outcome. We soon came to realise that this attitude was pretty much the status quo of the time. For example, we went to see another specialist for advice on approaches to treatment and in the course of conversation he excluded Dolores from the discussion and instead, addressed me. When the specialist went out of the room Dolores said: "I'm so mad I'm going to say something to him. …