Last week, I went to the Words of Wisdom Learning seminar at the North Grenville Public Library. The Topic was Ambiguous Loss and was directed to caregivers and those dealing with Dementia in a friend or family member. The speaker was Celia Carter MSW, RSW.
The speaker started by defining what Ambiguous Loss meant. Most of the attendees were caregivers and were only too aware of the meaning and effects of ambiguous loss. You see, when you are dealing with dementia, it is almost like watching a person walk away into a thick fog, because they are still there but they aren’t at the same time. As the dementia progresses, you still have the physical person there with you but, they are slowly fading into the fog of dementia. You are losing them but they are still there.
Friends and even family members will sometimes say to the dementia sufferer that they do not think they have dementia, because sometimes the patient can find ways to mask their memory issues or may be having a good day that day. The thing is that when you live with a person with dementia day in and day out, you notice even the little things and you know when they are having a good day and what a bad day is like.
The speaker was very knowledgeable and answered questions from the audience, but one of the attendees was an executive from a local hospital and he seemed to be there not to help or learn from the speaker, but to quiz the audience about their experiences. He was using the audience as a focus group for a project he is working on toward better help for caregivers. Although most of the audience would wish to support his efforts, he definitely moved the dialogue away from the intended topic to his area of interest. This was unfortunate in that it robbed the audience of the opportunity to discuss the advertised topic, and some of the folks had traveled an hour or more to discuss the issue they were living with only to have the meeting hijacked by the albeit well intentioned hospital executive. Most would have preferred he had set up his own focus group meeting and invited the public, or obtained volunteers from the Alzheimer’s Society, to help him discover how the new health system can evolve to help caregivers cope with the stresses of living and providing support for people with Dementia.