Some time ago I attended one of the consumer forums where prior to the event it was not made clear the groups would be split into two; that is the people with dementia (PWD), and their carers/supporters of the people with dementia were separated. About 10 minutes before the end of the session, the reason why became crystal clear. One of the family members of a PWD came into our room interrupting our session.
We still had about four slides to comment on, but this carer rudely opened the door, entered, and refused to go our even though the facilitators of our group said we were not finished. This carer then talked over the facilitator, talked over us, and virtually and immediately shut us (PWD) up, effectively ending our session before we had finished.
Since then I’ve attended many consumer forums, and always, if we are workshopping topics in groups around the room with both groups present, the person with dementia says nothing, if their partner or family carer is present. In the morning tea or lunch breaks, they talk easily, even though some have some speech impairments. When I ask why they don’t contribute in the sessions, they say they can’t be bothered, as their family carer talks over them, or makes fun of them… I wonder if they had been disabled from a stroke or car accident if this would happen?
Last week I attended a support group for people with dementia and their carers, and the same thing happened. In fact, it was worse than that, as some family care partners laughed at, and about, their family member with dementia, right in front of them, pointing at them, and generally humiliating them (us) for our disabilities. Yes, it is a tough gig being a family carer, but it is even harder living with a diagnosis of dementia. I know, as I have experienced both.
People with dementia need everyone to respect them, and to enable them, not to laugh at them and talk over them. I was even told by one carer I and another person not present that evening are lucky to have the type of dementia we have, as “obviously it is not as bad as others”. This from someone who knows SFA about how hard we work to maintain our function… it was ignorant, offensive, and hurtful. My husband almost got up and walked out, and even considered hitting this carer on the way out. Thankfully, he did neither of those things!
We (PWD) have a long way to go, especially with those closest to us many who could be more caring and supportive and less disabling. I know many family carers or supporters of people with dementia who are not at all like the people I have described above (J, L, B, A, you know who you are, and many others amazing family carers xox), but those who disable us do so much to damage to our willingness to help ourselves, and our sense of hopelessness, which in turn encourages a learned helplessness.
It is also a form of bullying, and we need to speak out about it, for it to stop… we would not accept bullying of our children, and people with dementia should not have to accept it either, especially not by those who proclaim to be caring for us.