It is normal for some relationships to deteriorate into power struggles over who is right and who is wrong, but it does not seem so okay when it is power struggles and egos of people without dementia who don’t appear to want people with dementia to stand on their own two feet. In my thinking on this, I believe it is to do with the unequal relationships that have previously been the norm, where we are dependent on others, and they have, for almost forever, been used to having all the power, and in fact, have quite likely become very dependent on it.
We were dependent on them, and they have become dependent in their role as care partner. This dance of co-dependence has been doing people with dementia harm.
Everywhere I look, there are groups of people who do not have a diagnosis of dementia and who proclaim they are devoting their lives to improve the lives of people with dementia – professionals, past and current family care partners, and others without dementia – but who, in reality, look and act more like they are fighting for fame and dollars in the business of dementia, and as if they don’t want us to succeed without them.
Many of these same people would say, publicly, they want us to succeed, they want us to be treated as equals, they are themselves wanting to work towards dementia friendly communities even, and yet, they are to doing this themselves.
Most of us have grown up in a vaguely dysfunctional families or perhaps even a dysfunctional society, and one that taught that it was shameful to be wrong, and the message that our self-worth depends on not making mistakes, and on being perfect. I am a product of that, and the perfectionism I used to exhibit was some of the baggage from that childhood.
What appears to be happening between people without dementia and those of us speaking up and living beyond dementia, is that the co-dependence many family care partners and society relied upon – and indeed, have gotten very used to – is disappearing, and our rights to autonomy and equality is being demanded.
This previous dance of co-dependence produced extremely dysfunctional relationships between those with dementia, and those without dementia, and the power struggles I see around the world now between these two groups may be because of this co-dependence we once had with our care partners.
A healthy relationship is a partnership, an alliance, not some game with winners and losers, and when the interaction in a relationship becomes a power struggle, due in part to the fact that care partners and others are given all the power over us, and people with dementia are Prescribed Disengagement®, there can be no winners.
When a co-dependent feels attacked – they are likely to react negatively. And this could be any time it seems as if someone is judging them – and it is happening a lot now as more and more people with dementia speak up publicly and say, ‘no, it is not like that for me’, or ‘please don’t call me a sufferer’, or ‘no, that is not how I feel’. But we are not judging them, we simply want some equity and autonomy.
It’s no longer just a look or a tone of voice that says we disagree, or even our ‘challenging behaviours’, we are actually speaking up, in droves, and this could easily be interpreted as meaning we are being critical, that they weren’t doing something right – rather than, us simply wanting a say in our own lives, and trying to improve the experience for all of us.
Virtually everyone agrees with the slogan, “nothing about us, without us.” Yet, so many are still not willing to allow that to happen.
A relationship needs to be a partnership, an alliance, not some game with winners and losers, or one person in control all the time. When the interaction in a relationship becomes a power struggle, or our ego gets in the way, there are no winners.
Therefore for these evolving types of relationships to work, or to meet our needs not just theirs, and for the interactions to be respectful, others have to sit back and allow us to take the reins again. Yes, caring and supporting someone with dementia may come from a place of great love, but it does need to honour and respect us.
This last couple of years, I see an example almost every day of a person or people without dementia, who are using us to raise money, to raise their professional or personal profile, and who use relationships with us to sell their own credibility, product and services. I see them using photographs of eminent people with dementia who have died, to promote their own new ventures, and whose relationship they claim are the reason they are inspired, even some who no longer had relationships with these people when they died.
Many say they want us to succeed, but act as if they are in direct competition with us, and act as if they want a group such as Dementia Alliance International to fail. So very sad…