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Care-Partner, Not Martyr
Posted: Monday, August 17, 2015 2:38 PM
Joined: 7/24/2015
Posts: 3020

This quote comes from the book, Dancing With Dementia, by Christine Bryden...who has dementia (I think this comes on sub-consciously, adding in the hope of it becoming conscious):

"Adopting a sole identity as our care-giver highlights our illness and strips both of us of other identities, we have become care-giver and sufferer, in a relationship of co-dependence, You need us to be sick so you can retain your identity as a care-giver, otherwise you might feel threatened if we become empowered in any other role.

In this role, you may soon feel overwhelmed by the multitude of tasks, of remembering for two, of planning and organizing for two, or covering up our deficits, and grieving over our losses, rather than looking for what remains [of us]. You can quickly become exhausted, sad, depressed in despair. We know it is hard for you, and we treasure all that you do for us, and know how helpless we have become, but we want what is best for you too.

At the same time, if we adopt a sole identity as a sufferer of our illness, we learn helplessness. We lose more function, and show and excess disability, where more dementia is apparent than you might expect from the amount of damage we have. This will only add to your burdens as a care-giver, and exacerbate the problem for both of us. It will be a downward spiral to disaster. In this situation, we have become co-dependent, needing each other to accept our labels as victim and sufferer for our identities.

Alternatively, we might cover up our deficits and try to act as if we are normal. This too is a form of co-dependency, because we have put your assumed need ahead of our honest self expression. We want to stop you worrying, to stop this downward spiral, and we pretend normalcy. But as the disease progresses, we can't keep up this pretense, because it becomes impossible and exhausting, and we become passive and dependent. Suddenly you are faced with the burden we tried so hard to hold away from you, alone.

Co-dependency is unhealthy for both the person with dementia and their family. We can become more incapable than we really are, and you can become more exhausted that you need to be. And neither of us is honest, each of us is journeying alone with dementia, struggling without true insight as to what to do.

We need to move away from labeling ourselves as care-giver and sufferer, towards becoming a care-partnership, in which we accept, collaborate and adapt to new roles within our journey of dementia. I can become a survivor, a person with dementia, you can be my care-partner on this journey. I can be a care-partner with you, communicating my true feelings, my true needs, so you can walk alongside me adjusting and compensating for these expressed needs as we face this struggle together. In this care-partnership, the person with dementia is the center of the relationship, not alone as an object to be looked at, as merely a care-recipient. Instead, we become an active partner in a circle of care."

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