When either my husband or I get sick, we take care of each other. When you’re laid up with a nasty cold, it’s nice having someone making your decisions and coddling you – it enables you to think of nothing else, rest and heal. After all, that’s what partners do; they take care of each other. But what if your ailment, the issue making you more dependent on your partner, is permanent and long term? Would you really want that decision making imbalance to continue for the rest of your life? Probably not.
When you’re taking care of a loved one living with Alzheimer’s or dementia, that role can (and must) be considered differently than other situations in order for it to be successful and healthy. This role has many names – caregiver, caretaker or carer, the British term that my spellcheck hates.
But to me, none of these words encompass the trust, love and partnership that actually go into this type of relationship. That’s why I am shifting to a new term: Care Partner. It just makes sense. The old terms imply a one-sided relationship, one where the caregiver is in charge and the person receiving the care is passive. Think of the term, “He is under my care” (my husband is cringing in the next room), that doesn’t sound like a way of life that supports independence and self-esteem does it? And in fact it doesn’t.
Caregiver verses care partner seems like a subtle change, but the difference in these words can have a meaningful impact on the way you view your role during the unpredictable journey you are taking with someone with memory loss, and the way they view their role. Care “partner” evokes a relationship based on cooperation and common goals. One is not just giving and the other is not just receiving – it’s a two-way street fostering person-centered care and mutual feelings of purpose.
As we begin a journey of caring for (or better – with) a loved one we naturally and instinctively fall back on the one care exchange we all have experience with – parenting. Whether you are a parent or not, we were all once children dependent on parents, so we understand the dynamic. When someone is dependent on us, we take charge, we take control and we know better.
Care Partnering is different. It is two people experiencing the disease and negotiating its ramifications for their life together, equally. Yes – one person actually has the disease – but there is an understanding that both partners have new needs related to the presence of dementia. In this respect, both people are in fact living with the disease. Each person in the partnership has a role in the care and support provided.
In our Clare Bridge program we have a saying for our care associates, “do with and not for.” It is a motto for care partnering that truly captures the essence of what works.