Published in the Arizona Republic, September 2024
I bring this up because in the context of caring for people living with dementia it really does matter. Dementia is a funny space. Not funny “ha ha” but funny “awkward/different.” It isn’t a diagnosis, but a condition, yet consistently described as the end result. “I was just diagnosed with dementia.” Dementia is brain change; diseases of the brain significant enough to impact our daily activities and routines. And while there are standard effects, it affects everyone differently so that if you know multiple people living with it, each may have similar symptoms, but they present differently.
So, care ‘giver?’ or ‘partner?’ The difference lies in a few key perceptions, our automatic responses to situational happenings, and ultimately, our mindset. Think about what a partnership is – a voluntary agreement where parties agree to participate and cooperate to advance mutual interests. Friendships and marriages are partnerships. And when someone we love gets sick, hurt or diagnosed with something chronic, we move into caregiver mode with specific intention to help them out, doing things for them if they’re unable to do it themselves. We read the situation, work together and deliver only what’s needed. The more serious the situation, the more assistance we offer. Care partners are person-driven, and care givers are more task-driven.
Dementia – no matter how it exhibits, Alzheimer’s, Vascular, Lewy Body, Frontal Temporal, etc, is a process ebbing and flowing in its progression to the very end of life – good days and bad. It can be a long journey if other issues don’t threaten our lifespan. So how do you respond naturally, automatically, when something goes awry? How do you see the situation? Are you fixing it, or helping to solve it?
In the early stages, symptoms come and go quicker depending upon our overall health, how well we’ve slept, our level of stress, our water and nutrition intake, and several other factors. Episodes sporadically appear and go away randomly and that messes with our expectations of what our loved one’s capabilities are. And when loved ones begin to do things differently, erratically, or more slowly, often we don’t know what to do. When we have a task to be accomplished, the situation can become hairy. We can be impatient, just taking up the task and doing it ourselves – because it’s faster, cleaner, more efficient, etc. More importantly, we don’t want to watch them struggle with confusion.
This is presumed as heartfelt caregiving by someone who cares deeply and is committed to their person. It can, however, deprive the person of the opportunity to consent to the task, make connections, maintain skills, do as much as they can when they can. And it ultimately may rob them of the opportunity to have dignity or purpose, which are the most important components of humanity.
Care ‘partners’ support loved ones in a slightly different way. They work in true connection, allowing individuals to do as much as is possible as appropriate, and remain connected in a completely different way. There is more opportunity for engagement, more understanding, more conversation, joint decision-making and therefore, less dissention, and more joy and forward momentum because we included our person in the process. It does take more time. But what’s the goal?
Caring for someone comes out of love. We all start out as care partners, but when our agenda gets in the way, we can find ourselves becoming care givers. Adjusting our focus can create a world of support for the one we love. Who do you want to be? Making the transition back is not hard with some very simple tools to get you started.
By Elaine Poker-Yount
Elaine Poker-Yount is an Aging and Dementia Care Educator/Specialist at Successful Aging AZ. Her columns are featured monthly in The Arizona Republic.
