by Ginnie Horst Burkholder
I received an e-mail from a longtime friend who wanted to know what she might do to help a caregiver in her family.
I had flashbacks of the early days, before diagnosis, when so much of what Nelson did was not making sense. Then we would meet someone socially who would ask how we were doing, and Nelson would say, “Fine,” and talk about teaching as if he still were, even though he was on sick leave. Perhaps lack of awareness combined with a still-needed denial kept him reflecting life as he wanted it to be, rather than the way it was. In any case, it didn’t reflect the truth of the matter for me as the spouse of someone with early-stage dementia; and so friends or family would walk away with no clue about our reality. I would stand by silently, without words, knowing we were not fine, but feeling powerless and alone.
Finding my voice
In those days, his role in our relationship was spokesperson. He was good at it, before the dementia, and much more comfortable in social exchanges than I was. But now I was dismayed by his misrepresentation and alarmed at how lost I felt because of it. I needed to find my voice. I needed people who knew about our search for answers to ask me privately, “How is Nelson?”
We were still so much a couple then. We had done almost everything together in our marriage. We liked it that way. But now I needed to separate myself in order to give voice to my confusion and to the puzzling things that were happening. Persons who approached me privately and asked how Nelson was doing gave me the opportunity I needed. Those conversations helped me begin to accept my new reality and initiate the numerous changes that a caregiver has to make to start moving into a new role.
Once we had the diagnosis, and I had settled into a routine of caregiving, I still needed the support of others. There was a tendency to withdraw as I struggled with the ramifications of Nelson’s life-changing dementia diagnosis. As I watched dementia do its dirty work on my spouse, I was beginning to say goodbye to the person I married. I was blindsided by loss, which I quickly realized would only increase with time. That grief seemed too big for others to understand. Family members and persons who wanted to be supportive were helpful just by taking the initiative to connect, and at the same time giving lots of grace when I was not responsive, or lots of empathy when I needed to express frustration, fear, and grief.
'Crazy-making' shift of role
We caregivers may have all kinds of previously unrecognized, dormant, false beliefs with resulting feelings to confront and sort through:
“A loving spouse will never be impatient with their partner who can’t be held accountable for his actions.”
“A Christian with faith wouldn’t question God or feel angry about loss.”
“A caring spouse will always be there for the diagnosed no matter what the cost to themselves.”
“It’s weak to need help.”
“I’m on my own.”
I found myself struggling with all of these issues at one time or another. Lost in a maze of confusing events and unable to live up to my own expectations, I would then feel guilty.
At the same time, I was experiencing grief; and I was also trying to find my way through a life I never dreamed of: becoming a parent to this person whose dementia was morphing him into a child. And still I was expected to act in the role of spouse. It was crazy-making. Who was he? Who was I? Who were we together? As the caregiver, I had to start over by redefining who I was in the marriage relationship. The progressive dementia meant that this process would be one-sided, would constantly be shifting, and would always move toward greater loss.
Today the question I need to hear has changed to, "How are you doing as a caregiver?" This question, from an empathetic listener, helps me continue to process my reality. It is a seldom-asked but welcome question. Perhaps people don't know what to say, or maybe they are uncomfortable with the distress of it all. But when someone can ask, listen, and simply hold the ache of it with me, the emotional heaviness dissipates.
I have found my voice. When I want others to help me problem-solve a response to some new behavior, I tell them, “I want help with problem-solving.” More often I want them to listen with reflective prompts that help me probe my own emotional landscape. I have learned to say,” I don’t want to problem-solve right now.” For me, the stress of “the long goodbye” has required enormous amounts of talking through the emotions. Those who listen and affirm have helped me regain my equilibrium by validating the struggle. From that place I’m better able to focus on the problem-solving as needed.
I truly believe the people who walk beside me – whether listening, problem-solving, or helping in chores or caregiving – have given Nelson the quality of life he has because it is their support that has kept me finding my way one day at a time. It’s not only a child who needs a village. Persons with dementia need a village too. When a caregiver tries to be the whole village, everyone loses.
So, my dear friend, you ask what you can do? Ask about the cared for. Ask about the caregiver. Ask if the caregiver wants your help in problem-solving. Ask if the caregiver just needs to talk. Ask how you can be a part of the village and then always listen carefully and validate the strength and the struggle of caregiving. That’s what you can do.
© 2009 Ginnie Horst Burkholder
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