The Psychological and Social Effects of Being a Caregiver
I'll probably say this at the beginning of every post – caregiving is challenging. And it affects us, the caregiver, in many ways.
As a husband and father, i didn't want to get in touch with my feelings about being a caregiver. I wanted to distance myself from caregiving and approach it as a detour. I could see no positive aspect of caregiving. This approach and the attitudes that followed led to psychological and social issues.
The feelings I attempted to push down led to emotional numbness. Distancing myself from caregiving led to distancing myself from my wife. When I acted as if caregiving was a detour in my life, the unintended consequence was to close my eyes to everything else; when I could only project a life of suffering, I began to fantasize about an early death for my wife. I equated caregiving with suffering. And I wanted to be free from it.
Watching my journey, you would describe it as a tragedy. So how did it end as a love story?
What changed? Much changed. I began to see myself, my wife, and the world differently. I didn't suffer as much. I felt more content with myself.
As my wife began losing her memory, as our everyday interactions began to change, I told myself I knew what was coming, but not really. I started imagining different future scenarios, but none projected an early death for my wife and an early escape from caregiving.
Growing up, I never heard the adults in the family talk about the inevitability of death. Death seemed to be an accident. No one discussed it. And when someone died, it was treated as a tragedy, reinforcing the notion that death would be unexpected, accidental, and not for everyone.
The question became, am I seeing what is happening around me objectively, or am I seeing what is happening around me in error? Am I seeing what is in front of me from an erroneous perspective? Is my subjectivity built on an accumulation of views from family, friends, culture, teachers, etc.? If I change my view, will it reduce my suffering?
There is a book called The Yoga of Objectivity by Swami Dayananda, which I have read numerous times and has helped me change my perspective and guide me to see what is happening in front of me.
Swami Dayananda says, "To be objective is to know that what is here is given and to face what is. It means not projecting ourselves into situations. People hardly take things as they are but look at things in terms of how they should be.
Human life consists of both pleasant and unpleasant situations that we cannot avoid. They unfold in front of us day after day; unpleasant situations make us unhappy and pleasant situations make us happy, even elated. How can we learn to bend so that we are not uprooted by these situations?"
When I placed my wife in a memory care facility, the lead nurse asked if I would be interested in support from a hospice organization. For some, the sirens would go off. "She's not ready for hospice. She's not dying. I'm not ready for hospice. We're not giving up, etc., etc., etc."
I asked two questions, "I thought Hospice provided support during the last weeks of a person's life, and what are the benefits of enrolling now?" I discovered that my wife was eligible for hospice and that a person could be under hospice care for months and years. The benefits were numerous – hospice paid for all expendable supplies, beds, and wheelchairs and provided an aide for several hours a day to provide additional care. I enrolled my wife in hospice. But many refused hospice. They weren't ready to accept the trajectory of their loved one's life. Admitting to the inevitability of death was too painful.
Rather than distance me from the caregiving process, the memory care facility, and the residents and their families, I embraced everyone. Instead of treating the residents as aliens, I treated them like family. Instead of treating the aides as workers speaking in unfamiliar dialects, I treated them with respect. For the families who came to visit their loved ones, I responded to them as I would my family and did everything to help them. I joined the facility's Family Council and lobbied to make changes for better care, meals, and process.
I felt happier when I stopped fighting against the reality in front of me and embraced it. I brought more love and compassion to my wife. The tragedy of my wife's journey turned into a love story.
If you’re a caregiver having difficulty in this role, feeling alone, frustrated and tired with no peers to share your experiences, on a rollercoaster ride of doctor calls and appointments, bouncing between good news and bad news, having more questions than answers, suffering as you’ve seen others suffer, having tried what everyone has said to try but to no avail, then you may be ready for a fundamentally different approach.
