Life in the Margins

Who were you before you became responsible for someone else’s welfare?

I’ll just come right out and say it: I don’t want to be associated anymore with activities that draw attention to my role as caregiver. I just want to be me. Being responsible for another adult has stolen that from me. I’m on a mission to get it back.

I’ve been forced to take an involuntary break from my writing as the emotion that drives my writing has slowly dried up. Instead of writing I’ve been researching about Alzheimer’s, dementia, and other losses of the self. I know my situation doesn’t exactly line up with those conditions, but I’ll take what I can get at this point as the literature from the family’s perspective of an injured brain is scarce compared to what it’s like for the patient. Why is that? Why is there so much attention on the injured and so little on those who support the injured? My heart rails and rages at the unfairness of this. The injured often isn’t even aware of their suffering to the same extent the family is. Arguably, the injured brain and consequent lack of awareness is a blessing to them, shielding them from reality. Those around them are not so lucky. We see and feel it all.

My self was sucked into the vortex of what it means to support a spouse with a brain injury. A slow drain on my own resources; resources that are not reciprocated in full.

In my research, I came across a passage by Pauline Boss that shocked me into putting my awareness of my individuality at the forefront of my life.

“When one person in a couple is healthier than the other (not an unusual circumstance in families today),the marital or parental relationship becomes skewed, with the healthier person making most of the decisions and the ill person primarily on the receiving end. But herein lies the caregiver’s conundrum. You need both individuality and togetherness…..Although we hope there is mutual benefit for both patient and caregiver, the startling statistic from researchers is this: caregivers die at at rate 63 percent higher than people the same age who are not caring for someone with dementia. What this means is that caregiving is dangerous to your health. This is all the more reason for professionals and the larger community to work more patiently with the persons who give the care and now bear the burden of their loved ones’ survival. They deserve empathy and respect. For the sake of their health, they need community and professional support to maintain a separate identity along with the role of caregiver.

From Loving Someone Who Has Dementia by Pauline Boss, PhD

My community includes my work colleagues, my writing mentors, and my health professionals. I lean on them to bring out the best in me, outside of my role of caregiver. One of them recently asked if I was proud of my work in my role in my husband’s life. I didn’t know if I was proud of my work as the caregiver, but I did know how I felt about myself.  Am I proud of my life, of my choices to stay fully present in my life and my marriage? I’m most certainly proud of myself.  Of my strength, my resiliency, of the life I’ve created in the midst of challenging circumstances. 

I’m proud of the choices I’ve made to create the marriage relationship I have.  To be “pretty good” in our less than ideal circumstances is being amazing in ideal circumstances.  I don’t feel proud like I’m doing something honourable, holy or altruistic, just that it is my creation, my energy, and my intention.   Yes, I sometimes do feel sad and awkward that my husband is not like other men might be. And at the same time I have moments where I’m so proud of him, of his efforts to keep growing, learning, and trying in life, in marriage, and in parenting. I feel both, and that’s okay.  

I’m proud that I’ve created a safe place for our son, that at 16 years old he still asks for a hug in the morning, that saying good night to me is still an important part of his day.  I’m proud that he feels good about who he is.  All of these things I have done.  Because I AM strong.  Because I AM resilient. Because I DO care.   Nobody ever had to tell me to be this way.  No one ever had to tell me to get my shit together.  Ever.  

All these things I’m proud of are not because I’m a caregiver.  They are because I am Helena.  I was all those things long before I became responsible for my husband’s welfare.  And that’s why maintaining individuality in the midst of also being responsible for our spouses matters. We need to remember who we are. The world needs to know who we are. Being a caregiver is just a name, a title, or a role. We are so much more than that.