Reading Time: 5 minutes

It has been six months since my last post — daily life continues to frustrate my efforts to write. Plus, February 11 marked 6 years since J’s stroke — another reminder of all that we have endured as a family. With that in mind, I’m determined to write this article that I’ve been contemplating for nearly a year — it’s not an easy one to write as it has the potential to make me sound self-centered and whiny, which is definitely not my intent. I hope only to draw attention to the fact that, while clearly the affected spouse/loved one bears the brunt of their affliction, the caregiver has a stake in their new reality. I can’t say I ever had a definitive plan for my life, but this path was absolutely not one that I considered, so maybe I need a chance to grieve for my lost life.

What I Wanted to be When I Grew Up

Honestly, I’m still not certain what I want to be when I grow up or even if I’m actually now grown up. Having been a child of the 1960s, my head was filled with visions of being an astronaut but once that dream was dashed, no particular aspiration emerged to replace it. I trod a well-worn path of going to college, then attempting to follow in my father’s footsteps in advertising but pivoting instead into the emerging world of computer technology.

I got married, completed my MBA, moved cross country, got laid off, got a new job, divorced, moved again, etc. — all rather common, somewhat expected things, and still I wasn’t sure where I was headed. Then I married J and life took a completely unexpected path. Soon, as I approached age 50, we would have a daughter and plans to take advantage of the benefits of our stress-filled corporate work-lives by retiring earlier rather than later, traveling, and enjoying life. Those plans were short-lived — Our daughter was born 3 months early (she’s fine now), I got laid off again at the peak of the Great Recession, and 5 years later, while still only working occasionally, J, the primary breadwinner, suffered the stroke. <sigh>

Where It Gets Complicated

I am not unhappy — a bit depressed at times, often frustrated, constantly exhausted, but not unhappy. I still have J, and while I dearly miss all that she was, I love and appreciate all that she is — and occasionally I get a glimpse of the old J when I make her laugh. We have our daughter who, everyday, becomes a brighter star in our lives. For everything that she has endured with her mom having a stroke when she was 8, she has matured and developed a enthralling personality that regularly surprises us, and makes us laugh and smile.

So why do I feel the need to grieve? Part of it may be that I’m just at that age, having recently turned 65, where I expected to be carefree, and nothing could be further from the truth. Throw in some other complications such as my parents are both gone, I’m starting to lose friends to one thing or another more often, nearly everyone I enjoyed or admired in my youth is likely now dead, and the world appears to be getting more complicated as time passes. I know it sounds cliché, but it’s 2023! — where is my flying car, my robotic housekeeper, my private island getaway and so on. Now’s a good time to take a breath as even I think I’m sounding whiny.

What Do I Miss?

Things we enjoyed doing together like cooking, dancing, playing golf, travelling, socializing, and having sex are all difficult or impossible. We’ve made adjustments such as going to matinees instead of evening performances since they start so late, watching golf both live and on TV instead of playing, traveling locally (when there isn’t a pandemic) instead of more ambitious trips, and so on. It’s all good but it’s not quite the same. As I said, my intent here is not to complain but to allow myself to voice and accept what I miss, enjoy what’s new and move on.

Google “caregiver grief” and you will find millions of results that all have the same thing in common — that caregivers grieve only when their loved one is dying or dead. For example;

As a caregiver, you may be susceptible to two types of grief: anticipatory grief during your loved one’s illness, and then grief that occurs after the person dies. Many caregivers experience “anticipatory grief” as they observe the physical, psychological, and cognitive declines occurring as the illness progresses.

Hospice Foundation of America – https://hospicefoundation.org/Grief-(1)/Caregiving#

This refrain is repeated again and again by nearly every organization focused on caregivers. It’s not wrong — it’s just not complete. The flip side of this is the multitude of articles providing advice to caregivers that fail to discuss dealing with the changes in one’s own life. I am guilty of this as evidenced by an article I wrote in April 2020. We, who try to offer advice to caregivers, discuss “coping strategies” ad nauseum but never get to the heart of the matter. Here’s a good article from WebMD that while useful just misses the point.

Remember, I am Not a Psychologist…

Does six years of caring for my spouse qualify me to offer advice on how to accept these changes to your life? How about if I avoid the question by simply offering what I’m doing to deal with it, and not assuming this will work for others. As they say, “Your mileage may vary.”

In my opinion, the answer is to allow myself to consider the topic. Denying myself any feeling or expression of grief resulting from the unanticipated and likely permanent change to my life, because it feels too self-absorbed, represses feelings that I have to deal with at some point. My life has changed and not always for the better. My spouse is not dying and she will likely outlive me. Her condition is not improving, and without a medical breakthrough, it likely will not. There are things I expected to do as I grew older that I may never get to do — on the other hand, there are things I am doing now that I never expected to do as I expressed to J the other day when attempting to clear lots of rice from her lap after an unsuccessful attempt to feed it to her — after all, Rice is evil!

Allowing myself to recognize that I’m sad or angry about the stroke because of the impact it had on my life doesn’t make me a bad person, as long as I don’t take it out on J. I’m certain she’s sad and/or angry about the impact the stroke had on her life, and I try everyday to minimize that impact for her, but there is no one minimizing it for me.

Where the Rubber Hits the Road

As a caregiver, you need to come to grips (pun intended) with the fact that your life has changed. There are many cases of people running away from caregiving or placing the loved one in a facility or hiring full time help or simply neglecting the responsibility. These choices are valid, except for the last one, depending on your circumstance, but they are not be right for me. I expect to hand off J’s care only when I’m unable to do it myself, and by then, the arc of my life may be transitioning again.

To be clear, our society often pushes us to repress feelings and desires relating to a wide range of topics rather than to have open conversations about them. A caregiver’s “lost” life is one of those issues, and the result is not healthy for the caregiver, the loved one, or the caregiver community in general. We need outlets for these frustrations to help us adapt to our changed lives. I, who has never been known for positivity, look forward to finding the right balance of comfort, new experiences, and triumphs that bring me satisfaction in my new reality.

How did you deal with the change to your life? Please share your comments and questions.

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