Riding Bitch

The daily musings of a writer.

Confessions of a Former Caregiver


There are certain anniversaries that are tough to deal with in the first few years of grief (if not longer). Birthdays, wedding anniversaries, Valentine’s Day, Mother’s Day, Father’s Day, Thanksgiving, Christmas, New Years and so on. For me, this time of year (January/February/March), brings back many painful memories as well as some good ones.

During these months two years ago, my late husband Kaz was deteriorating in mind, body and spirit. He had suffered a motorcycle accident several months prior and was still very depressed. The accident had rendered him weaker on the left side of his body. He could no longer ride, write, drive or work and he had to walk with a cane. For a man who had been an avid motorcyclist for over half his life, who loved skate and snowboarding, who prided himself on his independence, and who had a passion for speed, it was nothing short of devastating. I think the accident might have been more devastating than his cancer. At the very least, it was a significant turning point for him, me, and us.

His depression, while understandable, was challenging for me as his live-in caregiver and girlfriend. I had been warned the year before by a colleague whose mother-in-law had brain cancer, that the illness can change a person cognitively/emotionally. After the accident, he was not only depressed, but also more forgetful and disoriented. The changes were so subtle at first I thought perhaps I was imagining them. When I would suggest he try to shore up his memory by programming his phone with alarms or letting me write him reminder notes, he bristled. He also refused to go to a local brain tumor support group or speak with a psychiatrist. All of which, lead to tension between us.

It was sort of a catch 22 situation. He resented me taking control of more aspects of our lives, but was too depressed to do much to maintain his independence. Meanwhile, I resented that he wasn’t taking advantage of his dwindling time on earth and with me. He had lost a lot, but not the ability to appreciate a sunset or a good meal or the smell of the ocean.

We had a few terrible arguments during this period. The worst, when I came back from visiting my family in NYC for a few days. I had recharged my batteries but also tasted ‘normal’ life again, which made the return to our sad situation all the more upsetting. I accused him of giving up prematurely, of basically waiting to die, and warned him that this attitude would not fly with me for much longer. He had said many times that if he lost the ability to ride, he wouldn’t want to live. But if he no longer wanted to live, why was I approaching a nervous breakdown trying to help him?

Finally, in mid-March he started to turn around. He agreed to speak with a few potential psychiatrists and he went to (and enjoyed) a brain tumor support group. We hung out with some friends and had some good times. Whether he was doing so because he genuinely thought it would help or to please me, I’m not sure. We never got a chance to see if any of these things were helping because he had seizures in late March.

Before he passed, I tearfully apologized to him for being such a terrible caregiver. He responded, “You weren’t a terrible caregiver. You did a great job. And please don’t cry. It hurts me to see you cry.”

After he passed, the guilt I had already started feeling intensified. I had done much right, but had also done some wrong. The moments when I said things in anger were the hardest to live with. And it was difficult to discuss with anyone except my therapist because people didn’t want to hear about it.

Since then, I have learned that there is such a thing as caregiver’s guilt, as well as survivor’s guilt. I will write more about them in another post. These days, I try and reflect with compassion. I try to understand his point of view, and in my communication with him since his death (through my writing), have tried to articulate mine. It’s strange and bittersweet, but sometimes I feel as if we understand each other better now than when were in the thick of it. It’s amazing what one sees after the fog of cancer-related stress has lifted.

Author: nivaladiva

Freelance writer and independent filmmaker.

13 thoughts on “Confessions of a Former Caregiver

  1. The reality is, that your “anger” may have been the catalyst for his turn around. While painful at times, it sounds like you were an excellent caregiver. Being human is part of the package 🙂

  2. I can so relate to every single word in this post. So many moments I find myself completely lost in some of those awful memories, the ones I go over and over … before I come to and STOP myself.

    This line in particular – “I feel as if we understand each other better now…” and what follows, has given me a lot to think about.

  3. I started crying reading this. You’ve written so honestly of one of the more terrible parts of watching someone loved die, and of the terrible weight of guilt that’s left.

    • Not my intention to make you cry but I appreciate that it moved you. I feel like the terrible parts are sometimes taboo but important to acknowledge for the surviving spouse’s healing process.

  4. I often talk to the women I see in my gyn practice about the anger, frustration, guilt and sadness that are all a part of caregiving. I’m glad you’ve read about caregiver’s and survivor’s guilt! You were in a really, really hard place!!! I’m glad you are writing about it and talking with other widows, too!

  5. Now that I am hands on caregiver to my mother who has AD I understand completely. I took care of my husband when he was going through treatment for HepC and my father in law when he was dying. Both were tiring experiences. Thankfully the treatment worked for my husband and my father in law was all physical ailment. When the brain is affected it becomes a whole new ball game.

    You sound like you were a great caregiver and are a wonderful human being. We all get tired, we all get angry. Forgive yourself

  6. Best advice I got after my beloved passed away. “Do what you need to do to get through” (developed what is now referred to as the Fudgesicle and wine diet). Most understanding comment. ” every decision you made you made from love”. It was true even the hard ones and the lesser evils. Stick your tongue out at guilt :p

    • Thank you H. I am familiar with your fudgesicle and wine diet, though mine includes cheese, salami, ice cream and whisky. And I will practice sticking my tongue out at guilt. That is excellent advice indeed. Thanks again for your comment and for stopping by. Hope to hear from you again.

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