Over the past few weeks, my mother Sally has shared the story of caregiving for my father who was diagnosed with Stage IV cancer in 2003 and then suffered a massive, debilitating stroke in 2008. He requires ’round-the-clock care which she provides exclusively. If you missed her recollections, you can catch up here:
- The Caregiver Series : The End of My “First Husband”
- The Caregiver Series : “Life as I Knew It Was Over”
- The Caregiver Series : “Normal Becomes a Beautiful Word”
- The Caregiver Series : The Death of a Brain
- The Caregiver Series : My “Second Husband”
- The Caregiver Series : What the Caregiver Needs
Before we move on to another story, I thought I would offer some reflections from my vantage point as Sally’s daughter. When my mother and I started her guest posts, we did so because we believed that there were people out there who could benefit from knowing they are not alone in their journeys. Being a caregiver can be so solitary and alienating, and we wanted to reach out a hand even if it was just an online one. I hope that my reflections can do something similar for others as well.
So, here are my reflections, or some of the lessons I have learned through my parents’ journey:
The Doctors Cannot Tell You What Is Going to Happen to Your Loved One
Shortly after my father was diagnosed with Stage IV cancer, one of my best college friends gave me what I now know was the best piece of advice anyone offered me during that time. Her mother had gotten a terminal breast cancer diagnosis some two decades prior and, despite all the odds, had beaten the disease.
“Kristine,” she said, “The doctors cannot tell you what is going to happen to your father. They can give you probabilities and statistics but they can’t tell you what will happen because they don’t know. Now, that can be bad because lots of cancer patients end up dying even though their statistics were good. But it can also be good because he could end up beating the cancer despite all of their really bad numbers.”
It was a great reminder that although things looked and felt dire, we had no idea what would happen next and that we were best served to take all of it one moment at a time.
Even After Your World Gets Turned Upside-Down, You Find a New Normal
If you have dealt with a devastating illness, accident or death, I suspect you know what I mean here. You go through tremendous shock, pain, grief, etc. You may reside in an emotional hell for a period of time. But one day, you wake up and realize that your worldview now encompasses your new reality. Instead of the incident or illness being something outside and foreign, it has become part of your experience and who you are. You still feel pain, perhaps, and that pain may still be very acute. But it is no longer something foreign or new.
When Your Loved One Requires 24/7 Care, You Cannot Be a Sprinter
Loving someone with brain damage is not a sprint. It is an endurance event of the most unusual sort. Early after Dad’s stroke, my siblings and my mother and I would jump with every new symptom, every new issue. If he went in the hospital, we were there.
We obviously still care about his well-being, but for the sake of our health and families, we have had to dial down our responsiveness. I can’t speak for my siblings, but my touchstone now is whether my being there would be helpful to my mom.
Losing Someone Slowly Is the Most Difficult Way to Lose Them
Have you ever heard of the term “ambiguous loss?” I’m not going to lie – I first heard the term on the TV show “Pretty Little Liars.” But the idea is that losing someone partially – like to a stroke or dementia – presents challenges that losing someone entirely does not. (I am not “ranking” pain here – just saying that our situation presents unique issues.)
I lost my Dad four years ago. The man who raised me is gone, and he’s never coming back. There’s a new person in his body and I love that person very much. But I have a different relationship with that man than I had with my Dad. This new man is more childlike, and I have almost a maternal relationship with him. It may be that because so much of his behavior tracks with the behavior that my children exhibit, I just naturally fall into that role. I try to not resent the situation, but instead just live in it and accept it for what it is.
But then Father’s Day will roll around. Or he will have a birthday. And I’m stuck in the card aisle crying, because how do you buy a card for someone who can’t really do anything? I mean, all of those “Dad” cards are about grilling or golfing or bowling or drinking beer. My Dad doesn’t do anything anymore. He can’t really read, anyway, so it just feels like a waste to buy a card. But not buying him a card feels worse. It feels like a denial of his humanity, as if because he isn’t who he used to be, he isn’t anyone anymore.
A few holidays ago I started donating money to a golf tournament and scholarship fund in memory of his best friend who died suddenly. My mom can tell him what I’ve done, I know that the pre-stroke and post-stroke Dad would both appreciate the effort, and I am using my money for a good cause instead of buying him things he can’t use.
Losing Someone Slowly Is Also the Very Best Way to Let Them Go
When my father had his stroke and was barely alive in the Neuro ICU, I held his arm and said everything to him I needed to say.
This past summer, while on vacation, he had my mom call me into his bedroom so that he could tell me what he wanted me to know before he passed.
I feel so damn lucky for those moments.
I’ve lost people suddenly and tragically before. The gift of saying goodbye … I wouldn’t trade it for the world.
Sometimes You Just Have to Feel Sorry for Yourself
It would be super easy to never let myself feel pain or resentment because, after all, my Dad and Mom have things so much worse. But here’s the thing – when my Dad had his stroke, in some way, I lost both parents. My mom is amazing and she does more for all of us than most people who aren’t caregiving do. But, still, it’s difficult to ignore the things she can’t do.
My parents can’t come into my house unless my husband is here to get my dad in the door. When my second and third babies were born, I didn’t have a mom who could help out the way she and I would have liked, because my father required her first and foremost attention. We don’t get to go on mother-daughter weekends or have spa days together. She can’t even stay overnight in my home because it’s not compatible with his needs.
So, even though I am nearing forty, a little piece of me gets childish and resentful and angry sometimes. I let myself feel whatever I’m feeling, cry if I need, then move on. I won’t shove my negative feelings down because I “shouldn’t” feel that way. I feel what I feel. I just try to keep a little perspective and be grateful for what I do have and that helps me maintain my balance.
Watching A Parent Care for Her Spouse Teaches You More About Love Than Just About Any Other Experience Could
If watching Mom care for Dad has taught me anything, it’s that when hunting for a spouse, we shouldn’t ask ourselves, “Can I spend the rest of my life with you?” but instead, “Are you the one I want around when I die?” Because those vows may say “for better or for worse,” but most of us go into the institution pretty confident that the better will far outweigh the worse.
That’s not guaranteed.
My parents have shown me that love lives in actions. Love is commitment. And, commitment is showing up every day and every moment. Love is not beautiful in a romantic, Hollywood-sense. It’s being there for the ugliest, darkest days that your relationship brings, and then staying there and living in those moments.
When my father called me into his bedroom on vacation to say what he needed to say to me, one question he kept asking me was what I would tell my children about him after he died. “Stories,” I said. “I’ll tell them stories about you.”
Despite all of the ugly memories and painful experiences the past nine years have generated, I know that I have been witness to a breathtakingly beautiful love story.
I think that’s what I’ll tell the kids, Dad.