How do you not lose yourself when you're a caregiver?
I had no idea! But here are 6 lessons I learned that might help you, too.
FYI: Today’s post is my gift to you. The majority of posts are for paying members. Words, Wisdom & Conversation by K.R. Dodd is proud to be a reader-supported publication. To receive new posts and support my work, please consider becoming a free or paid subscriber.
First, a very warm welcome to all my new subscribers. I know how much everyone has on their plates these days and I’m thrilled that you’ve chosen to spend some time with me. And thank you to other writers here on Substack who referred me to your readers. You rock! And there’s enough abundance here for everyone.
If you’ve been with me for a while, you will no doubt have noticed my absence over the past month and a half. For that, I am truly sorry (*keep reading to see my gift to you*). Just when I thought life couldn’t get any more challenging, guess what? It did!
Last August, my husband was diagnosed with inoperable cancer. For four months he soldiered through chemotherapy, immunotherapy, multiple trips to the ER, blood clots, an awful fall… Well, you get the idea. The good news? The tumour shrunk to virtually nothing. His oncologist said he’d never seen such an amazing response! With this success, Glen became a candidate for surgery. We were getting him strong enough for an 8-hour surgery, having the required diagnostic tests completed, and then we were to meet with the surgeon.
Fast forward to February 29th (yes, this leap year will forever be etched in my brain) when he was admitted to hospital with bi-lateral (in both lungs) pneumonia. To make a long story shorter, he eventually ended up in ICU in a medically induced coma, on a respirator for four days and a night. I honestly feared that he’d never come out of being intubated. He remained in ICU another 5 days.
In the 43 days that he was in hospital, I went in every day but one—when I thought I was developing a cold that turned out to be just allergies.
CAREGIVER LESSON #1: Don’t do that! Take a day off a week and swallow the overwhelming feeling of guilt when you do.
By the time I made food to take him because he wouldn’t eat hospital food, drove to the hospital from our rural home (with an 8-month-old puppy in the back) visited him, and then drove back home, it was a 4-hour found trip. On the way back I did errands, etc. I would arrive home late afternoon, utterly and completely knackered. And realized I’d forgotten to eat.
CAREGIVER LESSON #2: Don’t do that! Learn to carry snacks with you in the car (my current fave are Nori seaweed snacks) and force yourself to eat at least half a sandwich. Don’t do what I did and become the poster child for Lose Weight Now; Ask Me How.
Anyhow, when I got home, I’d pour myself a glass of wine practically before I took off my coat. “Dinner” might have consisted of crackers and salmon spread.
CAREGIVER LESSON #3: While crackers and spread were fine, I’m actually a pretty healthy eater, and I had a craving for salads. Trouble was, I’d end up throwing all the lovely veggies out because I didn’t have the energy to wash them and make them into a salad.
TIP: I started buying two Whole Foods dinner salads at a time. Here in Canada, they’re $11.99, but each one did me two meals and came complete with croutons, dressing, protein, etc. If the second half was a little light on protein, I just put a piece of pre-marinated salmon in the oven and added that. I actually started looking forward to my dinners alone in front of the fire with Ragdoll cat, Bello and Gracie.
Then I’d fight to keep my eyes open until 9:00, the earliest I could put Gracie in her night crate. Sometimes I slept; a lot of times I didn’t. But whether I did or not, I woke up every morning so tired I could barely drag myself out of bed. Fortunately, I didn’t have a choice; Gracie needed to pee!
CAREGIVER LESSON #4: One thing I did right! Although I gave up my twice a week 7:30 a.m. Pilates during the 43 days, I walked Gracie for an hour every morning (for me) and later in the day, gave her a run off-leash to chase a ball at a park near the hospital (for her). That hour in the morning that I walked with her alone, focused on her training and 100% present, was my best therapy. I also went to her once-weekly puppy training class, which fortunately was just blocks away from the hospital. I’m proud to say that Gracie is now on her way to becoming a therapy dog to visit hospitals, hospice, chemo wards, children, and seniors. 💓 🐾
In summary, I’m not sure where those 43 days went. They came and went in what felt like an endless cycle. I lost track of the days. I nearly lost my husband. I lost my ability to write. I lost my passion for reading (I was either too tired or couldn’t focus). But I journaled each morning so I wouldn’t lose myself. I’d like to think it helped. I don’t know yet; I’m still figuring it out.
CAREGIVER LESSON #5: Do something, anything (! ) to keep from losing yourself. Say yes to invitations as much as your energy will allow. Accept food and help from every dear soul who offers it. Learn which ones really mean it when they say they’ll do anything for you. In my case, they all did. I’ve been blessed. Just as it takes a village to raise a child, it takes a village to care for a loved one. Or to go through widowhood or divorce. Or losing a child. In our tiny seaside village, we’ve all been through that and more together.
Now that my husband is home, my life as a caregiver has changed once again. He is on oxygen 24/7, which means that any time we go out, I have to load his walker and oxygen tanks into the car. It means everything takes many times longer than it used to. It means I have a large oxygen-making machine that sounds like a small plane warming up for takeoff in my livingroom. There’s another machine to refill the tanks that I put outside because I couldn’t stand the noise. But this is what he needs to live until he can perhaps withstand an 8-hour complex operation to deal with the cancer that he still has.
As a dear friend texted me, “It’s going to take some adjusting too, honey.” Amen to that, my fellow caregiver! You will never stop adjusting. That’s just your new normal.
And finally, CAREGIVER LESSON #6: Read books written by and for caregivers. In my case, I totally resonated with Caregivers Are Mad As Hell!: Rants From the Wife of the Very Sick Man in Room 5029 by journalist Ann Brenoff. She doesn’t sugar-coat it. Her story might make you weep, but it will also make you laugh. I did a lot of both. The author also talks about private Facebook groups where you can get support and chat with other caregivers who feel as you do.
Nobody else will truly know what it’s like to be in a caregiver’s shoes unless they’ve been through it. That isn’t their fault; it just is. People will laud you and say they don’t know how you do it. If you’re a caregiver, you understand that you do it because you have to. You do what any decent human being would do, regardless of how complicated the relationship is with an elderly parent, a spouse, or other loved one. Most times, your life changes in a heartbeat and, in my experience, neither the patient nor the caregiver is a saint.
If you had a difficult or complex relationship before your loved one becomes ill, it will probably get more complicated. You might harbour secret hopes that the ill person, having reached rock bottom, might have changed. I’m sure that sometimes happens. But in all likelihood, when someone is critically ill, you as the caregiver, Dear One, will have to make most of the changes. Why? It just is.
Each of our caregiving journies will be unique. But while the nuances may be different, the underlying challenges and feelings will be the same. I’m not a psychologist and I’m not qualified to give you advice on your situation. All I can do is share from my own experience and hope that you might feel less alone as you go through your own caregiving experience.
Take what is useful and throw away anything that isn’t. Please don’t judge others harshly for venting or feeling the way they do. Most of all, please don’t judge yourself, or feel shame. We don’t come with a handbook for caregiving. It’s kind of a learn-as-you-experience. Thank you for being here and reading about mine 🩶
And now for that gift I mentioned! To thank you for your understanding of me being absent for a month and a half, for my paid subscribers, I will manually add another two months for free to your subscription. Thank you for being here!
If you’re a free subscriber—thank you for reading this—may I offer you 10% off an annual subscription?
If that’s not for you right now, no worries! My monthly readers’ newsletter will always be free to read.
QUESTIONS: If you are (or have been) a caregiver to a loved one, what do you find the most challenging? Rewarding? Please click on the Comments section below and offer any caregiver tips others might find useful. Or just come and say hello!
Words, Wisdom & Conversation by K.R. Dodd is a reader-supported publication. To receive new posts and support my work, consider becoming a paid subscriber.
Welcome back! So great to see your words of wisdom.
Thanks for sharing so openly.
What a great newsletter, full of thoughtful and helpful tips for caregivers. Love how you shared your journey as one, and how it continues. Personal, honest, and brave. I wish it was easier for you, Karen. Hope Glen continues to improve. And please heed your own advice, take breaks without feeling guilty. Caregivers can break before those they care for. ❤️