10 Survival Tips for the Caregiver (So to Speak)
Oh, hey, hi! How are you? It is weirdly warm and rainy here in our part of Pennsylvania today. I’m writing this in a near-empty Panera Bread (coronavirus!), after having purchased toilet paper online because we ran out at the house (children!) and all of our stores have been emptied of it (coronavirus!). I just ate a bagel with my bare fingers that had not been sanitized ahead of time, and I expect the dry coughs to start shortly.
Last week’s progress appointment with Mom’s neuro-oncologist was odd. Here’s the thing: Mom can’t walk more than a few steps at a time. Last week, she couldn’t do even that–couldn’t support her own weight at all–and after an afternoon of physically lifting her from wheelchair to car to wheelchair to seat et al, we expected to hear the worst from her MRI results. But her tumor is stable. Can you believe it? It’s just that her body is failing more quickly than the tumor is advancing. She’s also not always recognizing where her body is in space (confusing her right with her left limbs, for instance, or not knowing when her body has been seated because she thought she was still standing). Mom wants to continue with treatment, though, so on we go. Her physician told her that we’ve done all that we can do, and at the next appointment in 6 weeks (it’s scheduled for Easter Monday), he’s going to officially recommend stopping treatment altogether (last week he just hinted around at it while we all watched Mom with tears in our eyes to gauge her reaction). So: I touch base with her nurse this week to see how she’s doing. We plan on Avastin on Monday, even if that means hiring a professional transport service to get her there and back. She has no hospital bed, so she’s sleeping at night on her Lift recliner, but she swears it’s comfortable. The birds are back again, and she’s happy to watch spring return. We sat yesterday and watched the squirrels and HGTV and she called me “babe” like old times as I left in the late afternoon.
So on we go.
Here’s something I’ve been thinking about: I spent the day or two following that appointment in a fog (this is the norm after these appointments–I’m super down for about 24-36 hours afterward, then re-enter life as usual), and in that time, two people approached me about their own “bubbles.” And all I can think is, what advice could I give someone helping a loved one through illness, if she wanted it? How can we help those trying to care for someone else?
Here are my tidbits–10 things that have helped me in the past 18 months (when I actually used them, of course). Now, keep in mind that because Mom wants to be in her home (with amazing caregivers she loves), I’m not with her full-time–I’m in a strange spot of traveling between our two homes and playing point guard for all things family/mom/administrative/academic/medical/feline in both of those places while trying to not drop-dead panic–and I recognize that this is still not as difficult as it is for people who care-give a loved one full-time without help. I speak only from my own experience, but still hope I can offer some relief, in my own way.
If you see something that’s not on this list you feel you should add, please share in the comments. I’m curious, too.
1. Exercise. This may seem like a no-brainer, but do something each day to get the blood and oxygen flowing. I haven’t been consistent with this since Mom got sick: some months I alternated running with strength training at home, and during others I did a little yoga or just walked the dog on a slow loop around our neighborhood each day. There were also stretches and stretches of weeks when the most I did was lift my coffee mug to my face each day, and I was a grumpy, depressed mess of anxiety that whole time. Moving changes your whole headspace for the better. Just move, even a little bit. (I hear this is also good for the butt, but I’ve yet to see proof.)
2. Get outside first thing in the morning. You need to remind yourself that life exists outside of your bubble before you spend the day inside of it. If you work from home or care-give full-time, do something to get you out for a bit early in the day: walk the dog, take your time getting the newspaper, get to the bus stop with your kids five minutes earlier than usual. If you drive yourself to work, park in the back of the lot and walk slowly to your office building. (I dare you to skip, just to give those co-workers something to talk about.) Just get the sunshine and breeze on your face, then start your day. Trust me on this one.
3. Find one person to whom you can vent. This can be a friend, relative, or therapist, but it’s best to choose someone just outside of your loved one’s tiniest circle: the ones closest to the epicenter don’t want to hear what you have to whine about because they’re thinking it, too. But it’s good to talk to somebody who’s patient enough to not mind when the venting turns to whining, or weeping, or repetitious worry. Bonus points if that friend has a tendency to use heart emojis in all her texts. Those help.
4. Find one person with whom you can be snarky. This is a different person than your #3 buddy, but it’s also a good idea here to choose someone who’s a) just outside of what’s directly going on with your loved one, and b) has a thick skin and a high level of tolerance for dark humor. Because trust me: your sense of humor is developing a bit of a Tarintino-ish tone about it. Bonus points if that friend texts you about the terrible things happening in politics (our best option is going to be Sanders? Really?) and the run on hand sanitizer at the grocery store (coronavirus!) just to remind you there are problems other than yours happening in the world.
5. Find someone who will give you hugs on an as-needed basis. For obvious reasons, I highly recommend a close friend or spouse, most especially a David if you have one around. This #5 person may be the same person as #3 or #4 for you, and if so s/he is a gem of a human being. But please don’t expect one person in your life to be All the Things for you–that’s what got you here in the first place. Being All the Things is hard.
6. Build in small things to look forward to. The hardest part of caring about/for a loved one with terminal illness is waking up each day knowing it’s probably going to be one filled with worry or sadness (or both, if it’s the day after the appointment with the neuro-oncologist) and not knowing when you will ever stop feeling quite so worried and sad. (Sad fact: If you’re already down, staying down will surely keep you down). So build in some spots of happy for yourself: a quick lunch at the Thai place with your David, a night out with a friend or two (bonus if it’s the friends in #3 or #4). It doesn’t have to be anything huge–it’s more about the reminder that life is so, so good: honestly, after a hard day, I often just look forward to the 20 uninterrupted minutes at the end of it I might get to curl up on the couch with David or one of the kids and my book. Just give yourself some sort of happy as you can.
7. Treat your person who’s suffering. When Mom was able to get out of the house, we’d try to plan small things for her to look forward to: a pedicure, or dinner out. Now, when Mary and I visit Mom, we simply bring some small fun thing with us each time: usually that’s a food treat like a milkshake, or her favorite doughnuts, or an iced coffee. Grocery store flowers are good, too, or a new magazine if your loved one is up for reading. Right before Mom got sick, she’d started bringing with her a good bottle of wine when she popped by our house, and it made my day to see her standing at my door with her purse over her shoulder and a paper-wrapped bottle in her hand (“I just stopped into the Class Six after I was grocery shopping,” she’d say, every time. And, every time: “They didn’t have much of a selection.”) Surprises make people happy, and they don’t have to cost much at all.
8. Check in on your own loved ones. David and I were talking recently about the kids being sad after a tough visit with Mom. He mentioned something pragmatic about how the kids are learning about the circle of life–he didn’t mean it, I don’t think, to sound cold, but my sad little heart didn’t want to hear anything logical, let alone related to songs from The Lion King. I said to him, “Look: our job right now is to hold the kids when they’re sad. My job is to hold my mom. Your job is to hold me. That’s it.” And I mean that: if you’re going through this, check in on the people around you. You’re in your bubble, but so are your kids, and your close relatives, and even your matter-of-fact husband. Hold them all close.
9. Do not start drinking too much. Even if you do have a stash of bottles ready to go because your mom was so generous when she visited: drinking will only feed the Debbie Downer tendencies. Same goes for too much use of your phone/junk food/Netflix/The Bachelor. The escape feels good–the anxiety hangover does not. Refer back to #1 and #2 instead.
10. Go to bed early, every night. Don’t argue with me about this one. You need to sleep (because you can’t). Listen, I know: you hate to give up on the day, because if you go to bed, it just means you’re closer to having to wake up and do it all over again tomorrow. And I know that when you do finally put down your phone and go to bed, you’re up all night with Anxiety Brain. Or you manage to fall asleep, but then you imagine the phone is ringing, or you get nightmares. Or the nightmares elude you, but the kids are coming in because they can’t sleep. You’re exhausted and can’t fix it. I get it. But do this: just go to bed eight hours before you have to wake up the next morning. Every night, I mean it: climb into bed eight hours before the alarm, read a couple pages of a book, then turn out the light. At least try to get your sleep (because no sleep, like too much drinking, just welcomes Debbie Downer to keep her mopey butt parked on your mental couch). Eventually you will sleep, I promise. And it will help.
More people are starting to trickle in to this Panera, which is my cue to leave. But the sun is starting to shine through the clouds, kids. (As Saoirse said to me yesterday, “How’s that for a metaphor?”) (Also? My 12-year-old uses the word “metaphor” in conversation.). The puddles are beginning to dry up in the roads, which is a good thing because I ignored the rain pouring down this morning and decided to wear ballet flats instead of my wellies (the ballet flats were happier. See? The little things). I can’t see Mom today because I’ve got to be close to home for the kids, but I’ll give her a call once she’s up and try to think of something fun to talk about. So isn’t that good? The sun is shining and spring is coming and Mom still calls me “babe” when she talks to me.
Take care of yourselves, friends. On we go.