At therapy this week, I told my counselor about the breakdown I had a week ago. The increased caregiving tasks had me feeling overwhelmed and I wasn’t sure how much longer I’d be able to do them without going mad. I cried to a friend and then cried with my husband. He feels awful in a variety of ways but said to me, with his eyes welling up, “You won’t be able to rest until I’m gone. I don’t know what I’d do if our roles were reversed.”

This made me sob harder. Our lives are filled with such horrible paths sometimes, aren’t they? I’m trying hard to enjoy the good moments while stumbling through the shitty ones.

After I told my therapist about this, she ended our session with advising me to “check in with myself” each day. How am I feeling? What do I need right now, but what can I actually get to fulfill that need? For instance, I really need a few days away from my reality. But instead, I’ll sit in the sun with a San Pellegrino lemonade and a handful of smoked almonds and pretend I’m on vacation for a few minutes. (Although it’s already fall weather here in Maine, so that might be changed to drinking a cup of delicious espresso and eating a piece of pumpkin bread….and dreaming of the lemonade & almonds and warmer days we had in the summer.)

The problem with me checking in with myself? My real feelings start to seep in, spill over, then gush out of me.

I am so angry. I have a LIST of things I’m angry about that don’t even include our current fascist POTUS and government, or local politicians who don’t think trans people should have the same rights as everyone else. That’s another entire list that just keeps getting longer and I’m sure it adds to the simmering rage many of us feel.

But my other list is about my life, the Healthcare system, my husband, caregiving, all the things that are currently affecting my family every minute of the day.

Since my last post, my husband finally came home after 18 days in the hospital and we were able to keep hospice care services. This was our goal for multiple reasons, but primarily we needed the tiny bit of extra help we get with hospice and the medications he takes are all covered under that umbrella. So I was grateful for keeping hospice for Wal, but also knew my caregiving tasks would increase.

I learned a bit about PICC lines and administering IV meds those first two days, made a few mistakes, but we finally have a routine. Every 8 hours, I have a list of procedures I have to follow. For any medical professional, this would be second nature–clean the table, take his arm out of his hoodie sleeve, wash your hands, gather the antibiotic & saline & heparin & alcohol wipes & IV caps, lay it all out on the table, unwrap every syringe, sanitize hands, uncap IV (PICC) line, wipe the end with alcohol, break the seal & uncap saline syringe, push any air bubbles out, screw onto PICC line, release IV clamp, slowly push the saline through, close the clamp, unscrew the saline syringe from IV, throw syringe away, wipe the IV cap with alcohol wipe, uncap antibiotic syringe, screw onto IV, release the clamp, VERY slowly push antibiotic into IV (5 minute push), watch husband get sicker as the antibiotic courses through his veins, close clamp, unscrew antibiotic, throw it away, sanitize hands, repeat saline process, then lastly heparin and finally top it off with a new IV cap and put husband’s arm back into sleeve.

This whole process takes about 10-15 minutes. It’s really not horrible, except when I watch him deflate and start to feel sick when those antibiotics go through him. He’s now drinking a bit of chicken bullion during and afterwards which seems to ward off the worse of the sickness.

It’s just…I get up at 5:30 every morning to take his first batch of meds out of the fridge to let them warm up for the 6am dose. This happens again at 2pm and 9pm. Some days? I honestly resent it. I shouldn’t, because this is what I signed up for–in sickness and in health and all that jazz–but I’m human and I can be angry at the whole situation. I think the combination of administering meds, bathroom duty, hygiene helper, appointment keeper, driver, cook and server, all just got to me. That and the fact that I’ve been putting my life on hold. I haven’t been “living in the moment” like I wish I could do 24/7. Instead, I’ve thought about the trips I can’t go on and the classes I can’t take right now. This is where the resentment lies and it’s not fair to my husband, nor to me. Someday he won’t be here and I’ll wish he was. My life will be different then and although I will have more time to go on day trips and possibly take classes, I’ll need to do it without him in my life. And that’s a weird thing to think about.

Finally though, over this past weekend, I found myself smiling more and once again enjoying the small moments of taking a walk or reading a good book or chatting with one of many loved ones I talked with over the weekend. When I checked in with myself those days, I could feel the stress I carry with caring for my husband, but I could also feel the lightness of joy in my chest. It’s hard to balance my emotions when I go about my day because it can feel like whiplash sometimes. But I’m doing the best I can, like we all do. I hope you can find that balance, friends.

I know loads of people hate that “finding joy” phrase, but fuck ’em. You do you, boo, and don’t worry what the rest of ’em say. Find that joyous moment and celebrate it. Eat those smoked almonds or cheesecake or greasy french fries, and wash it down with a San Pellegrino lemonade or a hot cup of chai tea or a sweet hard cider. Or watch a show, listen to music, read a book, dance in your kitchen. Do something that gives you a few minutes of happiness and swim in it. Soak it up and hold onto it until you can do something that gives you joy again. It’s not an easy way to be sometimes, but hopefully it can get us through.

Let me know what helps you through the hard times and what moments of joy do you hold onto it. I’d love to hear them. And as usual, hugs to y’all, friends.