Archives for posts with tag: caregiving is hard

I write a lot. It isn’t explicitly and specifically about you. …Or…well…maybe it is? I mean in the most general sense that sooner or later generalities land with us. Some particular thing or another, sooner or later, is going to strike you in a potentially eye-opening or insightful way. The odds are in favor of it. It’s literally how things like the cold readings of a side-show huckster or small town psychic down the road sound so convincingly knowing. Tarot cards. Fortune tellers. Salespeople.

I’ve got a friend who recently remarked how “spooky” it is that I so often seem to be writing about exactly what she’s going through, even though we don’t often hang out these days, and no longer work together. I pointed out that I write – often – in generalities and aphorisms that spring from a shared common human experience. Unconvinced, she pointed out that it’s “all the time, though”. (It isn’t.) When I laughed and reminded her how often she remarks quite conversely that she didn’t get my point at all, she shrugged it off and let the whole thing drop. I’m no mind reader. Most of the time my writing is relatively trivial; casual generalities and interesting (to me) turns of phrase that help me along my own journey. I’m glad there are a few folks (like you) who take time to read what I’ve written. It gives my writing a lot more meaning that it is being read.  (Thank you.)

…But. No, I didn’t write that because you… I mean, not you personally, is all. 🙂 People. Maybe you? Maybe that person over there? Maybe it was just an idea I had that sounded like something you’ve experienced for real, recently? Maybe someone you heard about through a friend of a friend? Maybe it was in a news article (that I also read) or a movie (that I also saw)? Just saying – it’s not you. More likely it’s me. I mean… I can at least try to make a useful or necessary change in my own behavior or in my own life. I can’t do that for you.

It’s very much not “personal”.

…Which is true of most things, actually, and that is probably worth thinking about further.

I tend to take observations and new learning to a bit of a meta place when I think things over, and even when I listen to song lyrics. It is the thing that makes some casual observation become a useful living metaphor (for me), or that allows me to apply some abstract idea to my own circumstances. Because I write in the same way I think, I’ve then opened the door just a bit wider that you might find some handful of words I’ve strung together to either be quite… pointed… or enlightening and useful. I’m not all that wise, actually – just another human primate doing my best to tidy up my chaos and damage and build a good life on the wreckage that came before. You, too? No wonder some of this “rings true”, eh?

Humans being human, each having our own experience, and somehow also all in it together.

I sit with my thoughts on the afternoon of what has proven to be an unexpectedly difficult day between lovers both after the same experience; a shared experience of calm, healing, and contentment. How vexing that we don’t quite get there! So frustrating to feel this unsteady and uncertain and uncomfortable. Try. Try again. Listen. Hear. Begin again. Fuck it all up. Apologize. Listen more. Try to say, but… Listen more. Try again. Do the damned thing differently. Sweep away the eggshells. Begin again. Assume positive intent. Listen more carefully. Begin again, again. No lack of love nor lack of will to try on, and listen longer. Just humans being human and sometimes failing to be our best selves. It’s hard. Caregiving? Yeah, sure, caregiving is crazy hard and demanding on a whole different level, but just now I mean more generally that simply doing our best in the face of everything we’re dealing with. Hard. At least it is for me, today.

I’ll keep practicing. Keep trying. Keep listening and growing from my mistakes. I’ll keep beginning again.

I’m sitting at the trailhead. I meant to be walking, but as I set off, my right leg buckled at the knee. I didn’t fall; I had my cane in my hand and steadied myself… but for the moment, I don’t trust my legs. Life, too, feels suddenly unsteady and unpredictable. I mean, I guess that makes sense; it is.

My thoughts careen through my consciousness. I didn’t sleep well last night. My Traveling Partner needed care during the night and woke me. I was groggy and stupid and not very helpful. I didn’t understand what was needed. Hell, I barely understood where I was in the first place. When my worthless efforts were abruptly dismissed, I attempted to return to sleep… It was nightmares, pain, and wakefulness from there. Less than ideal for the day ahead, which I took off from work to care for my Traveling Partner as he recovers from surgery. My consciousness is scattered, fragmented, and chaotic. I’m tired and fragile.

… I’m also doing my best…

I remind myself that this is only a moment. Temporary. It will pass, and change is. Nonetheless I feel low, beat down, and sorrowful. I’m tired and triggered, reminded of a time long ago and a very different earlier relationship, from which I am grateful to have escaped alive. This isn’t that, it’s just a challenging time and sometimes it’s hard to do the needful sufficiently well. I feel grateful for so many other things – I focus on the gratitude, the positives, and the kind, gracious and appreciative words my partner has shared over recent months. I breathe, exhale, and relax.

… Some things in life just aren’t about me at all…

My tinnitus rings loudly in my ears. My head aches. I observe the discomfort and let my mind move on. It doesn’t alleviate my pain to do so, it just prevents me from making my pain my whole world, for a little while, sometimes. My results vary.

I breathe, exhale, and relax. I sit quietly wondering what the future may hold, and where this path leads. I consider and reconsider what I really want in life, and contemplate whether the path ahead of me leads to that outcome at all… There are things I’d like to change. There are things I regret saying or doing (and not saying or not doing). It’s a very human journey.

… I think quietly about my Traveling Partner on this journey…

My partner pings me, frustrated, tired, and hurting. He can’t sleep and struggles to find any way to be comfortable after surgery. He’s pretty hard to live with right now (understandable), and has insisted that both the Anxious Adventurer and I leave so he can rest. We reluctantly do. What else can we do?

… Fucking hell, caregiving is hard

I sit quietly, recalling my Traveling Partner before his injury, before his pain became unmanageable. I think about him – and us – in the “beginning”. I wonder how to go about restoring that beautiful vibe, and wonder if it will slowly return because it’s who we are and how we love, or if life has changed us “too much” over time and circumstances? I remind myself, too, that my mood and thinking are colored by recent events and present fatigue and stress. I breathe and let go.

I make room for gratitude, and think about things that have gone well. Doing this is often enough to lift me out of a funk, maybe it will today?

…In any case, I definitely need to begin again.

I walked the trail in the chill of the morning. I walked with my thoughts and my tinnitus and my pain, contemplating how easily we “understand” each other without actually being able to truly understand each other. We’re each having our own experience.

It’s pretty easy to think I understand my Traveling Partner’s pain. I have pain myself, and it is chronic and a substantial part of my experience. But, and this is important, we experience our individual pain quite alone. I can’t feel his. He can’t feel mine. Our sympathy, empathy, and compassion are built on our good intentions, our desire to be helpful and understanding, and our perspective on our own pain, which is what we know. Our lived experience may provide us with useful insights, but it may also limit our ability to truly understand.

… It’s fucking hard sometimes…

Yesterday I watched the Anxious Adventurer express understanding of my Traveling Partner’s pain – through the lens of his own ordinary aches and pains, as if the pain of a spinal injury would compare at all. I catch myself doing it, and although the pain of my persistent headache, spinal arthritis, and degenerative disk disease in my neck likely get me closer to real understanding, it’s still not the pain my partner experiences. I can’t know that, I can only guess, listen when he talks about it, and do the work of being humane and supportive and kind. It’s fucking hard sometimes, especially just accepting the fact that truly we can’t know each other’s pain.

… Pain sucks and pain management is complicated by our very broken healthcare system, in which doctors also seem to lose sight of how little they can actually “understand” a patient’s pain, beyond listening, themselves.

We’re each having our own experience. Don’t be a dick about someone else’s pain. You can’t know what they’re going through, really, and it isn’t a fucking competition. It doesn’t matter at all whose pain is “the worst”. Our own pain is always the worst we’ve ever personally experienced, and if all you’ve known is occasional sore muscles or stubbed toes, you certainly don’t know anything much about pain. Be kind. Be patient. Be compassionate. Be gentle. People are suffering and hurting. You can’t know what they don’t share, and you don’t know much even when they do.

I hurt this morning. The chill makes my bones ache. I walk on. It could be worse. I’m doing my best not to take my own pain personally. I have my own way of dealing with my pain. It’s not always effective but it’s mostly enough, most of the time; a complex assortment of practices, medication, and pure seething anger about being in pain in the first place. I push through when I can. When I can’t… I cry. Like… A lot.

… It’s hard seeing my Traveling Partner in pain. I feel so helpless…

… My own pain is barely managed day-to-day…

I sigh and keep on walking. I stop to answer angry frustrated pings from my partner, who is in pain. Pain shrinks his world. It’s most of what’s going on for him, until he has his surgery and moves on to recovery and rehabilitation. It’s a complicated journey. I wish I could do more. I try not to be a dick about his pain and the way it affects him…

There’s another work day ahead, then one more, and a day to run errands… Then I get a short (but very needed) break from caregiving and from my partner’s pain, before his surgery.

… I still have my own…

I take a few minutes to write and reflect. It’s not satisfying. My Traveling Partner is awake and pinging me and needing emotional support. This is a difficult experience and I do what I do; I push my own needs to the side to provide support. I’m irked with the Anxious Adventurer, who hasn’t figured out a morning routine that respects my partner’s need to rest. I’m annoyed in a very human way because this affects my morning experience too. This shit is hard.

… I stifle my frustration. None of this is personal…

This is an endurance race, not a sprint. I try to look at the morning through the lens of opportunity for growth… I just have to begin again…

The air was still fresh from the drenching rain during the night when I stepped out of the car at the trailhead. Drops falling from the trees occasionally spattered my face and hoodie, which I sensibly wore thinking it might be a cool morning. I breathed deeply, filling my lungs with the rain-fresh air. I walked briskly, alone with my thoughts, my arthritis pain, and my headache. Only one of these things mattered much to me, the rest I did my best to ignore as inconsequential.

Yesterday’s appointments, first with my therapist, and later with my physician, were an interesting study in perspective. I showed up to both prepared to discuss stress and anxiety and how best to manage these lingering mental health concerns, only to be firmly told by both that my levels of stress and anxiety, at least under the current circumstances, seem quite reasonable and even appropriate. Well… Shit. I’m not nearly as well-practiced at managing reasonable-not-a-sign-of-mental-illness stress and anxiety. lol In each conversation it’s agreed that similar techniques and continued practice are helpful. No change to medications or recommendations. Just… Keep managing. Keep up self-care efforts properly. Keep breathing and keep cutting myself some fucking slack, eh? It’s still a lot to handle, but apparently that’s pretty fucking reasonable under the circumstances. It was peculiarly helpful to hear that.

…It doesn’t make things any easier…but it does take a bit of pressure off…

I’ve been hard on myself a lot lately. Sometimes my self-talk is pretty negative, even though I know how cruel and unhelpful that is. I’ve carried some shame and disappointment that I am not a more skilled caregiver for my Traveling Partner, when he needs so much from me while he’s been injured. I’ve labored under the additional burden of my disappointment with myself over not having more energy, more capacity to labor on, more ability to get everything done, every day. I’ve been angry with myself just for not being younger, more able, and for needing rest and care, myself.

…My Traveling Partner, on the other hand, has been kind and appreciative, and generally far more impressed and grateful for my help every day, so this shit is definitely me…

I breathe and keep walking. My Traveling Partner pings me, letting me know he’s awake. I stop on the trail and exchange a few messages before continuing. Time to head back to the car and start the work day. There’s a lot to do, and it sounds like my partner’s son will arrive later, sometime this evening.

Fuck, I’m so tired… A good night’s sleep doesn’t restore my energy these days and every day seems to start with a longer list of shit that needs attention… And I keep putting myself last on my list! Not helpful. lol No wonder I’ve been stressed and anxious. I breathe, exhale, relax… And get ready to begin again.

This is all pretty real stuff. Life. Sometimes it’s a bit much, but it’s better than the current alternatives. I breathe, exhale, relax, and walk on. I’ll get where I am going, eventually. It’s a journey. Incremental progress is still progress. One step forward is still forward momentum. Making a point of being kind to myself doesn’t take any time or cost any money. Worth doing and I’m sure it’ll be helpful stress-management-wise.

… This too will pass…

… It’s time to begin again.