Archives for posts with tag: caregiving is hard

I woke to the overhead light above the bed shining in my eyes. My “alarm” went off without waking me, the lights reaching full brightness before I finally woke. This is rare for me. I shook off my grogginess, literally shaking my head, then shimmying my shoulders, trying to shake off the last remaining sleepiness. I dressed and headed for the door. My Traveling Partner was already awake, already drinking coffeee. We exchanged pleasant words, and I kissed him before leaving the house to head up the road to the more distant co-work space. It’ll be more suited to the meetings I’ve got today, and I’m grateful to have the option.

The morning is a mild one, damp with recent rain, and chilly but not cold. The sky is cloudy, with stars peaking through in places. No sign of the northern lights this morning, but I do look. Ordinary enough, and an unremarkable beginning to a new day.

I turn onto the highway, and find myself in thick fog. Visibility is obscured such that even the big pick-ups with fancy extra lights at full brightness are not revealed in the oncoming lane until they are about 50 feet away. Fairly hazardous driving conditions, and I make a point to drive safely, and at a reasonable speed for conditions. Somehow, I still manage to find myself ahead of all the traffic, out in the foggy darkness. The world looked surreal, unformed, and ready to be created by pure will and imagination. I entertained myself with fanciful notions of “making the world”, as I drove through the fog and the darkness.

…So much is obscured by the fog…

I get to the office, get set up and settled in, and the day begins. I sigh to myself. This feels comfortable. I like things routine and familiar. I like things easy. I don’t think these preferences are unusual, but I have also learned that although I am not alone in having these preferences, they are not at all “the only way”. Embracing change has done a lot to free me from the terror (no fooling), anxiety, and stress of enduring other people’s choices, preferences, and chosen paths. One example? I like to get moved into a place, figure out where things go, and then fucking leave them there… for years. I don’t have a personal need to rotate the displayed art, or move the furniture around based on the circumstances, or change how the kitchen is organized. If there’s no clear and obvious need to make a change in my surroundings… I don’t.

I like having a clear mental map of my living space. I like being able to navigate in the dark during the night without stubbing a toe, or banging a shin, on some object I didn’t expect to be where it was. I am adaptable enough – I can get used to such changes with relative ease, and I try not to bitch about changes that really don’t matter. I’m not actually particularly spontaneous or interested in purposefully making changes for the sake of novelty or “just because”… But some people are. Even some people dear to me. We’re each having our own experience. We’re each walking our own path. My household may not be a democracy – but it’s also not an autocracy or a dictatorship. It’s more a… merry band of chaotic anarchists trying to avoid violating personal boundaries and doing what we can to live together harmoniously, with occasional outbreaks of “my house/my way” occuring on occasions of frayed nerves or in stressful times. I mean… that’s my perspective on it. My Traveling Partner and the Anxious Adventurer likely have their own perspective, and surely have their own experience. We’re all doing our best, and trying not to be dicks to each other.

I don’t like change. Yep. I’m one of those people. On the other hand, I recognize that change is. Change doesn’t give a fuck about whether I like it or not. My Traveling Partner has learned to be kind and considerate and to discuss his ideas for switching things up in shared space before acting on them. (I’m pretty sure he’d happily rearrange all the furniture in the house some afternoons just to see how something might look, on a whim, multiple times in a given year, were it not that he truly cares about my mental health.) I’ve learned to be open to discussing how things could be different or better with some change, and to be open to trying things out. It’s been healthy for me, although sometimes stressful. When my beloved got hurt, and change was necessary to accommodate his needs, I made a point to remain open, to adapt, to keep my stress to myself long enough to allow change to have its way with me in the moment, and to accept that change was helpful and necessary. None of that is to say it was easy. There were verbs involved. I had to work at it. I sometimes cried privately over silly things that stressed me out and were of no real consequence. I also survived all of it quite easily. There was a lot to learn there for me. I’m still processing some of it, and now that my beloved is back on his feet, and beginning to make the kind of progress that puts him back to work in the shop, happily puttering and doing projects, and beginning to return to some kind of normal… there is more change. More opportunity to be open. More practicing required to manage my stress and anxiety.

It was this morning that I realized that some of my anxiety is due to my Traveling Partner’s increasingly rapid improvements, and the return of more and more of his capabilities. I’m relieved, yes, definitely. I’m grateful and encouraged. I’m delighted. I’m proud of him. I’m also having to deal with the anxiety that I experience in the face of specific kinds of change. He’s now able to reconsider some of the accommodations we’d made when he was most disabled… and to consider others that would be better for him now. He’s also able to just go ahead and do most of it himself, and some of my anxiety is part of letting go of more and more of the caregiving. I don’t get why that would cause me stress, but there it is; some of my anxiety is coming from this gradual resetting (again) of shared expectations of ability, capability, and limitations. New boundaries. New needs. Differences. I feel unsettled in spite of how much I wanted to see this day come.

Human primates are weird.

I breathe, exhale, and relax. It’s a new day. It’s a new beginning. We’re each having our own experience. We’re each walking our own path. Some people like to step on all the cracks on a sidewalk, other people hop over them, still others think any such foolishness is unnecessary and a waste of time. Humans being human. I smile to myself, grateful to see my beloved making progress. I set down some of my baggage, and feel lighter for having done so. It’s time to begin again.

I got home yesterday afternoon, a day early. My Traveling Partner needed me; the careful plans intended to support his care for a couple days unraveled, so of course I hastened home. I was definitely annoyed at the necessity, and actually angry about the cause, but I didn’t (and don’t) hold any of that against my partner. He still needs considerable care, although he’s making quite a lot of progress. It wasn’t any fault of his that the backup caregiving fell through.

As soon as I got home, I started completing tasks that should have been handled in my absence: bringing the trash cans back from the curb, picking up the mail, opening packages that had been delivered,  and preparing a hot meal. Simple stuff. Routine and necessary, basic adulting and household upkeep. I’m still aggravated that none of this was handled. On top of that, and an indication of the basic lack of consideration and manners involved more broadly, I haven’t heard a single word of apology (from my partner’s son) regarding the necessity of my early return home. I’m annoyed by that on a whole other level. I feel like I don’t personally ask much of my partner’s (adult) son, and the disrespect and lack of consideration is seriously bothering me.

I sigh to myself. I have better things to do with my time than be aggravated by his bullshit, as annoying as it is. The Anxious Adventurer will find his way in the world eventually. I’m definitely feeling pretty aggravated with him presently. I let it go, again; it’s not personal, he’s just got a lot to learn.

I started down the trail this morning happy to be home, in spite of the early return. I’d stay home for my solo time if that were presently feasible, but my Traveling Partner can’t easily go elsewhere, for now. If I need solitary time, I’ve got to go somewhere besides home. Oh, well, I’ve got my walks and a few hours on weekend mornings that I can call my own. It’s tempting to waste time wishing I weren’t in so much pain, but it’s not helpful to bother with wishes. lol I walk on, grateful to be walking. Grateful for a good life and a loving partner.

I’m stuck under the limited cover of some evergreen trees, and it’s raining again. I’ll wait it out and finish my walk. Daybreak is almost here, and I’ll enjoy finishing the walk as dawn becomes a new day. I’ve got a bit of shopping to do, getting things together for Thanksgiving, and an errand to run for my beloved, then home to catch up all the housekeeping before it’s time to begin a new work week. Too much of the burden of the day-to-day maintenance of the household falls to me these days, and I tire easily, but I have the experience to recognize the need, the will to get shit done, and the considerate nature to want to. So, I do. I don’t resent the effort, I just have limitations and also needs of my own. It’s frustrating when I just don’t have it in me to get it all done, and I reliably choose partner, hearth, and home, over my own needs when I begin to run out of energy. That has consequences, and I know it.

My beloved encourages me to care for myself, but there truly are non-negotiable tasks that must come first. When my partner has fully recovered, I know he’ll do his part and also “make it right” with me; he loves me, and that’s who he is. I know how frustrating it is that he can’t do more himself right now; some of what he’d be doing if he could, I’m simply less skilled at, though I do my best.

The one detail that does cause me some resentment, is having to do more work for a third person in the household, instead of enjoying less work because there’s a third person in the household. I breathe, exhale, and relax; no point holding on to that negativity. It’s a temporary situation, and the less help I get, the more temporary it’s likely to be. That’s just real. I think for a moment how often I ask myself “how can I be helpful right now?”, and wonder if it’s strange that I do?

I shake off my irritation again. I have other experiences to spend my time on. I don’t care to be mired in bullshit and drama. There’s too much to do, and a holiday ahead. There’s a break in the rain, and I get to my feet and stretch. It’s already time to begin again.

Yesterday was… difficult. My Traveling Partner was in pain after PT the previous day and feeling really uncomfortable and cross with the world. Understandable, and honestly, I generally wouldn’t mention it in any specific way, but the results affected me quite directly. The peace of my morning was quickly wrecked, and before midday I was seriously wondering if I’m even cut out for being in a relationship or enduring cohabitation at all. It was that kind of day.

… Caregiving is hard…

I love (adore) my Traveling Partner with an abiding passion that can be described pretty accurately as “ridiculous”. It makes no damned sense that I love him so. Hard days are hard. Bad moods feel…bad. Hurt feelings hurt. Love isn’t some magical effortless fairytale condition that leaps from eye contact to happily ever after. There are verbs involved. Effort. Real work. Personal growth over time. Compromises and changes. Fucking hell, it’s an unreasonable bit of work involved in deepening and maintaining intimacy, especially under trying circumstances. G’damn it’s worth it though, and most of the time that’s obvious.

I breathe, exhale, and relax. The day ended pretty well, though my beloved was still cross and miserable. We talked over the things that mattered. We sorted some stuff out. We called it a night in a good place with each other, in spite of his continued pain and discomfort. It’s a new day, today. A new chance to begin again. Love is worth the effort we make.

I stare into the foggy autumn darkness. It’s awhile yet until daybreak, but the work day begins pretty soon. I lace up my boots and add gloves and a scarf. It’s chilly this morning. I’ve got my cane and my headlamp. I finish my coffee. It’s time to begin again. Again.

I’m sitting quietly at the trailhead, waiting for the sun. The car parked behind me is rather annoyingly playing their radio loud. Talk radio. Super annoying. I mean, I sure don’t care that they’re passing the time listening to their radio, but for real? Turn that crap down so no one else has to listen. I’m not here for that.

I sigh quietly and think about what it takes to “find peace”. It isn’t really a “finding”, is it? It’s more of a creating, building, and sustaining. There are verbs involved, rather a lot of them. I breathe, exhale, and relax. I focus on me, and this quiet moment. I listen to the passing cars on the highway. I chuckle when I think about “instant pudding” as an analogy. The point being that it isn’t actually “instant”, at all – just pretty quick, and relatively easy. (It’s also not very good.) I sit with that thought awhile.

My thoughts wander to my Traveling Partner, and I wonder if he finally managed to get some good sleep? He’s been progressively reducing the dosage on medications he’s working on discontinuing, and the process sometimes leaves him restless, cross, or unable to rest (or all of those things together). What a shitty experience! Night after restless night… I often wake briefly when he wakes, but last night the only thing waking me was myself, when I changed positions and inadvertently wrapped my CPAP hose around myself awkwardly.

The first hint of daybreak begins to light the edge of the eastern horizon; a new day. I sigh contentedly and, grateful to move away from the noise of the parked car behind me, I drive through the now-open gate, up the hill and park there instead. Time to swap soft shoes for supportive boots, and grab my cane. My knees have been giving me grief recently, and my ankle aches with every step more often than not. I don’t risk the walk without the cane these days. I’m still walking, though, and I am grateful.

I think of the powerful lesson of my late Dear Friend’s example; walking can prove to be a regretfully “use it or lose it” sort of thing, and over time, she lost her ability to walk with any ease, which discouraged her and caused her to walk less (and shorter distances), which caused the situation to worsen. That’s an oversimplification, and surely there’s more to it than that. Aging. Injury. Illness. Nonetheless, I think of her often, and our conversations about the lasting value of “staying on my feet”, and the very real risk if I were to stop walking. I keep walking, in spite of pain.

I lace up my boots, sighing and resenting the pain I’m in, as I stare at the smudgy beginning of this morning’s sunrise. I “turn my head wrong” and my headache reminds me rather quickly how rarely it’s not there. Fuck this headache. I’m grateful that I have an appointment for some care of my neck, later this morning. I know it helps.

I think about my Traveling Partner again, and hope that he’s sleeping. No good morning ping, yet. Rare for this time of morning, recently, and it seems an encouraging sign… but it could just mean he’s awake and grumpy as fuck and just not wanting to interact at all. Maybe he’s up, but only long enough to take medication before going back to bed? I wonder, and the wondering serves as an excuse to think longer about my beloved, though I don’t really need an excuse.

I sigh and stretch and look towards the horizon. It’s definitely time to begin again.

Hello sunrise. Hello new beginning.

I woke to a peculiar morning. It was past daybreak. Past dawn. Past the time the sunrise would have brought on the new day. I woke to a most peculiarly beige-infused sky… everything beige. The sand. The sea. The sky. It was… weird. I didn’t know what to make of it at all, and I snapped a couple pictures of the view of the western horizon from the balcony… that look completely ordinary on my camera.

No color adjustments, the pictures look… pink? Mauve? Equally strange, but not at all the color I saw with my naked human eyes, nor how they rendered on my camera.

I tried to find a filter or adjustment after-the-fact that might show the scene more the way I saw it, with limited success.

This is pretty close to what I saw, only even the water of the bay was the same orange-y beige of the sky.

It was strange. Very strange. It threw me off my expectations of the day, for sure. It didn’t last. By the time I made coffee, and made a short trip down to the hotel’s meager “breakfast bar” (a counter with some cereal and instant oatmeal, an air-pot of hot coffee, and a small fridge with yogurt in it), things looked more or less ordinary enough, with a rainy mist rolling in from the sea and showers in the forecast.

…Now I feel rather as if I “don’t know what to think”, which is quite an odd sensation…

I woke feeling rested after my wakeful time during the night. My dreams were rich and interesting. I woke feeling inspired and eager to feel the soft dry sticks of pastels between my fingers (although, for safety, I wear finger cots to prevent cadmium, cobalt, or chromium pigments from soaking into my skin). Seems a good day for it. (For which I am grateful, since it is one of the reasons I came to this place equipped thusly.)

It’s not a fancy hotel, but it suits the purpose.

My Traveling Partner pinged me a good-morning greeting before I woke. I returned it after he’d gone back to bed. He misses me. I miss him too. I am appreciative of my solitude – but also of the opportunity to miss my partner. Caregiving is hard, and tempers flare when perhaps they ought not. I know I could do better. I fucking love that man – and I mean to do better to treat him with love, patience, and kindness than I sometimes manage to do. It’s easy to take him for granted. It’s easy to be angry with circumstances and fail to differentiate circumstances from the man. Having some time apart reminds me how much I do yearn to be in his good company, how much I love his humor and his tenderness – and how hard it must be to be his best self under these trying circumstances, at all. This shit is hard. Caregiving is hard. Being the one having to accept caregiving is equally hard (and emotionally probably harder). I wish him well from afar, and pause to feel all the love we’ve shared over these many years. I’ve been with him now longer than with any one other human being – friend, lover, or family member. (Though I’ve had some friendships longer, those have endured quite a lot of distance between conversations and shared space – it’s not at all the same.) I left my parents’ home when I was 14. I’ve been with my Traveling Partner now, some 15 years. Wow. I know, I know – it’s not uncommon for monogamous folk who travel life’s path with a single partner they met when quite young to be together many decades; this still feels incredibly special and enduring to me. I’m grateful.

I’ll eat my yogurt (blueberry), drink my coffee, and walk on the beach before it begins raining seriously, then return to the room to paint in the diffuse gray light of this rainy day… a very pleasing way to begin again.