Like a dog circling to settle, I find the greatest calm and solace to begin is through the written word. I love language. Studied Latin at school. So just for a little levity before we begin, here’s a favourite phrase: Si hoc signum legere potes, operis boni in rebus Latinus alacribus et fructuosis potiri potes! Which translates to : If you can read this sign, you can get a good job in the fast-paced, high-paying world of Latin!
Now, I’m set. Shall we begin?
Πάσχω is the Ancient Greek origins of ‘I suffer, endure, feel, yearn’. Basically, it’s what the word ‘Passion’ means…to suffer for. So if I say ‘I’m passionate about chocolate’, it should really translate to ‘I like chocolate so much, and it’s making me fat!’
Passion is what being a carer is all about. Although we all suffer to a greater or lesser extent, not one of us ASK to suffer. It’s just part of life…that journey for which we seemingly have little say in. Let’s face it; there is no fathoming it – life is unfair! No one understands that more than a Carer.
πάθος means pathos; sympathy, empathy, sorrow for someone else’s suffering. So to be a carer, you’re naturally (or have had to learn to be) passionate and empathic. Not by any means easy. Particularly when you’ve reached breaking point and you feel you have nothing left to give.
We acknowledge the Beasts that you fight; both in the disease and suffering of the one you care for, and the one that has snuck in the back door of your mind. That particular Beast in you – the one you never met before? It’s a liar; it whispers bitter, hateful betrayals, portrayals and damning portends. Kill it before it sets root…my advice anyhoo, because all it is really is exhaustion.
So today, we applaud you. Because we know your work has not been cut out for you, you did not ask for this, you don’t really want this job, you are feeling unappreciated and underpaid, yet…you keep going. Why? In most cases it’s really simple – you have made a choice, and that choice is love. Agape love; ἀγάπη = to love unconditionally. Enough with the Ancient Greeks; I suspect they aren’t listening anyway. Oh….and by the way? There’s nothing in the manual about being perfect or even good at this task, so you can cut yourself some slack there!
Do you realize how rare and precious that makes you? When you’re body is spent, your mind is alternating between over-revving or fog, your soul exhausted and you feel like you can’t continue? Stop. Take a moment to be KIND to YOU, because you need to do that…treat yourself with the respect and love that you would and do treat others to. Your loved one or ‘charge’ will not suffer one iota more for you taking that minute. I’m a Christian, and I fully admit that the last stopping place for me in the maelstrom is the Lord – what’s with that? But, for me ‘be still and know that I am God’ is just shortened in those times to my mantra…be still. Be quiet. Breathe…..
Laughter: another great outlet for the weary. Me and my PD husband have been together for 37 years. Raised two fine boys that are now married and living on a different continent. We are blessed! But no relationship of any duration is free of strife, as you well know. He’s now into his 16th year with this particular alien invasion of Parkinson’s, and as you know, it’s a little different for everyone. For him, sleep is the most gruelling business, and that will have a knock-on effect in daytime hours. Being that he’s got maybe 10 inches and 100lb. on me, manoeuvring my dude can be…difficult. Yet, even in the midst of his Bradykinesia, we’ll find ourselves shlapplakking (at least that’s what his Dutch parents used to call it – uncontrollable laughter) at the sublime and ridiculous ministering of me trying to help him get his clothes on or off a chair. He also had profound RBD (REM Behavioural Disorder), which means he can get up, brush his teeth, eat, etc. all while he’s asleep – fun! Because he left the gas hob on once…and buttered a ball of string to eat it, I tend to follow him around in these spells; talking to him gently like he was a child. My first phrase would be ‘look at me’ – trying to gauge if he’s really awake or asleep. That mile-long bleary stare tells me he’s asleep. ‘Hey hon…it’s 2am. Do you know that?’ I’d ask. ‘Yup…’ he’d say, ‘time for coffee!’ he’d add with great gusto, before taking off in festinations – a gait that just increases in speed until I catch him or he hits something (or someone…eek!). I’d try to coax him back to bed. Getting him in and out of the car? A comedy of errors! We laugh when we can; we cry when it’s just too much.
Don’t get me wrong; it’s a serious business, caring for someone with a degenerative disease. Personally, what kills me is when my dude’s going through one of his PLMD (Periodic Limb Movement Disorder) spells that occur about once or twice a month. This’ll last a few days, and every minute of the night can be sheer hell to watch, much less have. We’ve tried everything, to no avail. To see him in the throes of violent agony which culminate in massive leg-kicks that radiates from his back like a whip-lash every 6 or so seconds, is like watching someone tasered over and over again. He can’t sleep, can’t stop, and the only momentary relief is when I can get him up on his feet for a few tightly-held seconds of rest. It’s the only thing that can control them; his own body weight. But it’s a precarious perch that I can only keep up for a while. And then I will pray amidst this rage of my mind, body and soul, at this ruinous, savage road of Parkinson’s. And I’ll say to myself and Him upstairs, ‘come on! You wouldn’t let adog suffer so….’ So we stand, holding on for dear life, and I stand, also convicted of my own ‘take him or break him’ bargaining; this is my beloved that I’ve offered up in an ill-fitting sacrifice during those moments of despair. Once the spell is spent by utter exhaustion, a void of shame and nothingness leaves me numb. It’s brutal, undermining and deeply unsettling.
We also know how this journey will end, cure aside. Honestly? It terrifies me to the point that I swear could kill me; particularly when M J Fox correctly stated ‘in the end..it’s all about stillness…’ That’s when the dopamine finally runs out. And I witnessed a taste when my man’s DBS machine (the IPG) was turned off for ONE SECOND only, Expecting him to go into uncontrollable flailing, I was kneeling on the floor with my body bracing his legs and my arms holding down his arms. His response was profoundly alarming; his entire body turned to stone. I kept talking loudly to him, didn’t want him to know the panic I was feeling, ‘Pete…look at me, look at me’! His eyes were half-lidded and glazed over – I was checking his pupils to see if he’d had some massive stroke. The upshot? He finally came ‘round 30+ seconds later. He had heard me – just utterly unable to respond. Turns out his sub-group is akinesia, so I finally truly understood what MJF meant. So now? We just don’t entertain the idea; it serves no purpose but to make life harder. You know that old adage, ‘don’t sweat the small stuff…’? This is it, for both you and me…it might be huge and terrifying as the beastie in the wardrobe, but it’s stillnot in our control. So, drop it. Because that puppy’ll drain you dry.
You don’t have to put a ‘brave-face’ on all the time – that’s far too much to ask. Yes, and there will be some people who will not get it. They’ll brazenly (in a naïve but sweet intent) gravitate towards your caree – not you! Sometimes, that hurts like the Dickens, but hell – claim the moment for yourself! It’s actually even more annoying when they ignore your caree, even when YOU want to!
So for me, caring is baby-steps. One foot in front of the other, then the other foot…and don’t look at what you cannot control. Yes it’s tough and hard and gruelling at times. And you have to learn when you need a break. Don’t look back, don’t look forward, just look up! That’s plenty enough.
Bless you for what you do..and do..and continue to do. You are LOVED…even when you don’t think so.
Oh, and don’t forget to hydrate!