I like words.
We're hard wired to use our words to label things, to compartmentalize, organize them. It's part of how we distinguish friend from foe, recognize danger and know when to kick into " fight or flight" mode. We can't help ourselves.
In my role as a caregiver, I'm very careful. No empty promises, no pleasant platitudes, no,"Everything will be okay". I've become very conscious of the words I use. It can get tricky, a little like navigating a verbal mine field. I've also become more aware of the words of others.
I am an informal, same-sex, interracial, spousal caregiver: providing care to a person with a terminal, degenerative, neuromuscular disease. These are currently MY words.
That doesn't sound so, so bad. Informal. I can wear jeans?
I'm an unpaid, untrained, Caucasian guy trying to take care of my male Pinoy partner. He's dying. His disease will shut down his body, bit by bit, until it kills him.
That doesn't have quite the same polish now does it? Strange how different informal reads as opposed to unpaid and untrained, terminal versus dying. It's less tidy, less palatable.
But it's the same thing.
We use our words to dress things up. Avoid things. Sterilize situations with clinical descriptions. Throw enough adjectives into the mix and things don't sound so bad. Get out the thesaurus. He's not dying, he's terminal, needs hospice, palliative care. It's easy to gloss over things we don't want to acknowledge. To be less Jen-uine.
I've spent a lot of time online looking for peer support. I can cry and type, I can't cry and talk. And I can do it at 2 in the morning when I can't sleep.
In my searches, I kept coming across things like, "it was my honour", "it was my privilege". "Fighting the good fight". "Extreme caregiver". " If you love them enough".
I couldn't relate to what I was reading. At first I thought there must be something wrong with me, with our situation. I stayed very quiet because any comments to the contrary got trounced.
Eventually I did find a forum dedicated to ALS, their CALS (caregivers) and PALS (people with), It was such a relief. Finally a group of people who I understood, who supported me and were supported by me in return. No grand statements, no judgement, no playing to the masses. Just help.
Friends and family say things like, "he's lucky to have you", " I'm glad he has you", "I don't know how you do it". I've been called extraordinary and special. A generous spirit. My mom keeps telling me how proud her and my father are of me.Then of course there is my personal WTF did you just say to me, " you don't know/understand how hard it is for me to see him like this".
Here is my truth.
Being a caregiver ranks as one of the worst experiences I've ever had. Intense stress and pressure. Draining physically, mentally and financially. A road filled with more sorrow and heartbreak than I could have ever thought possible. I can't imagine ever looking back fondly on this. I wouldn't wish this on anyone.
I don't feel honoured or privileged to be his caregiver. I didn't get picked because of my awesome skills, He didn't have a choice, I was all he had. He's stuck with me, like it or not.
We're not fighting anything. It's not a battleground or a contest. There is no winning or losing. There is only trying to live each day as best we can.
There is no extreme caregiver. It's not a sport. You don't get a medal or a trophy. There is no independent review by your peers to establish a rank. You either are one or you're not.
"If you love them enough". "If " statements are absolute rubbish. I'd liken it to telling an expectant mother if she loves her child enough, labour won't hurt. It's a bit silly really, but people feel obliged to trot them out anytime things are difficult.
Loving is the easy part. It's why I'm here. It's what gets me out of bed when I'm so tired I can barely think. It's why I'm by his side for as long as he'll have me. It's why I willingly accepted this burden and it is a heavy load to bear. I'd do it all over again in a heartbeat. No questions asked. No need to quantify my feelings, they're enough.
Unfortunately, love doesn't pay the bills, add extra hours to the day or make me two people. Telling me if I love my partner enough that everything will be okay is useless. It's a trite, empty platitude. ALS doesn't care how I feel about my partner, nor does the bank or my employer.
Whenever I hear,"he's lucky to have you" . " I'm glad he has you" or "I don't know how you do it", I often think to myself, I bet you are/don't. Not to worry, I've got this. Go back to being just as supportive as you've been these last few years. See, not so special, or extraordinary or so generous. Just me.
As for my mom, she makes me laugh. I'm not sure what she's so proud of. They taught me to take care of the people in your life, They led by example so I blame them. It's their fault for making me this way. I'm still not making my bed though, there are limits.
I think the next time someone says," you don't know/understand how hard it is for me to see him like this" I'm just going to stare at them, blinking. Give them some time to digest what they've just said to me. Trust me, I understand.
How about we stop trying to shove this pig into a silk dress? No matter how you dress it up, it's still a pig. Bad things happen. Death and dying are an inevitable part of life.
Embrace and accept the bad. Welcome it in and sit it at your table. When it's time, send it on it's way. It's okay to be sad, to cry, to mourn, to feel overwhelmed. Happy isn't our only state of being.
Denying or avoiding the unpleasant parts of life and let's face it, my current situation is no one's idea of a good time, means you ultimately miss out on some of it's joys. Yes, we have had moments of joy on this road. Lots of them. Made all the more precious because of the situation that surrounds them. I will be present for those.
When you see me, let's just skip the pleasantries, those empty words. Don't ask how we're doing unless you really want to know. Tell me a joke, make me laugh, be the arms that hold me for a second, be the shoulder to cry on, the ear to listen if I need to talk. Some times the best use of our words is to let them remain unsaid.
